A photo post. . .

(02/19/09)

Step 1: Remove lung nodule. Check.

Three wounds, four days after surgery. Minimally invasive surgery is amazing.

Step 2: Defend Thesis. Check!!!!

Today I'll be talking about . . .

Immediately afterwards. . . Wait, I haven't had my closed session yet!

Me and my committee. Okay, now I can relax a little. . .

Dinner with some awesome peeps. . .

And of course, cake!!!

Step 3: Go to Mexico!!!!

Out!

(2/3/09)

Step 1 - Remove nasty lung nodule. Check.
Now on to Step 2 - Defend Thesis. (Feb. 13th, 9am, Packard 202 at Stanford)

I'm out of the hospital, minus a chunk of my lung that I left there for the pathologists to poke and prod. We showed up yesterday at 8am for a 10am surgery that started around 11 and finished before noon. Strangely, the waiting and anticipation beforehand was more annoying than anything else. This time I wasn't really nervous, since I knew exactly what they were going to do and it was supposed to be pretty straightforward (luckily, it was). I was one of just a few patients in the pre-op area at first; then more and more were brought in while I answered the usual random questions ("Do you have allergies to medications? Does anyone at home hurt or harm you? Have you fallen down in the last six months?"). My mom and sister came in after the question/answer session with the nurse, and we basically waited around for half an hour or so. The attending anesthesiologist had a laughably gruff bedside manner - he basically rattled off a bunch of words in sequence in a total monotone - but I guess I didn't mind since I'd been through surgery before. The resident was perfectly friendly and intelligible, and luckily he didn't have the med student practice putting an IV into me. That honor was left to the next lucky patient. My surgeon said a quick hello and then scurried off to prepare things. Finally it was time to go in. I remember the anesthesiology resident giving me an injection and putting the oxygen mask over my nose and mouth, then voila, I woke up in the recovery room with a sore throat (from the breathing tube) and some pain in my left side (from the, um, holes they poked there).

They moved me to my room in one of the post-surgery wards, and the next few hours were interesting. At first I was pretty awake, and the pain wasn't terrible, until I tried to move around. I got up from my bed to sit in the chair for a bit, and then the pain shot up on my left side, so the nurse gave me some IV pain killers, which made me instantly drowsy, woozy, and a bit dizzy, such that I had to get back in bed again. Then I felt nauseated, so she gave me some anti-nausea meds, and I basically spent the next 4-5 hours drifting in and out of sleep, as my various visitors will attest to (thanks for coming, guys!). Then, since I couldn't really get up to walk around, they kept these leg pump cuffs wrapped around my legs to prevent deep vein thrombosis. Basically, they're like blood pressure cuffs that keep inflating and deflating to keep blood flowing in your legs and prevent clots. If you just imagine an octopus or something alternately squeezing each of your legs while making a loud, low-pitched buzzing noise every couple of seconds, you'll get the idea. This, plus the gurgling water pump they had hooked up to a chest tube to drain the blood out of my chest and my neighbor's snoring made for a tough sleeping situation. Also there was the pain, dry mouth, and general discomfort from just having had surgery. Oh yeah, and of course don't forget the nurses and technicians coming into the room every couple of hours to draw blood, check temperature and blood pressure, etc. I'm sure I've said it before, but a note to anyone who has to spend a night in the hospital: be sure to ask for ear plugs!

Anyhow, this morning was much better, although the pain was still pretty bad when I got up to sit in the chair and nibble at my breakfast. It turned out, though, that the bulk of the pain was due to that stupid drainage tube stuck in my back. I spent most of the morning waiting for the resident to come by and take the thing out, and meanwhile I kept getting conflicting reports of when I was going home - my doctor (the surgeon) said they would discharge me later in the afternoon, then his nurse practitioner came by and said it might still be one or two days after the tube came out. All in all, though, the morning after was much more pleasant than the night before. Finally, the resident came in to pull the tube out, but she wanted to give me some pain medication first - having learned from the previous day's response, I negotiated a reduced dose of Dilaudid (Strong stuff! Either that, or as my sister said, I'm a drug lightweight). While she pulled the tube out I had to puff up my lungs by blowing against my wrist so that no air got in the space between my lungs and chest cavity. It definitely stung a bit, but I'd have to say insertion and removal of urethral catheters take the cake for pain and discomfort. Once the tube was out, the pain was immediately 10x better, and my range of motion increased dramatically. I haven't even needed any pain medication since then, though I'll probably take some tonight before I go to bed.

Now I just have to wait for the pathology to come back. While I continue to prepare for my defense, of course. One step at a time. . .

Freakin' frik frik

Happy Chinese New Year's Eve!
(01/25/09)

Yes, I realize the subtitle here is a little incongruous with the main title of this post. Today is a day for celebration (or at least the start of celebration, as Chinese New Year usually lasts for weeks, for some reason), but I have some unfortunate news to share as well.

Remember those pesky lung nodules I had throughout the past year? They're the reason I was denied from the medium risk clinical trial and put into the high risk category. They were on my initial scans but then didn't change too much, and so we thought that perhaps they weren't anything to worry about in the first place (since they weren't responding to the chemo). Well, one of them is misbehaving and has grown since my last scan in October. It was about 4mm and is now up to 9mm. That's still pretty small, but my doctor and the tumor board (that's the collection of doctors, surgeons, and radiologists who meet every week to discuss cases) agree that it needs to come out. Luckily, the nodule is pretty close to the surface in my upper left lung, so it should be pretty easy to get to in a minimally invasive way. They'll poke three holes in my left side and go in with laparoscopic tools to cut out the offending bit of tissue. I should only be in the hospital for a couple days (surgery will be on Feb. 2).

Of course I found all this out after scheduling the date for my defense on (of all days) Friday, the 13th of Feb. I guess we'll just have to see how things go, but if I can stay on track and defend, then I'll at least get that hurdle out of the way. Writing and turning in the dissertation shouldn't be too bad after that. I have a lot written and have just a couple more experiments to re-do so we can publish our data.

How do I feel? Honestly, kind of crappy. I'm trying to stay optimistic, I really am. It's just tough. Uncertainty is such a bear. Not a teddy bear, either. Anyhow, I've been reading different books about good nutrition and am slowly working on changing my eating habits, but honestly who really knows what will work in the end? I guess you just try and do everything you can and hope for the best. On the plus side, my strength is definitely coming back, and I've been able to climb more and more, which is great.

If I can get through this month I think I'll be golden. . . have surgery, defend, and then spend a few days in sunny Mexico. . . should be good. . .

DONE!!!

(12/30/08)

Well, folks, it's done. Over. Kaput. Finis. In the end, I didn't have to do the last cycle after all. I have been showing symptoms of bladder damage these past few cycles, and so my doctor decided that the risk of causing permanent damage outweighed any marginal benefit from finishing this last cycle. So when we got the lab results during my appointment yesterday, she said, "You know what? You're done." And that was it. I was a bit in shock, though I kind of suspected she might say this, given the symptoms I'd been having.

So, after more than a year of crap crap crap, I'm finally done, and right before the new year (I know, it's really just an arbitrary date, but I'll take it). I'll still have regular checkups for a while, and the longer I don't have disease the better the prognosis (although there's not enough data to actually give a number for prognosis). My doc says that they usually start counting from the time that you are disease-free, and for me she says this would probably be after my radiation treatment. I don't know that it really means that much, but by that rationale, I already have almost a year disease-free under my belt. Once I get to year five I can breathe much more easily.

For now, it's time to live for real again. . . WOOOOOOOOOHOOOOOOOOOOO!!!!!!!!!!

The final countdown

One more to go!
(12/18/08)

I'm kind of in shock. This year has gone by so quickly, and now that I'm facing my last chemo treatment, I don't really know how to feel. Round 16 came and went last week, with the usual crappiness feeling for 2-2.5 days, and now I'm back up and running. I had a chat with my adviser last week about what it will take for me to defend and finish up. I've started the beginnings of thinking about what I'm going to do after I graduate. It's all very strange. This year, with all the starts and stops and interruptions, I've tried to get stuff done and get myself to feel productive, but I also definitely took it easy when I wanted to and for the most part prioritized fun, family, and friends. Still, the prospect of working hard for the final push is actually kind of appealing - having full energy to tackle my research and other things will be exciting.

My last cycle is on the 29th, so a just a couple days to recover from that and I'm home free! Aside from bimonthly checkups and semi-annual scans, I get to return to a normal-ish life. Better yet, I get to figure out what that means. It's pretty exciting, though a little daunting. And of course there's the heavy cloud of uncertainty - did it work? Was the triumvirate of surgery/chemo/radiation enough to thwart the bizarre rhabdo-beast? I have no idea. No one else does either. There's just not much data for young adults and this disease. In general, including kids, I've seen upwards of 80% cure rates posted. That's promising at least, but not entirely comforting.

Knowing more information isn't necessarily better, though. This year four of my good friends' moms have gotten breast cancer (one was a recurrence). One day, one of my research mentors pointed down the hall of offices in our building at the doors of all his colleagues whose families had been touched by breast cancer. There's tons of data on breast cancer, but all that does is give you more certain uncertainty. Once you're staged and the treatment is done, you may know exactly what chances you have, but that's rarely reassuring for the individual. There's always the lingering question - which group will I fall into? The never-have-to-face-this-again group, or the . . . other one? My mom, who is a statistician, is always skeptical of data. Even if there's a .0001% chance of something happening, if you are in that group, it's 100% your problem. Basically, it just sucks, no matter what.


It could be worse

During sophomore year of high school, I went through a really angsty phase where I would get super moody, sulk around, and play "Everybody Hurts" by REM incessantly (I know some of my friends are probably reading this and groaning with rolled eyes at the memory). Of course I still have moods now, but I like to think that they're, um, more sophisticated. In any case, people would always say, "I don't like that song - it's depressing." But to me, it's actually quite the opposite. To know that everyone suffers to some extent gives me some comfort - not in a sadistic, schaudenfraude sense, mind you, but in the sense that it means people live with pain all the time, and yet they find the strength and courage to move past it.

As a result of this mode of thinking, I often try to count to myself the numerous ways in which my situation could be worse. I try not to be too outlandish about it, but sometimes it does go there. I mean, I found the disease relatively early, so that's a plus. It hadn't spread to my bladder, so I get to pee in the normal way still. Definitely a plus. The little nodules in my lungs appear to not be metastasis after all, I'm lucky to be in a place where I can get top-notch medical care, etc., etc. I suppose this could seem depressing to some, but sometimes looking at all the bad things that could have happened makes the good things (or even just the lack of bad things) all the sweeter.

Anyhow, for now, I'm looking forward to a new, fresh year. . .

Like cake

Serena cheering me through Cycle 15/17.

(11/17/08)

Numba 15 is done! It was like liquid cake, fed intravenously through my chest and bringing about a slight burning sensation in my nostrils. Okay, so the analogy doesn't work that well, but what I mean is, the day seemed to go by with few problems. I had to get poked three times in my double-lumen port, though - once in the morning to access one lumen for bloodwork, and then twice after my doctor's appointment before getting treatment, because the first needle was defective. No big deal, but we did determine that using the cold spray that they have does in fact help reduce the pain of inserting the needle (we did the first one without the spray and the second one with the spray. Normally I have to smear on this lidocaine cream half an hour beforehand to numb the area, but since I had done that before labs earlier in the day, it had worn off by the time I was getting treatment. Anywayz. . . ). I had a little bit of nausea after lunch, so I took an Ativan, and after claiming to my nurse Kyla that Ativan doesn't actually make me that sleepy, I promptly fell asleep for the rest of the afternoon until about 4pm. We got out of there pretty late, about 7:30pm, but I feel pretty good, relatively speaking. This was a Vincristine/Cyclophosphamide cycle, and it's been hit or miss since I dropped the Adriamycin. After the first one-day cycle I had, I went camping the next day and was relatively fine. I didn't feel perfect, but I was able to hike and wander around with no big problems. The second time I felt pretty crappy for a couple days after. We'll see what this one holds. Sometimes I think if I force myself to do something rather than lie around and feel crappy it might be better. Who knows.

In general, I'm still on track, thanks to the new timing schedule for my neupogen shots, and things are going pretty well. No lumps or bumps or humps or clumps anywhere. The latest scans show nothing in my pelvis, and the little lung nodules persist, indicating that they were probably not metastasis to begin with - a definite good sign. I've had some blood in my urine the past couple cycles, though, so the docs have upped my dose of Mesna, which Serena likes to say in the voice of Edna Mode from the Incredibles: "Mehhh-znah". Mesna acts as a bladder protectant, but apparently it's not been doing its job very well. Protect that bladder! Hopefully I won't have any significant toxicity issues, or I might not be able to finish off the last two cycles. I suppose it wouldn't be the worst thing - at this point in the protocol it's unclear as to whether these last two make a difference or not. Still, the big thing is. . . ONLY TWO MORE!!!

Psychologically, though, I'm cautiously optimistic. I've certainly had darker days (usually right before I begin a cycle I'm just in a bad mood - It's hard when you feel relatively normal and you know you have to go feel crappy for a couple days), but I think the worst of the uncertainty is yet to come. While you're getting treatment, you know that you're actively doing something. You have a plan, and a set of tasks that you need to accomplish. Once you're done treatment, you just have to wait and see. You go into surveillance mode and try and continue with your life, always wondering if the cancer will rear its ugly head again. I never thought I would be turning 30 with the prospect of this kind of uncertainty in my life. I'm sure it will hit me even harder when the treatment is done.

So, nice, vague question for the day: How do you deal with uncertainty in your life?

Here are some random pics to peruse while you're contemplating:

My cousin Monica had a baby girl in SF on Saturday. My mom and I went to visit on Sunday afternoon.

My mom holding her yet-to-be-named grand-niece.

The newly expanded family: Monica, Jimmy (her husband), baby, and Sophie (their two-year old).

Monica with baby, Mom with Sophie, and me with bald baby-like head.

Okay, now answer the question!!

Contemplating my prostate

(11/11/08)

A friend of mine was recently diagnosed with ovarian cancer and commented to me about how after the biopsy parts of her were now floating around the country for second opinions and what not. I guess I never thought about it, but it's true for me, too. There are chunks of my prostate in New York, Baltimore, San Francisco, and Stanford. Kind of a strange thought, eh?

In other news, the last cycle finished up without too much fanfare, except my last day was on Halloween, so there was a bit of excitement in the ITA with some of the nurses dressed up in costume. Also, my friend Blase showed up for a visit, as you can see in the pictures. He works over in the children's hospital next to Stanford and I'm sure had tons of fun with the kiddies (apparently they turn the hospital into a trick-or-treating extravaganza for a few hours during the day). The adult side was not quite as exciting, but there was a little bit more spirit than usual, so that was nice for the last day of my cycle. Only 3 more to go. . .

If I weren't holed up in the hospital, I would have been Avatar: The Last Airbender, but alas, the timing didn't quite work out. The alternative was to do as my friend PJ suggested and paint three holes on my head and be a bowling ball. In any case, I want more comments on the blog, so here's the question of the day: What were you for Halloween this year?

Look who dropped in!

Me and my puffy face