Ma' Brain

(6/26/09)

Well, according to the MRI I had yesterday, my brain is completely normal, aside from a couple of loose screws near the amygdala. Heh, what a funny word. Amygdala.

Today I'm listening to Michael Jackson. I saw a guy wearing a single white glove when I came into my building today, and I was wondering if that was a tribute or if the guy just had bad eczema or something.

On a completely different note, here's your pic of the post (I decided I will try to have at least one picture per post - I don' t have that many pics on this computer, so I dug up this one):

This is a picture of a picture from high school, when a bunch of us went up to Niagara Falls on our way to our friend's family cabin in Canada. I told my friends to put their hands on the railing so I could take a picture. Later, when I was taking a black and white photography class, I took the picture and put it on the railing in my dorm, with my hand added on. A little cheesy, but I thought the image came out nicely.

Woozy Woo

(6/25/09)

Well, it seems hydration is not the total solution after all. I've been feeling pretty woozy and light-headed the past couple of days - it got worse after my treatment on Monday. This is actually a good thing, as I believe it's a side effect of the Navelbine, though not a common one it seems. Just to be sure, I'm going to have a brain MRI tomorrow (actually later today, as it's quite late). Sometimes the light-headedness comes from standing too quickly, but sometimes it just seems to be there when I'm sitting and walking around. It definitely makes it hard to concentrate and get stuff done, or even just do not-so-productive things. Urgh.

Usually, I am not so acutely aware of how my body has revolted against me - I can just go about my daily business for the most part - but this has been driving me a little nuts. If it is a side effect, I'm not sure what the solution is, other than to grin and bear it - and hope that it goes away or I get used to it. It's possible that it's due to vasodilation caused by the chemo, where the blood vessels (esp. in the legs) don't constrict when they're supposed to (e.g. when you stand up), in which case wearing compression socks is supposed to help. I tried this out yesterday, but to little avail. My doc wants me to give it more of a chance. I guess I'll try again tomorrow. Nothing like stylin' in over-the-calf black socks.

And now. . . some pics for the day:

My friend Alexis, her daughter Maya, and husband Najib go to the local organic farm to pick up fresh produce every Saturday outside of Boston. Two Saturdays ago (6/13/09), I got to go with them.

You get to pick a certain number of vegetables from the stand per membership.

After picking up stuff from the stand, we went to the field to pick some sugar snap peas, of which Maya became immediate keeper and distributor once we got in the car.

Just don't get the number wrong when you request how many peas you want. "You can have 5, 10, or 12 peas. How many do you want?" "I guess I'll have 5." Looks at you with a slight frown. "Are you sure you want 5. . . ?" She doesn't flat out say your choice was wrong, but it's definitely in the subtext.

Hydration Nation

(6/17/09)

A Starry Aside

You know, some days I feel like I should be an actor. I mean, the landscape of Asian-American male actors is pretty grim. It's either kung fu action stars (Jackie Chan, Jet Li), good actors who have been forced to become kung fu action stars (Chow Yun Fat), or, well, Harold. Is Harold (John Cho) really all we've got? He's the only guy they could get to play Sulu? Dude's not even Japanese (I know, we all look alike anyway).

On to more important things

Things have been going fairly well lately, though there are always new fun challenges to face. I started my new treatment about a month ago, and so far it's mostly been easier. I'm taking Cytoxan by mouth every day and then getting Vinorelbine (Navelbine) once a week. My time in the hospital is nominally much shorter, and the side effects haven't been too bad. The main issue seems to be staying well hydrated.

When I got my first treatment (May 13), I felt fine afterwards, and I decided I could handle going to Yosemite with some friends (hmm. . . i should post pictures of that). On the trip we did a short hike, during which I came close to passing out after feeling really light-headed on the way up. Later on I started feeling weird heart palpitations, so I went in to see a cardiologist. He thought the most likely explanation was dehydration. After ruling out anything more serious with a cardiac ultrasound, some bloodwork, and a Holter monitor (it's an EKG logging device that you wear for 24 hours to see if you have any weird arrythmias), it seemed that hydration was the key thing. It took a few days of drinking a lot of fluids to get back to feeling normal again. The palpitations also went away, so that seemed to work.

The other weird thing was that I kept feeling this burning sensation in my throat/esophagus. I suspected radiation but my radiation oncologist seemed baffled that I would be affected by the radiation in this way. My cardiologist suspected acid reflux, so he gave me something for that, which actually seems to have helped. So these issues mostly resolved after a bit. . .

Then last week I went to Boston to see some friends and attend an appropriate technology workshop run by Amy Smith (from MIT) at her family's home in Maine (hmm. . . I should post pictures of that). I started feeling light-headed again toward the end of the trip, despite drinking tons while I was there. Since I've been back it seems to be just as bad, despite my drinking lots. I got a blood pressure monitor to use at home, and my BP is running pretty low, even for me (mine is usually fairly low).

Prior to going to Boston I was working pretty hard on our final project (the India project), which ended up pretty nicely (hmm. . . I should post pictures of that, too). Point being, some combination of lack of sleep and dehydration might be at play here. In any case, I'm in the ITA right now getting some fluids. They drew some blood, too, so maybe that'll show something enlightening about my condition. Apparently this is a common thing, so hopefully it's nothing serious.

More info soon. . .

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. . .