Just when you thought you had a diagnosis... (11/12/07)
Over the weekend we were thrown for a (possibly hopefully promising maybe please?) loop when our second opinion pathologist reported back, saying this could actually be a form of embryonal rhabdomyosarcoma, instead of a carcinosarcoma. Did you hear that? It might be an embryonal rhabdomyosarcoma!!
Well, don't all jump up and down at once...
It turns out, even though it's a longer set of words and kind of sounds more ominous, this could actually be a good sign. Maybe.
The original pathology did list rhabdo as a possibility, but the end diagnosis leaned toward confirming carcinosarcoma, which was the pre-op diagnosis. Carcinosarcoma, as we have discussed previously, is a rare crazy cancer that no one seems to have any idea how to deal with. The medical oncologists were basically making a chemo plan that would hopefully treat both components of the cancer, but in reality it was a best guess (or rather, two different best guesses).
Now, rhabdomyosarcoma is a cancer that typically is found in young children, and though it's still nasty nasty, there's actually some data on it. For example, I spoke with a pediatric oncologist this morning who was able to ascribe categorizations to the disease, like stages and groups, as well as risk levels - these terms were things that no one has really talked about before with carcinosarcoma. When we asked for the prognosis from my medical oncologist for carcinosarcoma, she basically said she could try and come up with some rate of recurrence, but that it would be pretty meaningless.
In any case, from what the pediatric onc doc said, I would fit into stage III (tumor > 5cm; mine was around 5.4cm I think), group II (all visible tumor removed, only microscopic cells remaining) of rhabdomyosarcoma. Assuming I'm still in that state at this point (there was no spread in the CT scan 2 days before surgery, so unless something else has shown up in the past month, I should be clear), the prognosis is good and I'm in the low risk category...
But I'm not celebrating quite yet. . . we will get final results from the extra tests/stains they're doing on the tissue samples tomorrow. Most likely I'll still be going in for chemo on Thursday, but the regimen will depend on the pathologists' consensus on the diagnosis. Hopefully they'll agree on something by then or we may have to postpone a few days.
Bottom line: For stuff like this, always get a second opinion.
Keep yer fingers crossed!
Monday, November 12, 2007
Tuesday, November 06, 2007
Waking up is hard to do
Quick update on today (11/6/07)
So I haven't been sleeping that well, but at least my urinary control is getting a little better, day by day. It's still quite frustrating but not nearly as bad as it was the first day. I'm trying not to build up stress, but it's hard when my outlet used to be exercise, and now I can't do much of anything. Walking is okay but hurts after a little while. I'm starting to do a bit of tai chi again, and that feels pretty good, but I'm being careful not to overdo it.
Over the weekend we also went to a Chinese doctor who gave me some herbal supplements to help improve digestion and generally help my immune system. It seems like all Chinese doctors tell you that you have poor digestion, but maybe it's because it's true... I'm not sure, but talking to our western doctors it doesn't seem like it can hurt (we also got some consultation from other Chinese docs as well). Anyhow, I have to keep building up my strength and energy before the chemo...
Hospital Stay: Surgery
Now back to the past...
So when we last left off, I had been drinking the nasty bowel prep liquid and trying to keep my mind from worrying too much about the impending surgery in the morning. At the same time, I was mentally preparing myself to wake up from surgery with a stoma in my abdomen and also to have to stay in the hospital for 10 days...
The nurses came into the room at 4:30am on the day of the surgery; my mom and sister showed up at 5am. There wasn't a whole lot to do to prepare at that point. I got up, went to the bathroom, brushed my teeth, and did the normal things one does in the morning I suppose. Then the transport guys showed up with a gurney and whisked me away to the pre-op waiting room.
There I waited with mom and sister or mom and Serena (only could have two at a time) while people came around and asked me questions, confirmed my name and such, and made sure that I knew what was going to happen that day. The anesthesiologists came in as well to ask if I wanted to have an epidural put in place for pain control (this would actually turn out to be more trouble than it was worth, but at the time it seemed like a good idea). My surgeon had recommended this if by chance he had to remove my bladder - that is, the pain would be much worse than if it was just the prostate, and the epidural would help to control that. Sounds fun, eh?
So you may be thinking, "Epidural... epidural... where have I heard that before?". Well, an epidural is what they give to pregnant women when they're about to have a baby - it's a small tube that they insert into your spine to numb the lower portion of the body. I guess it's a little more effective than other medications because they can deliver stuff straight to your abdomen and pelvis, and you don't get as woozy as you would with other more systemic medications. Plus they give you this little button that allows you to give yourself a shot of one of the three pain medications, though I'm kind of convinced that that button doesn't do a whole lot.
Anyhow, so I opted for the epidural, and eventually when about 7am rolled around, they took me out of the waiting room and into the OR. I have to say I didn't actually feel that scared. I don't know why I didn't feel scared - it seemed like I should have been freaking out at that point, but I felt relatively calm about going into surgery. It's funny, because the actual surgery is really easy for the patient. The worst I had to knowingly endure was the doctor putting in the epidural itself. I was kind of waiting for it to hurt a lot or feel weird (it's a strange sensation to have someone poke you in the back like that - some how not being able to see what they're doing makes it a little scarier I guess), but it really wasn't that bad. Once they had it in, they told me to lie down on my back and breathe into the oxygen mask while they administered the anesthesia. Two or three breaths in and I was out...
"Alex! Alex! blah blah blah! Alex! blah!"
That's about what it's like when you wake up - all I really remember was hearing my name a bunch and then I was in the post-op waiting room. I'm sure they were actually saying things like, "Alex, can you hear me? Alex, open your eyes!" but really all I remembered was hearing my name. First thing I asked the nurse was what time it was - she said about 1pm. I was doing the math in my head - my surgeon said that the prostate procedure would take 3-4 hours; if they had to remove the bladder it would be about 7 hours. I was trying to deduce from the time what they had ended up doing - I thought they had started around 7am, so in a total of 6 hours... Seemed like there was a chance they only took the prostate, but I was too afraid to ask. I had a free hand that wasn't tied to an IV, but I was afraid to move it over my abdomen to check. I figured I'd just wait for a doctor to come tell me something.
Finally the surgery fellow came in and asked me some questions... he didn't tell me anything though, so I called him over to ask what they had done. When he told me they only took the prostate, I thanked him profusely for the news. Oh my god what a relief. Then the surgeon came over and confirmed, and I had nothing but love for the guy. Kind of silly, really, because objectively, he really didn't have much to do with the decision. Of course he was going to try to spare the bladder, but if the cancer had gotten out, it would have decided whether or not he had to take the bladder. Still, I was grateful, and so so soooo relieved...
So I haven't been sleeping that well, but at least my urinary control is getting a little better, day by day. It's still quite frustrating but not nearly as bad as it was the first day. I'm trying not to build up stress, but it's hard when my outlet used to be exercise, and now I can't do much of anything. Walking is okay but hurts after a little while. I'm starting to do a bit of tai chi again, and that feels pretty good, but I'm being careful not to overdo it.
Over the weekend we also went to a Chinese doctor who gave me some herbal supplements to help improve digestion and generally help my immune system. It seems like all Chinese doctors tell you that you have poor digestion, but maybe it's because it's true... I'm not sure, but talking to our western doctors it doesn't seem like it can hurt (we also got some consultation from other Chinese docs as well). Anyhow, I have to keep building up my strength and energy before the chemo...
Hospital Stay: Surgery
Now back to the past...
So when we last left off, I had been drinking the nasty bowel prep liquid and trying to keep my mind from worrying too much about the impending surgery in the morning. At the same time, I was mentally preparing myself to wake up from surgery with a stoma in my abdomen and also to have to stay in the hospital for 10 days...
The nurses came into the room at 4:30am on the day of the surgery; my mom and sister showed up at 5am. There wasn't a whole lot to do to prepare at that point. I got up, went to the bathroom, brushed my teeth, and did the normal things one does in the morning I suppose. Then the transport guys showed up with a gurney and whisked me away to the pre-op waiting room.
There I waited with mom and sister or mom and Serena (only could have two at a time) while people came around and asked me questions, confirmed my name and such, and made sure that I knew what was going to happen that day. The anesthesiologists came in as well to ask if I wanted to have an epidural put in place for pain control (this would actually turn out to be more trouble than it was worth, but at the time it seemed like a good idea). My surgeon had recommended this if by chance he had to remove my bladder - that is, the pain would be much worse than if it was just the prostate, and the epidural would help to control that. Sounds fun, eh?
So you may be thinking, "Epidural... epidural... where have I heard that before?". Well, an epidural is what they give to pregnant women when they're about to have a baby - it's a small tube that they insert into your spine to numb the lower portion of the body. I guess it's a little more effective than other medications because they can deliver stuff straight to your abdomen and pelvis, and you don't get as woozy as you would with other more systemic medications. Plus they give you this little button that allows you to give yourself a shot of one of the three pain medications, though I'm kind of convinced that that button doesn't do a whole lot.
Anyhow, so I opted for the epidural, and eventually when about 7am rolled around, they took me out of the waiting room and into the OR. I have to say I didn't actually feel that scared. I don't know why I didn't feel scared - it seemed like I should have been freaking out at that point, but I felt relatively calm about going into surgery. It's funny, because the actual surgery is really easy for the patient. The worst I had to knowingly endure was the doctor putting in the epidural itself. I was kind of waiting for it to hurt a lot or feel weird (it's a strange sensation to have someone poke you in the back like that - some how not being able to see what they're doing makes it a little scarier I guess), but it really wasn't that bad. Once they had it in, they told me to lie down on my back and breathe into the oxygen mask while they administered the anesthesia. Two or three breaths in and I was out...
"Alex! Alex! blah blah blah! Alex! blah!"
That's about what it's like when you wake up - all I really remember was hearing my name a bunch and then I was in the post-op waiting room. I'm sure they were actually saying things like, "Alex, can you hear me? Alex, open your eyes!" but really all I remembered was hearing my name. First thing I asked the nurse was what time it was - she said about 1pm. I was doing the math in my head - my surgeon said that the prostate procedure would take 3-4 hours; if they had to remove the bladder it would be about 7 hours. I was trying to deduce from the time what they had ended up doing - I thought they had started around 7am, so in a total of 6 hours... Seemed like there was a chance they only took the prostate, but I was too afraid to ask. I had a free hand that wasn't tied to an IV, but I was afraid to move it over my abdomen to check. I figured I'd just wait for a doctor to come tell me something.
Finally the surgery fellow came in and asked me some questions... he didn't tell me anything though, so I called him over to ask what they had done. When he told me they only took the prostate, I thanked him profusely for the news. Oh my god what a relief. Then the surgeon came over and confirmed, and I had nothing but love for the guy. Kind of silly, really, because objectively, he really didn't have much to do with the decision. Of course he was going to try to spare the bladder, but if the cancer had gotten out, it would have decided whether or not he had to take the bladder. Still, I was grateful, and so so soooo relieved...
Friday, November 02, 2007
Catheter-free and learning to pee
Hey folks -
Just a quick post today, but real-time... So I ended up going to the doctor on Wednesday (Halloween...) to get the Foley catheter taken out (I think it was getting infected anyway) and to talk to the medical oncologist about our next treatment steps. For those of you who don't know, the medical oncologist is the one who takes care of the chemotherapy treatment plan, while the radiation oncologist deals with - you guessed it - radiation therapy. Anyhow, it turns out they want to start me on chemo as soon as possible, so I'm going in for the first dose in two weeks. It'll be a 3-week cycle, with 5 days of treatment (I'm going to do the first cycle in the hospital as an in-patient and see how it goes; may switch to outpatient after that) and then 2-weeks off, for 4 cycles (3 months). The drugs will be IV drugs with all sorts of nasty side effects - nausea, fatigue, hair loss, etc. I'll have two to treat the carcinoma portion of the cancer, and one to treat the sarcoma portion. After the second cycle they said they might start radiation as well, but that all depends on how I'm tolerating the therapy.
It seems sooner than I thought, but after talking to my surgeon more on Wed, it seemed like there was some concern about the margins of the surgery. There were two spots where the cancer had gone outside of where they cut (in fact, it had gone out of the prostate capsule on the left side but he managed to cut most of it out), and he seemed concerned about the spot which was down near the urethra connection on the left side. Both were microscopic in nature, but they want to be sure to get everything.
In the meantime, I've been struggling a bit with getting urinary control back. The first day or two has been tough, but I'm feeling a bit more hopeful today. For normal prostate patients it can take months to get back normal control, but I'm hoping my youth and health will help me recover more quickly. For now, though, I feel a bit like an incontinent old man (sorry to all those older men out there - when you were 28 you probably would feel strange having these problems, too...). Mostly the problem is just some leaking when I stand up, though I'm starting to be able to control that. It almost makes you want to have the catheter back in. . . as much as a pain as that is, there is some convenience to not having to go to the bathroom all the time (esp. at night - with the night bag you can basically sleep through the entire night no matter how much you pee). Luckily they make these "male guards" now, which are basically like thick maxi pads for guys with urinary problems. They work amazingly well - props to the diaper industry for coming up with these super-absorbing materials.
K, that's it for now. More on the old hospital stay later...
Just a quick post today, but real-time... So I ended up going to the doctor on Wednesday (Halloween...) to get the Foley catheter taken out (I think it was getting infected anyway) and to talk to the medical oncologist about our next treatment steps. For those of you who don't know, the medical oncologist is the one who takes care of the chemotherapy treatment plan, while the radiation oncologist deals with - you guessed it - radiation therapy. Anyhow, it turns out they want to start me on chemo as soon as possible, so I'm going in for the first dose in two weeks. It'll be a 3-week cycle, with 5 days of treatment (I'm going to do the first cycle in the hospital as an in-patient and see how it goes; may switch to outpatient after that) and then 2-weeks off, for 4 cycles (3 months). The drugs will be IV drugs with all sorts of nasty side effects - nausea, fatigue, hair loss, etc. I'll have two to treat the carcinoma portion of the cancer, and one to treat the sarcoma portion. After the second cycle they said they might start radiation as well, but that all depends on how I'm tolerating the therapy.
It seems sooner than I thought, but after talking to my surgeon more on Wed, it seemed like there was some concern about the margins of the surgery. There were two spots where the cancer had gone outside of where they cut (in fact, it had gone out of the prostate capsule on the left side but he managed to cut most of it out), and he seemed concerned about the spot which was down near the urethra connection on the left side. Both were microscopic in nature, but they want to be sure to get everything.
In the meantime, I've been struggling a bit with getting urinary control back. The first day or two has been tough, but I'm feeling a bit more hopeful today. For normal prostate patients it can take months to get back normal control, but I'm hoping my youth and health will help me recover more quickly. For now, though, I feel a bit like an incontinent old man (sorry to all those older men out there - when you were 28 you probably would feel strange having these problems, too...). Mostly the problem is just some leaking when I stand up, though I'm starting to be able to control that. It almost makes you want to have the catheter back in. . . as much as a pain as that is, there is some convenience to not having to go to the bathroom all the time (esp. at night - with the night bag you can basically sleep through the entire night no matter how much you pee). Luckily they make these "male guards" now, which are basically like thick maxi pads for guys with urinary problems. They work amazingly well - props to the diaper industry for coming up with these super-absorbing materials.
K, that's it for now. More on the old hospital stay later...
Monday, October 29, 2007
Hospital Stay: Preparation
10/29/07 - Update on today
So first, I guess the update on my current condition. Been walking around quite a bit, but I still can't handle too much strain. Dad was in town this weekend, so I was out and about with him and my sister a bit, though taking plenty of sit breaks. I went out for brunch on Sunday with some friends - I suppose one of the good things about all this is getting back in touch with old friends who I don't see too much - though man, the portions at Stacks are gi-normous. The catheter's getting to be a bit annoying, but it's not too bad when I switch to the leg bag to walk around Anyhow, all in all not feeling too bad. I've got my follow up appointment with the doc on Thursday, so I guess I'll know a bit more about the upcoming treatment plan then.
Hospital Stay: Preparation and Anticipation
I felt quite healthy in the days up to the operation, but this only amplified the surreal nature of what was, or what was possibly, about to happen. That is, to know that in a few days I might wake up without a bladder was just really bizarre. I guess the only way to prepare for it was to assume the worst, so that I might be pleasantly surprised. The trick is to not hang your hopes too much on being pleasantly surprised...
As the time to surgery drew closer, I started to feel a bit antsy. There was one day when I was just really irritable. I certainly cried a few times, but mostly I didn't feel scared or too worried. I don't know, maybe I was just in shock and so not feeling much of anything. It of course helped to have my sister and mom and other friends around, but mostly it just felt really strange. It didn't help that I was running around to sperm banks and fertility clinics in those couple days before checking in to the hospital, although I guess it kept me busy at least. I also made it a point to hang out with friends and even convinced my mom to make her world-famous Peking duck (a rare occasion, as usually she only does this on Thanksgiving and at Christmas).
I had a follow-up consultation appointment at UCSF on Wednesday (10/17/07), when I also started my clear liquid diet (apple juice, white grape juice, cranberry, water, Jello, chicken broth). Yum! My mom went a little overboard making Jello the night before, but it was well appreciated. Actually I think my sister just - 2 weeks later - threw out a couple tupperwares' worth that we never quite got through). To top it off, I was also scheduled for a PET/CT that day, which meant I wasn't able to eat the Jello or even drink anything besides water until about 3pm that day. The PET/CT combines PET, which allows you to see overly active areas in the body (like tumors), and the CT, which allows you to see anatomical structures. Luckily the PET/CT didn't show any active areas besides what was in the urinary tract area. This scan wasn't good enough to show whether things had spread to the bladder, but at least it showed that it hadn't spread anywhere else. The gist of the appointment with the docs was that though there were some subtle differences in the way that the UCSF pathologists read the biopsies compared to Stanford, nobody said surgery was not the first step...
Pokey pokey
So finally Thursday came and we checked into the hospital into the ambulatory treatment unit (ATU). I guess that's where they place pre-op patients, or at least folks who can walk around. They gave me a huge room that normally should have five patients in it, but it seemed they'd converted it to a storage room for miscellaneous stuff like a gurney, wheelchair, bookshelf, etc. and I otherwise had it all to myself. We showed up around noon and were basically sitting around for a while, with intermittent interruptions from the nurses. They sent me down to get an X-ray (in a wheelchair, I guess it's policy), took some blood samples, and poked me three times before getting an IV started. Eventually even the one they ended up starting had to be replaced (I have a huge 3-4 inch wide bruise there still). I don't know why my veins seem so troublesome to some people - the last time I was in the hospital they didn't seem to have much difficulty. Though when I went for my first CT scan in July the resident and nurse poked me 3 and 2 times respectively before getting the IV in there. I've been poked so many times for different samples that at this point it doesn't really bother me, but I sure do appreciate it when the nurse can do it quickly and on the first try.
The "stoma" nurse
At some point in the afternoon the "stoma" nurse came in to describe what my potential new pee hole was going to look/be like. Basically, when they take the bladder out, they create this replacement pouch out of part of your intestine. They cut out a section of the intestine and sew the remaining parts back together. Preserving the blood supply to the pouch, they then connect one end to the ureters, which bring urine from the kidneys to the bladder, and the other end they form into a small opening that is brought to the surface of the skin by pulling it through a small hole there. They pull that part out and then sew the edges to the skin around the hole. So you basically end up with this bright reddish circle with a hole in the center on your skin, and that's the stoma. The hole is kept closed most of the time by the muscles in that area. The weird thing about it that I didn't realize was that the stoma would be wet and mucousy. I had previously imagined it would just be a small, dry hole in the skin. I'd have to keep it covered with a bandage when wearing clothes, but otherwise there was no problem getting it wet, swimming, etc. Okay, not too bad I guess. I knew already that if they had to put one of these in I'd still be able to do all the things I normally did/could. It was just weird to have the nurse describing this to me so matter of factly, then even weirder when she took a Sharpie and drew a big dot on my abdomen where the stoma would be.
The "cocktail"
So finally all the poking and prodding had subsided (at least for the time being), and it was time for my "cocktail". Basically, because I was potentially going to have my bladder removed, they wanted to prep me as though they would need to use the intestine to create a new urine collection pouch. This of course meant that I had to make sure my system was totally cleaned out, much like you would for a colonoscopy, for those of you who may have had that lovely experience. So essentially you get to drink 4 liters of this nasty, nasty liquid that tastes like thick, salty water with (in this case) a hint of artificial pineapple flavoring. Apparently they make other flavors but this was the only one my hospital had. When you try a sip of this stuff, it's not soo bad, but when you're on your second liter or so, it gets pretty aweful. Ice helps for some reason, and chugging it a cup at a time is definitely preferable to sipping. A cheerleading/cup refilling squad is also useful for motivation. So about 20 minutes after the first cup or so, you basically start having to go to the bathroom to have diarrhea. The urgency is not so bad that you can't make it there without running, but it's not exactly a pleasant experience.
Pretty much every time I came out of the bathroom I would pace around the room glaring at the refilled cup of liquid, and my heart would sink when I saw how little of the jug I had gotten through. Slowly but surely, though, over the course of a few hours, the level started to come down, and eventually, with probably an 1/8th of the jug left, the nurse said my toilet water looked clear enough to stop. Ugh. My bowels didn't quite get the message and kept putting out stuff for a couple hours after that, but mostly it was over.
Now it was just trying to keep my mind off things and get some sleep before getting awoken at 4:30am the next morning. Through that afternoon and evening, I kept feeling thoughts creep into my head about the possibilities of the upcoming surgery. Would this be the last time I would be able to pee normally? Should I be more worried than I was? I felt like I had mentally prepared myself for what was coming, but did I really know? Was I sure I was prepared? I decided to put those thoughts out of my mind. Serena stayed over and we watched the Transformers movie (new one) on her mom's portable DVD player before going to bed. Probably a mistake to lose sleep for that, but it was definitely a good distraction.
So first, I guess the update on my current condition. Been walking around quite a bit, but I still can't handle too much strain. Dad was in town this weekend, so I was out and about with him and my sister a bit, though taking plenty of sit breaks. I went out for brunch on Sunday with some friends - I suppose one of the good things about all this is getting back in touch with old friends who I don't see too much - though man, the portions at Stacks are gi-normous. The catheter's getting to be a bit annoying, but it's not too bad when I switch to the leg bag to walk around Anyhow, all in all not feeling too bad. I've got my follow up appointment with the doc on Thursday, so I guess I'll know a bit more about the upcoming treatment plan then.
Hospital Stay: Preparation and Anticipation
I felt quite healthy in the days up to the operation, but this only amplified the surreal nature of what was, or what was possibly, about to happen. That is, to know that in a few days I might wake up without a bladder was just really bizarre. I guess the only way to prepare for it was to assume the worst, so that I might be pleasantly surprised. The trick is to not hang your hopes too much on being pleasantly surprised...
As the time to surgery drew closer, I started to feel a bit antsy. There was one day when I was just really irritable. I certainly cried a few times, but mostly I didn't feel scared or too worried. I don't know, maybe I was just in shock and so not feeling much of anything. It of course helped to have my sister and mom and other friends around, but mostly it just felt really strange. It didn't help that I was running around to sperm banks and fertility clinics in those couple days before checking in to the hospital, although I guess it kept me busy at least. I also made it a point to hang out with friends and even convinced my mom to make her world-famous Peking duck (a rare occasion, as usually she only does this on Thanksgiving and at Christmas).
I had a follow-up consultation appointment at UCSF on Wednesday (10/17/07), when I also started my clear liquid diet (apple juice, white grape juice, cranberry, water, Jello, chicken broth). Yum! My mom went a little overboard making Jello the night before, but it was well appreciated. Actually I think my sister just - 2 weeks later - threw out a couple tupperwares' worth that we never quite got through). To top it off, I was also scheduled for a PET/CT that day, which meant I wasn't able to eat the Jello or even drink anything besides water until about 3pm that day. The PET/CT combines PET, which allows you to see overly active areas in the body (like tumors), and the CT, which allows you to see anatomical structures. Luckily the PET/CT didn't show any active areas besides what was in the urinary tract area. This scan wasn't good enough to show whether things had spread to the bladder, but at least it showed that it hadn't spread anywhere else. The gist of the appointment with the docs was that though there were some subtle differences in the way that the UCSF pathologists read the biopsies compared to Stanford, nobody said surgery was not the first step...
Pokey pokey
So finally Thursday came and we checked into the hospital into the ambulatory treatment unit (ATU). I guess that's where they place pre-op patients, or at least folks who can walk around. They gave me a huge room that normally should have five patients in it, but it seemed they'd converted it to a storage room for miscellaneous stuff like a gurney, wheelchair, bookshelf, etc. and I otherwise had it all to myself. We showed up around noon and were basically sitting around for a while, with intermittent interruptions from the nurses. They sent me down to get an X-ray (in a wheelchair, I guess it's policy), took some blood samples, and poked me three times before getting an IV started. Eventually even the one they ended up starting had to be replaced (I have a huge 3-4 inch wide bruise there still). I don't know why my veins seem so troublesome to some people - the last time I was in the hospital they didn't seem to have much difficulty. Though when I went for my first CT scan in July the resident and nurse poked me 3 and 2 times respectively before getting the IV in there. I've been poked so many times for different samples that at this point it doesn't really bother me, but I sure do appreciate it when the nurse can do it quickly and on the first try.
The "stoma" nurse
At some point in the afternoon the "stoma" nurse came in to describe what my potential new pee hole was going to look/be like. Basically, when they take the bladder out, they create this replacement pouch out of part of your intestine. They cut out a section of the intestine and sew the remaining parts back together. Preserving the blood supply to the pouch, they then connect one end to the ureters, which bring urine from the kidneys to the bladder, and the other end they form into a small opening that is brought to the surface of the skin by pulling it through a small hole there. They pull that part out and then sew the edges to the skin around the hole. So you basically end up with this bright reddish circle with a hole in the center on your skin, and that's the stoma. The hole is kept closed most of the time by the muscles in that area. The weird thing about it that I didn't realize was that the stoma would be wet and mucousy. I had previously imagined it would just be a small, dry hole in the skin. I'd have to keep it covered with a bandage when wearing clothes, but otherwise there was no problem getting it wet, swimming, etc. Okay, not too bad I guess. I knew already that if they had to put one of these in I'd still be able to do all the things I normally did/could. It was just weird to have the nurse describing this to me so matter of factly, then even weirder when she took a Sharpie and drew a big dot on my abdomen where the stoma would be.
The "cocktail"
So finally all the poking and prodding had subsided (at least for the time being), and it was time for my "cocktail". Basically, because I was potentially going to have my bladder removed, they wanted to prep me as though they would need to use the intestine to create a new urine collection pouch. This of course meant that I had to make sure my system was totally cleaned out, much like you would for a colonoscopy, for those of you who may have had that lovely experience. So essentially you get to drink 4 liters of this nasty, nasty liquid that tastes like thick, salty water with (in this case) a hint of artificial pineapple flavoring. Apparently they make other flavors but this was the only one my hospital had. When you try a sip of this stuff, it's not soo bad, but when you're on your second liter or so, it gets pretty aweful. Ice helps for some reason, and chugging it a cup at a time is definitely preferable to sipping. A cheerleading/cup refilling squad is also useful for motivation. So about 20 minutes after the first cup or so, you basically start having to go to the bathroom to have diarrhea. The urgency is not so bad that you can't make it there without running, but it's not exactly a pleasant experience.
Pretty much every time I came out of the bathroom I would pace around the room glaring at the refilled cup of liquid, and my heart would sink when I saw how little of the jug I had gotten through. Slowly but surely, though, over the course of a few hours, the level started to come down, and eventually, with probably an 1/8th of the jug left, the nurse said my toilet water looked clear enough to stop. Ugh. My bowels didn't quite get the message and kept putting out stuff for a couple hours after that, but mostly it was over.
Now it was just trying to keep my mind off things and get some sleep before getting awoken at 4:30am the next morning. Through that afternoon and evening, I kept feeling thoughts creep into my head about the possibilities of the upcoming surgery. Would this be the last time I would be able to pee normally? Should I be more worried than I was? I felt like I had mentally prepared myself for what was coming, but did I really know? Was I sure I was prepared? I decided to put those thoughts out of my mind. Serena stayed over and we watched the Transformers movie (new one) on her mom's portable DVD player before going to bed. Probably a mistake to lose sleep for that, but it was definitely a good distraction.
Wednesday, October 24, 2007
Sperm Banks
A blurb about today (10/24/07)
Woke up today feeling pretty good - I slept through the night without waking up and actually got up at a reasonable hour (around 9:30am). Finally had a couple of bowel movements yesterday (hee, hee, he said poo), though I'm not sure everything's quite awake down there. Really each day the pain seems to get less and less, as I suppose it should, but it's much more noticeable than I anticipated. I almost feel like I'm cheating somehow to have gotten off so easily from the surgery. Almost.
And now to the sperm...
One of the big problems with removing the prostate is that it makes you sterile. So basically, the doctor recommended I bank as much sperm as possible before the operation. Afterwards there's still the possibility of removing sperm directly from the testicles, but once chemo or radiation therapy starts, even that option goes away.
I really hadn't anticipated through all this having to think about how/when I would want to have kids. I suppose I've always thought I wanted kids, maybe one or two, but with everything else going as it was in my life it seemed like that and any decisions related to it would be a long way off. Now all of a sudden I was having to plan years in advance just to have the chance to have kids somewhere down the line.
So I had my first appointment at a local sperm bank on the Friday (10/12/07) before the surgery was supposed to happen. This whole process has been surreal, but never did I think I'd be walking into a sperm bank with my mom, my sister, and my girlfriend. Luckily, they're quite professional (not that I really expected less). At this particular place, you go in and talk to the person who helps you with the paper work, and the lab is actually across the hall. So I guess there's that barrier of privacy set up already. So we sat down with the receptionist/agent/account manager (?? what do you call that person ?? sperm banker?) and described the situation. Since I had just had the TURP (transurethral resection of the prostate) surgery a week or two before, there was some question in my mind as to whether I'd be able to give anything at all, so before doing all the paperwork and such I guess I had to see if all the equipment was working properly.
The woman led me across the hall into the lab, where there were folks in clean white lab coats and hair nets working at benches centrifuging this and pipetting that, looking in microscopes and such. Then one of the lab techs hands me a cup and shows me to a room, gives me a knowing smile and says, "Take your time, and don't forget to lock the door." So in the room there's a sink and a small TV stand with an integrated TV/DVD player (with headphones) on it. And of course there's a selection of DVDs and magazines of the type you would expect to find. All in all it's like a 14-year-old's ultimate fantasy refuge, but it feels not a little weird to know that outside are people doing their business, down the hall are construction guys doing some remodeling, and across the hall is your family, waiting to know if you can still ejaculate normally or not. So, yeah, surreal.
Turns out I was able to do the deed and produce a sample, though it was a bit bloody from the surgery, and it certainly didn't feel normal. I closed the cap on the little plastic cup, walked out and gave it to the lab tech. We had to fill out some paperwork, so I started doing that while we waited for the prelim results. About 20 min later they were able to tell us that unfortunately my motility was very low (3% - normal is more like >40%), even though the count was pretty high (40 million). Lots of possible reasons for this, but most likely the cause was the disease itself and/or the trauma that the area had sustained through the TURP procedure. A couple days later we found out there were no moving sperm after a test-freeze of part of the sample. There are of course ways to have a baby without swimming sperm (as long as they're still alive), but the techniques are pretty advanced and involve harvesting eggs and injecting the sperm directly into the egg.
I guess I can't say I was enormously upset by this news. The idea of having kids seemed like such a long ways away, and since there were options for having a baby with my own genetic material, it didn't seem like the end of the world. I guess if I were married already and thinking about kids when all this started happening, I might feel a little more distraught. For now, though, it feels like a future inconvenience (though I know when the time comes it will be a much larger challenge to overcome than the word "inconvenience" implies) and certainly with the surgery still looming it was not really a hurdle I was prepared to put energy into. Still, it was upsetting to know that even this, something that I had taken for granted would be straightforward and natural in the future, was not going to be so simple after all.
We decided to try another sample the following Monday, to see if Friday was just a fluke. After that turned out about the same, we went to discuss the options with the fertility clinic. The motility results were basically the same, and after consulting with a urologist who specializes in fertility, we found out that even drawing samples directly from the testicles would not necessarily result in better motility rates. Everyone said to bank as much sperm as possible before the operation, and so, giving two days rest, we went back one more time on Wednesday to give a final sample.
All in all, I now have 7 or 8 vials processed and frozen in the bank, which will be at least that many attempts at a child. Depending on the treatment plan moving forward, we may even be able to take more directly from the testicles. I suppose we'll have to consult with the docs on that. Certainly through this part of the experience, I have a new appreciation for what a sperm bank could mean to a family, as opposed to what juvenile imaginings might paint it to be.
Woke up today feeling pretty good - I slept through the night without waking up and actually got up at a reasonable hour (around 9:30am). Finally had a couple of bowel movements yesterday (hee, hee, he said poo), though I'm not sure everything's quite awake down there. Really each day the pain seems to get less and less, as I suppose it should, but it's much more noticeable than I anticipated. I almost feel like I'm cheating somehow to have gotten off so easily from the surgery. Almost.
And now to the sperm...
One of the big problems with removing the prostate is that it makes you sterile. So basically, the doctor recommended I bank as much sperm as possible before the operation. Afterwards there's still the possibility of removing sperm directly from the testicles, but once chemo or radiation therapy starts, even that option goes away.
I really hadn't anticipated through all this having to think about how/when I would want to have kids. I suppose I've always thought I wanted kids, maybe one or two, but with everything else going as it was in my life it seemed like that and any decisions related to it would be a long way off. Now all of a sudden I was having to plan years in advance just to have the chance to have kids somewhere down the line.
So I had my first appointment at a local sperm bank on the Friday (10/12/07) before the surgery was supposed to happen. This whole process has been surreal, but never did I think I'd be walking into a sperm bank with my mom, my sister, and my girlfriend. Luckily, they're quite professional (not that I really expected less). At this particular place, you go in and talk to the person who helps you with the paper work, and the lab is actually across the hall. So I guess there's that barrier of privacy set up already. So we sat down with the receptionist/agent/account manager (?? what do you call that person ?? sperm banker?) and described the situation. Since I had just had the TURP (transurethral resection of the prostate) surgery a week or two before, there was some question in my mind as to whether I'd be able to give anything at all, so before doing all the paperwork and such I guess I had to see if all the equipment was working properly.
The woman led me across the hall into the lab, where there were folks in clean white lab coats and hair nets working at benches centrifuging this and pipetting that, looking in microscopes and such. Then one of the lab techs hands me a cup and shows me to a room, gives me a knowing smile and says, "Take your time, and don't forget to lock the door." So in the room there's a sink and a small TV stand with an integrated TV/DVD player (with headphones) on it. And of course there's a selection of DVDs and magazines of the type you would expect to find. All in all it's like a 14-year-old's ultimate fantasy refuge, but it feels not a little weird to know that outside are people doing their business, down the hall are construction guys doing some remodeling, and across the hall is your family, waiting to know if you can still ejaculate normally or not. So, yeah, surreal.
Turns out I was able to do the deed and produce a sample, though it was a bit bloody from the surgery, and it certainly didn't feel normal. I closed the cap on the little plastic cup, walked out and gave it to the lab tech. We had to fill out some paperwork, so I started doing that while we waited for the prelim results. About 20 min later they were able to tell us that unfortunately my motility was very low (3% - normal is more like >40%), even though the count was pretty high (40 million). Lots of possible reasons for this, but most likely the cause was the disease itself and/or the trauma that the area had sustained through the TURP procedure. A couple days later we found out there were no moving sperm after a test-freeze of part of the sample. There are of course ways to have a baby without swimming sperm (as long as they're still alive), but the techniques are pretty advanced and involve harvesting eggs and injecting the sperm directly into the egg.
I guess I can't say I was enormously upset by this news. The idea of having kids seemed like such a long ways away, and since there were options for having a baby with my own genetic material, it didn't seem like the end of the world. I guess if I were married already and thinking about kids when all this started happening, I might feel a little more distraught. For now, though, it feels like a future inconvenience (though I know when the time comes it will be a much larger challenge to overcome than the word "inconvenience" implies) and certainly with the surgery still looming it was not really a hurdle I was prepared to put energy into. Still, it was upsetting to know that even this, something that I had taken for granted would be straightforward and natural in the future, was not going to be so simple after all.
We decided to try another sample the following Monday, to see if Friday was just a fluke. After that turned out about the same, we went to discuss the options with the fertility clinic. The motility results were basically the same, and after consulting with a urologist who specializes in fertility, we found out that even drawing samples directly from the testicles would not necessarily result in better motility rates. Everyone said to bank as much sperm as possible before the operation, and so, giving two days rest, we went back one more time on Wednesday to give a final sample.
All in all, I now have 7 or 8 vials processed and frozen in the bank, which will be at least that many attempts at a child. Depending on the treatment plan moving forward, we may even be able to take more directly from the testicles. I suppose we'll have to consult with the docs on that. Certainly through this part of the experience, I have a new appreciation for what a sperm bank could mean to a family, as opposed to what juvenile imaginings might paint it to be.
Tuesday, October 23, 2007
Out of the Hospital - 10/23/07
Well so i don't know if the tone of this is going to change now that I know that people might actually read it. . . I guess we'll see. I'm kinda new to the whole blog thing, and so it seems to me the conundrum is chronology, really. Like, ideally in this post I would talk about the next thing that happened after the last post, right? But it seems like what people probably really want to know right now, is how I'm doing right now, eh? Cuz if I just go chronologically, who knows how long it'll be til I get to now, and by then, something crazy exciting may have happened... Ah, and so I guess I answered my own question - the nature of the blog has already changed simply by the admission that I'm considering the will of the people :P (well, the potential people who may be reading this...). I wonder if they'll dare/care to read the other posts? I wonder if I'll start referring to them/you in the second person instead of third? Anyone ever read Dear Mr. Henshaw? It's one of those Judy Blume type books where the kid starts a diary but doesn't know who his audience is so he pretends he's writing to Mr. Henshaw, who I think was one of his teachers or something.
Well, okay, then, I guess I'll start with now, and fill in bits and pieces later. So, I got out of the hospital yesterday (10/22) and was feeling decent though slightly nauseated (as a side note, the word "nauseous" is actually an adjective describing the thing that makes you "nauseated" - A quick search gives you an explanation. Even I usually just say nauseous, but it's funny to hear some of the docs and nurses use nauseated, even after you describe your symptoms as nauseous: "Oh, I'm feeling a little nauseous." "Feeling nauseated, eh? Well I'll see if I can get you something for that." - well I guess it's funny to a grammar/word usage freak like myself...). They let me start eating solid foods a couple days ago, so I'm eating fairly normally, which is nice after a few days of only clear liquids, nasty diarrhea inducing liquids, and no liquids at all... but that's for another post.
Anyhow, so I've got Vicodin to keep me out of too much pain, but every day the pain seems less and less. It hurts mostly when I get up to walk around, or when I try and cough or laugh or basically do anything that uses the abdominal muscles. For instance, I was just watching some Flight of the Conchords clips on YouTube, which had me laughing so much I really can't watch anymore right now. My favorite so far is "The Humans are Dead". So that's the main thing I guess, is just abdominal pain. I've got stitches from the incision just below my belly button - the scar is about 6 inches long though I suppose not quite a scar yet - and a little hole next to the incision area where they had a drainage catheter stuck for a while. I have to keep that area dry for a couple days but it should heal up pretty quickly (first order of business when I got home was to Saran wrap the catheter drain area so I could take a real shower). They also shaved the pubic area some, but not thoroughly, so it felt strangely prickly when I first ran my fingers down there. When I first got out of surgery that whole area would kind of jump at the touch when people tried to feel around, but it seems to be much less sensitive now.
Lying down generally feels pretty good, sitting can be okay, but standing up and walking are still the most painful (though it's also the best thing for me to be doing). I have a Foley catheter inserted in my penis to drain out the bladder, but that doesn't cause too much aggravation. I can switch it from a big bag that takes a long time to fill up to a leg bag that I can strap to my calf. Inside the house the big bag is actually more convenient, since you want to have it below your bladder at all times and you can't put your legs up when you have the leg bag. Funny thing is that the last time I had a catheter they didn't give me a big bag, which I guess is pretty important when you're sleeping to keep the urine from flowing back into your bladder and causing an infection, which I think is exactly what happened. I guess you can't trust the emergency room to give you comprehensive information or treatment... For those of you following along, that infection episode was right before I had the TURP surgery.
So, yeah, all in all, I feel pretty good right now. Don't have a whole lot of energy, but my mom's keeping me company at home and there's plenty of entertainment (books, TV, video games, the world wide internet...). Frankly the hospital stay was much shorter than I expected, so I'm just happy to be out and recovering so quickly.
Well, okay, then, I guess I'll start with now, and fill in bits and pieces later. So, I got out of the hospital yesterday (10/22) and was feeling decent though slightly nauseated (as a side note, the word "nauseous" is actually an adjective describing the thing that makes you "nauseated" - A quick search gives you an explanation. Even I usually just say nauseous, but it's funny to hear some of the docs and nurses use nauseated, even after you describe your symptoms as nauseous: "Oh, I'm feeling a little nauseous." "Feeling nauseated, eh? Well I'll see if I can get you something for that." - well I guess it's funny to a grammar/word usage freak like myself...). They let me start eating solid foods a couple days ago, so I'm eating fairly normally, which is nice after a few days of only clear liquids, nasty diarrhea inducing liquids, and no liquids at all... but that's for another post.
Anyhow, so I've got Vicodin to keep me out of too much pain, but every day the pain seems less and less. It hurts mostly when I get up to walk around, or when I try and cough or laugh or basically do anything that uses the abdominal muscles. For instance, I was just watching some Flight of the Conchords clips on YouTube, which had me laughing so much I really can't watch anymore right now. My favorite so far is "The Humans are Dead". So that's the main thing I guess, is just abdominal pain. I've got stitches from the incision just below my belly button - the scar is about 6 inches long though I suppose not quite a scar yet - and a little hole next to the incision area where they had a drainage catheter stuck for a while. I have to keep that area dry for a couple days but it should heal up pretty quickly (first order of business when I got home was to Saran wrap the catheter drain area so I could take a real shower). They also shaved the pubic area some, but not thoroughly, so it felt strangely prickly when I first ran my fingers down there. When I first got out of surgery that whole area would kind of jump at the touch when people tried to feel around, but it seems to be much less sensitive now.
Lying down generally feels pretty good, sitting can be okay, but standing up and walking are still the most painful (though it's also the best thing for me to be doing). I have a Foley catheter inserted in my penis to drain out the bladder, but that doesn't cause too much aggravation. I can switch it from a big bag that takes a long time to fill up to a leg bag that I can strap to my calf. Inside the house the big bag is actually more convenient, since you want to have it below your bladder at all times and you can't put your legs up when you have the leg bag. Funny thing is that the last time I had a catheter they didn't give me a big bag, which I guess is pretty important when you're sleeping to keep the urine from flowing back into your bladder and causing an infection, which I think is exactly what happened. I guess you can't trust the emergency room to give you comprehensive information or treatment... For those of you following along, that infection episode was right before I had the TURP surgery.
So, yeah, all in all, I feel pretty good right now. Don't have a whole lot of energy, but my mom's keeping me company at home and there's plenty of entertainment (books, TV, video games, the world wide internet...). Frankly the hospital stay was much shorter than I expected, so I'm just happy to be out and recovering so quickly.
Friday, October 12, 2007
Diagnosis
Wow. So it's a bit late for this, but frankly things have been busy, and I wasn't sure this was the best place/forum for posting stuff. Anyhow, here goes: I have cancer. That sounds weird. Somehow it sounds so much better to say, "Well they found a carcinosarcoma in my prostate." Okay, maybe not sooo much better, but it seems to sound better. I have cancer. It doesn't even sound like a proper sentence. It's like, "I have book" or "I have monopoly board." I suppose it can't be "I have THE cancer." No, that's not quite right either. Well, in any case, I have it, and it's there, and hopefully next Friday they'll take it out.
Lessee, do we want all the details? Why not, as this is the first post on the subject. Here's a brief run down of what happened:
June - started seeing blood in my urine, went to see the urologist. Lots of blood tests, urine tests, everything negative - no fever, no chills, no signs of infection.
July - first aspiration - dude shoves a probe up my butt and sticks a needle in the prostate - they drain out fluid, they culture it for bacteria - nada.
August - second aspiration - pretty much the same as the first, a bit of fluid,
not much to go on - but they did find... e. coli! So... antibiotics for that, but most likely it was a contamination from the needle being in the rectum and such
Sept - at some point around the 5th something got really inflamed in my left buttocks and there was this lump there. Then, it became harder and harder to urinate, until I really couldn't empty my bladder and had to go to the ER. There they put in a Foley catheter, which I took home for a couple weeks. I also had a fever going into the ER and a little afterwards, but some antibiotics and vicodin helped keep that and the pain from the butt lump in check.
Mid Sept - Finally, I went in for a third transrectal ultrasound and biopsy of actual tissue - they still didn't find much, mostly dead tissue and a little bit of cartilage - that sent up some flags. Prostate has no business with cartilage. They tested for germ cell tumors but came up negative.
End sept - I was scheduled for a TURP (transurethral resection of the prostate) to grab out more tissue and get a better reading on what this thing is. Of course a few days before the surgery I started having intermittent feelings of urgency that would make me clench up my abdominal muscles and such. Then I started having fevers, and at one point they hit 101.5, so into the hospital I went. They gave me IV antibiotics for about a day and a half and were then able to do the surgery once the fever came down. They suspect this was a side infection from having the catheter in.
Oct. 4 - Diagnosis day. It's a carcinosarcoma. It's rare, and it needs to come out.
Oct. 5 - Unceremonious call from the oncologist - they'll need to remove the prostate, and maybe the bladder. That was a tough day.
Oct. 6 - CT scan to see if it's grown or changed in anyway. Fortunately it looks about the same on the scan and doesn't seem to have spread anywhere. Two lymph nodes on the right side are enlarged, but this could be from the infection/prostate inflammation after surgery.
Oct. 10 - Second opinion appt. at UCSF. The doctor lays out some of the possibilities given the pathology, we schedule a follow up for next week on Wed.
Oct. 11 - The urologic oncologist lays out the plan, and it's not terribly specific. They'll have to remove the prostate, and then they'll see when they're doing the surgery whether or not they'll have to remove the bladder. They can't see the distinction, but they can do real-time biopsies. If they do have to remove it, they can reconstruct a pouch from part of the bowel, but then I have to empty that with a catheter through a stoma (port) in the skin every 4-6 hours. If they take just the prostate, they can reattach the bladder to the urethra, I go home with a catheter for two weeks and eventually I should be able to pee normally. I'm hoping to wake up with a catheter strapped to my leg. Chemo and radiation therapy will be dependent on what the prostate tissue looks like. Surgery is scheduled for Friday the 19th. If that's too soon, we'd have to wait until the 31st...
Oct. 12 - Schistosomia-what? So, at some point throughout all this, the infectious disease doctors found antibodies for the schistosoma worms (freshwater worms found in exotic locales) in my blood. They checked urine and stool and found no eggs, and the pathologists found nothing either. I went in for a follow up appointment with ID and they said, well let's treat it anyway. The treatment? Two sets of pills twice a day for one day. Would that were the whole problem...
Well, that brings us mostly up to date. . .
Lessee, do we want all the details? Why not, as this is the first post on the subject. Here's a brief run down of what happened:
June - started seeing blood in my urine, went to see the urologist. Lots of blood tests, urine tests, everything negative - no fever, no chills, no signs of infection.
July - first aspiration - dude shoves a probe up my butt and sticks a needle in the prostate - they drain out fluid, they culture it for bacteria - nada.
August - second aspiration - pretty much the same as the first, a bit of fluid,
not much to go on - but they did find... e. coli! So... antibiotics for that, but most likely it was a contamination from the needle being in the rectum and such
Sept - at some point around the 5th something got really inflamed in my left buttocks and there was this lump there. Then, it became harder and harder to urinate, until I really couldn't empty my bladder and had to go to the ER. There they put in a Foley catheter, which I took home for a couple weeks. I also had a fever going into the ER and a little afterwards, but some antibiotics and vicodin helped keep that and the pain from the butt lump in check.
Mid Sept - Finally, I went in for a third transrectal ultrasound and biopsy of actual tissue - they still didn't find much, mostly dead tissue and a little bit of cartilage - that sent up some flags. Prostate has no business with cartilage. They tested for germ cell tumors but came up negative.
End sept - I was scheduled for a TURP (transurethral resection of the prostate) to grab out more tissue and get a better reading on what this thing is. Of course a few days before the surgery I started having intermittent feelings of urgency that would make me clench up my abdominal muscles and such. Then I started having fevers, and at one point they hit 101.5, so into the hospital I went. They gave me IV antibiotics for about a day and a half and were then able to do the surgery once the fever came down. They suspect this was a side infection from having the catheter in.
Oct. 4 - Diagnosis day. It's a carcinosarcoma. It's rare, and it needs to come out.
Oct. 5 - Unceremonious call from the oncologist - they'll need to remove the prostate, and maybe the bladder. That was a tough day.
Oct. 6 - CT scan to see if it's grown or changed in anyway. Fortunately it looks about the same on the scan and doesn't seem to have spread anywhere. Two lymph nodes on the right side are enlarged, but this could be from the infection/prostate inflammation after surgery.
Oct. 10 - Second opinion appt. at UCSF. The doctor lays out some of the possibilities given the pathology, we schedule a follow up for next week on Wed.
Oct. 11 - The urologic oncologist lays out the plan, and it's not terribly specific. They'll have to remove the prostate, and then they'll see when they're doing the surgery whether or not they'll have to remove the bladder. They can't see the distinction, but they can do real-time biopsies. If they do have to remove it, they can reconstruct a pouch from part of the bowel, but then I have to empty that with a catheter through a stoma (port) in the skin every 4-6 hours. If they take just the prostate, they can reattach the bladder to the urethra, I go home with a catheter for two weeks and eventually I should be able to pee normally. I'm hoping to wake up with a catheter strapped to my leg. Chemo and radiation therapy will be dependent on what the prostate tissue looks like. Surgery is scheduled for Friday the 19th. If that's too soon, we'd have to wait until the 31st...
Oct. 12 - Schistosomia-what? So, at some point throughout all this, the infectious disease doctors found antibodies for the schistosoma worms (freshwater worms found in exotic locales) in my blood. They checked urine and stool and found no eggs, and the pathologists found nothing either. I went in for a follow up appointment with ID and they said, well let's treat it anyway. The treatment? Two sets of pills twice a day for one day. Would that were the whole problem...
Well, that brings us mostly up to date. . .
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