Ooh! Ooh! PICC me! PICC me!

Happy (Belated) Turkey Day! (11/24/07)

So this week was another exciting episode in the world of doctor appointments, pokings, and pseudo-information gathering. As you may have noticed, I've started adding pictures. Some will be random, but some, like the one to the right, will be relevant. That thing on my right arm is the dressing for the PICC (peripherally inserted central catheter) that will allow the docs to put in the chemo drugs without burning out my veins. Ah, but I'm getting ahead of myself. It all started bright and early Monday morning...

(Wayne and Garth strafe across the screen, wiggling their arms and fingers up and down and saying "Doo de-loo! Doo de-loo! Doo de-loo!)


Slim PICC-ings
(Caveat: This post is all about PICCs. If you have no interest in such things - well, you have free will and all, so make your own decisions about whether you want to read on.)

Woke up bright and early on Monday morning (about 6:40am) to get to the hospital to have my PICC inserted. Typically chemo drugs can be pretty nasty on the veins and irritate the smaller ones (like those in your arm), so they usually want you to get a central line inserted. That way the meds can go directly to your heart and get pumped through the body from there. From my understanding, you've got two choices: a PICC, which goes in through the arm and up almost into the heart, or a port, which goes directly into the chest (and requires a minor surgery). Both are pretty much the same functionally, except that I'm not supposed to lift more than 15 pounds or do repetitive motions with my PICC-arm. Plus the PICC is a lot easier to pull out if it gets infected.

Anyhow, we got to the hospital bright and early, and actually, before the PICC saga could begin, I had to get an injection of radioactive dye for my bone scan later that afternoon. So first I went to nuclear medicine around 8am to get injected with some stuff that would circulate through my body and make my bone marrow glow (on the imaging scan) if anything suspicious showed up. My mom came with me for what would turn out to be a long, long day. The dye injection is just like any other injection, except the syringe comes in an ominous looking lead tube holder. It's a dose that's less than a CT scan, but for folks who are handling the stuff every day, it's good to have some protection.

After that, it was off to get a PICC line. From previous discussions, I had gathered the PICC was a pretty simple thing to put in - I thought it would take a few minutes, and then my mom and I would get to go home for a few hours while we waited for the radioactive dye to circulate and we could return for the bone scan itself. Oh, not so. It turns out that putting in a PICC is a fairly involved procedure, and there are only 5 or so nurses in the entire hospital trained to do it (and that's what they do, all day every day). Compared to surgery, I suppose it's not that bad, but it definitely takes a bit of time.

Step 1 - I go into the room and lie down on the gurney with my left arm straight out to the side, resting on a table. The nurse (Darcia) does an ultrasound of my arm to find a good vein to put the catheter in. Hopefully it's not too close to an artery or a nerve... luckily mine wasn't.

Step 2 - The nurse scrubs her hands and opens up this package wrapped in sterile blue cloth. She puts a sterile cloth over your arm with a hole in it for the site on the arm. She folds up one side of the cloth so that I can't see, or more importantly, breathe on my arm. She also gets on a sterile gown, hairnet, and sterile gloves to handle all the tools.

Step 3 - She scrubs my arm with about four different kinds of scrubs (soap, alcohol, some chemical whose name I can't remember, and that same chemical combined with alcohol). Each scrub has for some reason its own applicator, too - one's a sponge, one's a sponge attached to the end of a handle in which the scrub liquid sits (I think you can kind of crack the handle like a glowstick to make the liquid come out), one's a set of three oversized q-tips (alcohol I think), and one leaves your arm a nice shade of blue that makes it look like you've either been bruised really badly or had a run-in with an ornery smurf.

Step 4 - At this point, the blue cloth is shielding my view of the goings on, but roughly this is what happened next. She gives me three shots of lidocaine to numb the area (the shots themselves are probably the most painful part of the whole thing), and sticks the PICC line in with its associated guidewire. At this point my skin is mostly numb but I do feel a bit of pressure as she pushes the catheter in. She sutures the little holder clamp to my skin with one stitch, and then ties knots around the clamp to keep the catheter in its place.

Step 5 - The nurse puts on a sterile dressing so that we can walk down the hall to get a chest X-ray and verify the placement. At the X-ray area, she has a radiologist read the X-ray (here's where things start going badly). According to the radiologist, the catheter needs to go in a few more inches. Sure, why not? He's skilled at what he does, right? Anyhoo, we go back to the PICC room and Darcia pushes some more length into my arm/chest. Then, she bandages me up, and I'm good to go. . . or so I think. . .

As it turns out, radiologists don't always know what the heck they're doing. After getting the PICC, we went to grab some quick food before the bone scan, and I noticed that when I bent over in a certain way I would feel some weird heart palpitations. I thought that was a bit odd, so we went back to the PICC office to get Darcia to take a look. According to the X-ray (or rather, the radiologist's read of the X-ray) the PICC was in the right place, just above the right atrium in the superior vena cava. It's rare, but sometimes the PICC can "tickle" things in just the right way to cause an arrhythmia. Well, since I had to get to the bone scan quickly, Darcia decided to pull back the catheter about 1.5 cm without an additional X-ray, to get it away from any areas where it might cause issues. I felt okay after that and went to the bone scan, where I basically took a little nap on the table as the scanner moved over my body for 40 minutes (actually it was my body that moved, but you get the picture). We left the hospital around 2pm or so, went to the grocery store, and went back to the apartment where my mom was staying. All was fine and dandy til I sat on the couch a certain way, and there it was again - weird palpitations. Urgh. At this point it was getting close to 4:30 or so, and we called to find out if the PICC nurses were still around. After leaving a couple messages, we decided to just go back to the hospital. Darcia was luckily still there with her colleague, Nadinne, and so she took me to get another X-ray, after which she pulled the PICC back another 2 cm. So finally, I went home, thinking the problem had been solved.

Later that night, though, as I was sleeping I turned onto my left side, and had - you guessed it - palpitations. So, the next morning I called my adviser, who happens to be a cardiologist specializing in ultrasound, and he suggested coming into the hospital so he could take a look. Once again, we drove to Stanford (we had another appointment there that day anyhow), and he snuck us quickly into an empty room to do the ultrasound. David (my adviser) confirmed that indeed the radiologist had probably read X-ray incorrectly, because the tip of the PICC was well into my right atrium and almost at the valve leading into the right ventricle. So, once again we trekked down to the PICC office, where Nadinne (one of the other PICC nurses) was able to pull the PICC out another 4 cm. David even printed out a copy of the X-ray showing how much needed to be pulled out. So all in all, the PICC actually needed to come out about 7.5 cm from where it was initially. We suspect that it's mostly the radiologist's fault, since after the first X-ray, he suggested that Darcia actually should push the PICC in about that much. Argh - I think she had the thing in the right place to begin with. . .

Anyhow, that's the PICC ordeal in a long-winded nutshell. On the bright side, the CT folks at the children's hospital were ecstatic to see that I had a purple Power PICC when I went for my chest CT on Wednesday. Apparently it was the first of the kind they had seen, and they were able to use it to inject the contrast for the CT. Usually when people come in with a different kind of PICC, the nurses there have to tell them they have to get an IV anyway (which sucks, since one supposed benefit of the PICC is that it keeps you from having to get stuck all the time for tests). Why was I at the children's hospital, you ask? Well, that's for another post...

My PICC nurse, Darcia, applies a dressing to the PICC entry site. Notice the sterile gown, mask, and headgear...


Here's what the entry site looks like up close. The disk is a "Biopatch", which helps to curb infection.

Close up of the lines that they will use to infuse the drugs, draw blood, inject contrast, etc.

Bumps, lumps, and stumps

Thursday (11/15/07)

Well, space fans, today was supposed to be my first day of chemotherapy, but this rhabdo thing has thrown a wrench into the oncologists' plans. Treatment for rhabdo and carcinosarcoma are very different, so we need to wait for some sort of grand pathology consensus before proceeding. Stanford is going to do some more stains to look at this rhabdo diagnosis - in addition, we are sending slides and tissue to Emory for a third "tie-breaker" opinion. Hopefully they won't come up with something brand new. So, yes, once again, it's time to play the waiting game...

"Awww, the waiting game sucks! Let's play Hungry Hungry Hippos!" (Homer)

On the plus side, I've switched medical oncologists, since mine was going away for 10 days, and the new one is awesome. She's really on top of things and had already started to make things happen by the time we met with her. She's also the best sarcoma specialist at Stanford, so I feel I'm in good hands. I'll be getting a bone scan at some point, just to make sure it hasn't spread to the bone marrow, and on Monday I'm getting a PICC installed (it's a long catheter that goes into the arm and up into the larger vessels so they can infuse the chemo drugs without irritating the skin and smaller vessels too much). That way, when we hear the final diagnosis, I'll be all ready to go for chemo.

Still, on top of all this, there's more bad news. For some background, the worst manifestation of this disease started back in Sept right after Labor Day, when all of a sudden I couldn't urinate anymore (well, I wasn't fully voiding anyway) and had to go to the ER. I had felt a lump on my (shield your cyber eyes if you don't want to visualize) left buttock down near the midline and close to the prostate area a couple days before. It was there for a while, and I tried to have people feel it and figure out what it was. In the ER they didn't think much of it, and then it seemed to go away afterwards. It seemed to come and go over the course of the next couple weeks (bizarre, eh?) - it was there after my TURP surgery, but then it went away. By the virtue of that fact alone, the docs seemed to think it was no big deal ("Tumors don't come and go that quickly," said the urologic oncologist). In addition, it seemed to time its disappearances for when I was seeing my oncologist, so he never really felt it. A few days ago, it came back. Luckily (or not), it stuck around for my appointment yesterday, and my new superstar oncologist wanted to do a fine needle aspiration to figure out if it was just pus or if it was something else. Of course, you can probably guess it was something else. They came back 5 minutes later and said something was suspicious. Later that night, superstar called and said there were indeed tumor cells in the lump.

So now, somehow, the insignificant "butt bump," an in-joke among my family for the past couple months, is a real enemy, sitting there and taunting me. "Ha ha, none of your scans went low enough to catch me, eh?" (I imagine an evil French accent) "I am so elusive and slip away just when you're going to try and show me to a doctor..."

URRRGHHH.

I guess the good news is, it's still mostly contained - if it's rhabdo, chemo should take care of it, and if it's not rhabdo, surgery shouldn't be too bad. But really? AAAAARRRRGGGHHHH.

Mo' Info-mation, pleez

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!

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...

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...