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.

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.

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.

Friday, October 12, 2007


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. . .