First Dose (again)

(5/13/09)

Well, it turns out that Dr. J and I were thinking along similar lines. The tradeoffs were these:

- Do chemo first and risk the tumors growing and becoming too unwieldy for radiation to handle

- Do radiation to the lungs first and risk having disease pop up somewhere else in the body

Solution: do both at the same time!

But of course, so simple! So that's the plan right now, to wipe out the disease in the lungs and clear it out everywhere else, too, at the same time. We'll probably switch up the chemo drugs after radiation is done, too, so we can keep the cancer from becoming resistant. 

It sucks of course, but so far this treatment is looking a lot easier to handle. I have daily cytoxan by mouth for 28 days, and on days 1, 8, and 15, I get a 10-minute push (injection) of navelbine (vinorelbine). Hopefully aside from losing my hair, I won't have too many side effects. Starting Friday I'll go in for radiation therapy every day for 15-20 minutes for 10 days. The radiation will target both of my whole lungs with a larger dose going to the two nodules. 

Getting on a path to solving the problem always makes one feel better, although at this point I'm starting to get good at dealing with uncertainty. . . 

As a parting note for this post, I have to give a shout out to one of my personal heroes, Steve, who is battling Ewing's Sarcoma and just came out of a really rough couple of weeks. He and his wife Ann are such a strong, upbeat couple, and their positive strength is incredibly infectious. Steve, you're a freakin' champion!! Ann, you're incredible, too! 

Frak!!!

NYC, consultations, and more lumps

(5/7/09)

I was in New York last week to consult with a pediatric oncologist at Memorial Sloan-Kettering about my situation. I arrived on Saturday night and spent a couple days hanging out with friends and catching up. That part was fantastic. Sarah came down from New Haven, and Amina came up from DC. Anthony and Lisa (NYers) were there, too, and we hung out chatting at Amina's brother Asheq's apartment, then went out for some late night Korean fried chicken (very tasty). The next day Anthony, Sarah, Manasi, and I had a nice brunch downtown and spent the afternoon lounging and tossing the frisbee (ahem - "disc", that is) in Central Park. Anthony's friend Dave joined us later and we had an impromptu progressive dinner consisting of pearl milk tea from St. Alps Teahouse, tasty pork buns and cornmeal/chocolate-marshmallow cookies from a place called Milk, pommes frites with tasty sauces from another place (I think it's aptly called "Pommes Frites"), and gelato at the Whole Foods gelato stand. On Monday I had a nice lunch with my friend Stephanie, who's about to get married and move to Atlanta (Hotlanta!), and went climbing with Anthony and Randy. Wednesday I got to meet up with Holly and Anthony again, and stopped by Jessica's office to say hi. So that was all good stuff. 

Not so good stuff - The doctor in NY was very blunt about my situation. He painted a grim picture for my chances but did suggest a combination of whole-lung radiation therapy along with low-dose maintenance chemotherapy as a possible way to stave off further recurrence. Still the numbers weren't good. It was a bit of a shock. My mom and I were unprepared for him to be so negative about the fact that I had had a recurrence. There's always the chance of pulling through and being in that minority statistic. In any case, his recommendation was that I have a CT scan of my chest, and if that was clear, to proceed with this preventative therapy measure. 

So when I came back to CA, I had a CT scan of my chest. The scan was last Friday (May 1st). Then on Wednesday, this happened. . . 

(5/6/09) Short Story - Doctor's Appointment back in CA

Waiting again. My mom, my sister, and I were in the small examination room when a knock came at the door. "Hello?" I said. A doctor I hadn't seen before backed himself through the curtain while carrying a small open laptop computer and some papers. He was about my height, dark-skinned, probably of South Asian descent. He introduced himself as an oncology fellow working with my doctor. We had taken up the chairs in the room, so he perched himself on the edge of examination table and balanced the laptop on his knees. "How are you doing?" he asked.  "Any new pains?" Going through the motions again. "Any new lumps or bumps? Any problems urinating?" He was typing in my responses as I gave them. There was something unnerving about the laptop, the back of a screen like a little barrier between us. "Why don't you come sit on the table so I can examine you, and then I'll tell you about the CT scan results from Friday." He was stalling. I sat up on the table and he went through his exam. Shining light into my eyes, thumping on my back, feeling for lymph nodes under my arms. Was he being more thorough for a reason? Stethescope on my back. "Deep breath." Inhale, exhale. Move stethescope. Inhale, exhale. . . He finished and sat down on the stool where I was sitting before. "So, the scan results came back and there's a new nodule in your left lung." Shit.

Actually, there are two. . . 

One nodule is 2 cm (WTF? 2 cm in 2 months???), and the other is 7mm. We're still sorting out the treatment steps, but it looks like it will be some combination of radiation (to the lungs) and chemotherapy. The NY doc suggested chemo first, but if that doesn't work, the tumors may have grown too big for radiation to handle them effectively. If we do radiation first, there maybe metastatic disease elsewhere in my body that will have a chance to grow and do some badness. My vote is to try and do both at the same time - radiation and some low-dose chemotherapy, maybe followed by some harder chemotherapy. 

Actually, scratch that. My vote is for this f@#king cancer to get the f@#k out of my body!!!

Hawaii, India Pics

Happy Earth Day Eve!

(4/21/09)

Short post today - just wanted to put in a link to Hawaii Pictures, which my friend Anthony graciously put together. Given that Anthony did not come with me to India, however, I've had to spend a bunch of time putting those pictures up myself. Hope the result is enjoyable. . . 

I'm off to NY on Saturday for a few days, but will be back on Wed. 

Random thoughts: I was thinking the other day that I've lost a bit of creativity in my life, and I don't know exactly how to get it back. One thing I miss is creative writing. I was thinking that I might start doing a "one paragraph short story", inspired by my friend Jeff's daily minute of music, though I don't think I could do one per day. It might have to be one per week. Honestly I'm not sure I've ever done creative writing outside of classes, but why not start now? We'll see. 

Anyone want to work on this with me or make a contribution? Got other ideas for injecting creativity into life? 

Ceviche, kalua pig, and garam masala

Travels, travels, travels!
(04/02/09)

Hi all! It's been a while since I posted anything here, so I thought I'd drop a line to catch everyone up on what's been going on. It's been a couple months of travel here and there, interspersed with some health scares. I was in Mexico for a bit, then back home, then in Hawaii, back home for a few days, and I just got back from India today. Whew!

A week after my defense (Feb. 20) I went to Mexico for a few days with some buddies from high school (Lisa, Anthony, Charles, Sarah, and Janet). We rented a house in Playa del Carmen and had a relaxing time: did a little sight-seeing, a little beach-laying, and a little snorkeling/scuba diving. Prior to going on the trip, I had an appointment with my thoracic surgeon, who gave me the okay to "do anything I wanted." In my tame mind, that amounted to being able to go swimming, which I thought was a pretty big coup. Anthony and Charles cooked up a storm and kept us very well fed, thanks to Sarah's forethought in bringing a plethora of baggies filled with various spices.

My contribution for the weekend was Bananagrams, a game that amounts to speed-Scrabble without the Scrabble board. You basically start with a bunch of Scrabble tiles, and you form words in Scrabble-style as quickly as you can. When you use up your letters, you say "take two" and everyone takes two more tiles. This goes on until all the tiles are used up and someone has formed words out of all of his or her tiles. Its only link to bananas is that it comes in a banana-shaped pouch (actually, the rules above were ones we made up - the actual rules are a little more complex and involve using banana-related words like "peel" and "split"). In any case, it turned out to be quite the addictive activity and consumed much of our down-time. Anthony posted pics on his Picasa page here.

Can you tell we're in Mexico?

Now can you tell?

Paranoia
So, I came back from Mexico feeling pretty relaxed, though my surgery site was still healing and was still a bit sore. Nevertheless, I decided to see if I could go climbing again. I took it easy the first time and just did very low-effort stuff. The next time I felt better, so I stepped things up a bit, but I noticed that my left groin area was feeling a little sore. I couldn't tell if there was any weird swelling there or not, but I wasn't sure if it was from climbing or something else. It was starting to freak me out a bit, to the point where I kept trying to feel for lumps there. I was scheduled for a CT scan that Monday (Mar. 2) of my chest, abdomen, and pelvis, but I wasn't going to see the doctor until the following Monday. I decided that I wanted to get this thing checked out, so I scheduled an appointment for Wednesday. Luckily, it turned out to be nothing that anyone could feel. My guess is I just strained the muscle a little.

More Paranoia
The follow-up scan turned out to be clear - the pelvis area is clear, the other nodule in the left side is no longer there (actually just barely visible, but it hasn't changed, which is the good part). The right nodules are holding steady at miniscule and minisculer. The pathology from the nodule they removed was no good - same malignancy as before - but they were able to remove the whole thing with good margins. Right now we're in a bit of a holding pattern as we wait to see what happens (or better yet, what doesn't happen). I'm trying to set up an appointment with a doctor in NY to see what other treatment options I might have, but right now treating it without knowing what's there doesn't make a whole lot of sense.

I was feeling great about the clear scans, but then I guess someone somewhere decided a break was not entirely in order. The following Sunday I noticed another lump, this time in the right groin area. The weird thing is that it seemed like it would go away when I lay down to sleep at night. It didn't quite feel like the previous lumps I've had, but I was nevertheless freaked out. I went back to my doctor that week and we determined that it was probably a hernia - normally, this would be a huge drag and annoyance, but at this point, anything that's not cancer is a huge relief. We scheduled an ultrasound for later that day, just to get it checked out and make sure. The radiologist confirmed that it was probably just a mild hernia and I should "just ignore it." Right. Anyway, it's not too bothersome, and I was able to go on my next trip to Hawaii (Mar. 12-17) with no problems. Lots of swimming, snorkeling, hiking, and an attempt at surfing. More on this in the next post. . .

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. . .