The G-nut Spot

URNbelievable....

2011-03-16T20:53:00.000-07:00

It's truly unbelievable how many different types of urns there are. Stone, wood, ceramic, glass, metal, mixed, tall, short, round, square, solid and secure to completely biodegradable, elegant to funny, classic to bizarre. To my friends living… you may want to start looking now!

It’s been almost a year now since Alex’s passing. I’m expecting a call any day now to let me know that his remains are ready to be picked up. At that time his sister, Julia, and I will go and collect Alex’s cremated remains. For the last year his body was used for scientific purposes – in hopes of furthering science and improving the lives of others. But now… a year later… what container is there that could capture the essence, the joy, the drive, the heart of Alex?

My only other loved one who was cremated was my grandfather, but picking an urn for him was easy. Having been late to his own wedding because he was in the car listening to the Yankee’s game, his remains were put into a new York Yankees themed urn – complete with baseball. But he had lived a full life and that was a story that was retold every anniversary, baseball game and frankly whenever we needed to put him in his place. Alex’s life though was … incomplete.

We each have a memory of a defining moment with Alex. For me – him being in my rock climbing class and more so when I got him back on the wall for the first time after a round of treatments… for Janet it was probably a much earlier memory of first meeting him in high school… for Serena probably their first kiss... and for his mom and sister – so many possible key moments to choose from to capture him in forever.

A tear drop? An orb? A fire hydrant? A box? A bag? A memory? An emotion? What form do you put on the remainder of a person when all that is left is ash?

Frankly… I say none. Alex isn’t in the ashes; Alex is in my heart and memories. Even if I were to take the fragments of DNA available and reconstruct a person from it, that person wouldn’t be Alex. Though he may look like Alex, his memories and experience would be completely different. Maybe he’d become a musician instead… or an artist… or maybe an electrical engineer at Stanford, but even then he still wouldn’t be Alex. The Alex I knew lives on in my heart and mind – not in ashes. As such… since he’s still alive to me – I can talk with him whenever I need and go to his memorial spot to find some solace. Granted… that still doesn’t help with deciding what urn to pick out for him. It does, though, help me to focus on the important facts – that Alex’s spirit could never be contained by an earthly vessel and that it lives on. We have his ashes, we hold on to memories and we move forward knowing he’s looking out for us. Someday we’ll meet up again. Until then – we live.

Happy Birthday Alex

2010-12-24T04:42:00.000-08:00

If things were right with the world...Alex would have turned 32 today.

He would have celebrated with his mother, sister and Dennis. They would have enjoyed a dinner of duck, he would have opened a gift or two and then they would have watched a movie before heading to bed on Christmas Eve.

If things were right with the world... Over the summer we would have gone climbing and hopefully brought Serena, Janet and maybe even Alan along as well. Alex would have scrambled up something and I would have yelled at him to do it faster, more graceful or something ("Use your legs!) no matter how well he did it. At least I'd yell with a smile and we'd still go out to eat afterwards.

If things were right with the world Janet, Serena, Alan and crew would have gotten him out skiing. The snow is amazing this year. He would have loved it.

Sadly I'm not the judge of what is right and what isn't. Unfortunately cancer... abnormal cellular growth... does happen. Though so small it can spread and grow and ruin a beautiful life.

All that we can do is hold on to the love that he had for each of us. Remember his words of comfort, his strength of character and his sidelong looks at us when we did something that he didn't quite agree with but tolerated. He's no longer here, but we are here for each other. Though distance may separate us, and some of us will never meet, we share a common bond in having a great friend named Alex Tung. Someone ... who in his quiet way did what he could to make things right in the world.

Keep up the good works for all your neighbors, all over the world, this holiday season and throughout the new year if for no other reason than that Alex would have wanted you to.

Happy Birthday Alex, and Happy Holidays to all.

Alex Tung Lab Room Dedication Ceremony

2010-05-29T23:22:00.000-07:00

Recently there was a dedication ceremony for the Alex Tung Laboratory for Assistive Technology and Experimental Mechanics (Building 550 Room 134) at Stanford. It was a very nice ceremony with a good attendance of friends - whether faculty, fellow students or other.

Below are video clips of the speeches. Thank you to everyone who helped make this happen and a special thank you to Micah for organizing the event.

Opening speech by Brad Osgood, Professor of Electrical Engineering & Senior Associate Dean for Student

Speech by Bob Dutton, Professor, Electrical Engineering at Stanford.

David Jaffe - Associate Director, Assistive Technology Laboratory at Stanford (ATLAS)

Julian Gorodsky - d.shrink, Hasso Plattner Institute of Design

Sheri Sheppard - Professor, Mechanical Engineering

Ed Carrye - Consulting Professor, Mechanical Engineering

Carlotte Jacobs, MD - Alex's physician.

Greg Brown, Director of Education and Membership at Resource Area For Teaching (RAFT)

Leonard Ortolano - UPS Foundation Professor of Civil Engineering in Urban and Regional Planning, Former Faculty Director of the Haas Center for Public Service.

Closing remarks by Brad Osgood

A quick look at the room which will become the lab. Right now it's being used more for storage.

Good Grief, Grieving SUCKS!!

2010-04-08T17:22:00.000-07:00

It's been 2 months now since Alex's passing. We've cleaned out his room, packed away clothes and remembrances his mom wants to keep, friends have also taken various items -some practical (e.g. clothes, sleeping bag, etc) and some not so practical (a bendy smile face guy). Just whatever we felt we could honor, or remember, Alex by holding on to.

I've compiled all of his external hard drives (3), laptop and desktops (2) ... boiling it down to less than 1TB of data... mostly pictures and music. Along the way I've read some very touching stories he wrote, a whole lotta school stuff and the various random assortment of just random bits and bytes.

Slowly I'm getting back to doing the things I enjoy (I actually wrote most this post from Yosemite). So today I'm going to write about my grieving experience over the loss of my bud, Alex.

Everyone is unique. Everyone grieves differently and differently for each relationship lost. How I grieved when my Italian grandma died from the cancer that was noticed years earlier and never treated until it was too late was very different from how I "grieved" over my Czech grandfather who finally passed away in October after being on death's door for some 6+ years. Neither of those deaths had the sudden impact, nor the same grief I felt at the loss of Mark, an extended family member and friend in 9-11 who I was suppose to visit that summer, but pushed out the trip to the upcoming Christmas break due to work.

Yes, there are general phases that folks can go through. You can DABDA me all you want - but remember those are just general, and fluid, phases. Grieving isn't some step-by-step process, it's a day-by-day, moment-by-moment one. Folks don't go through it like Lowell on Wing's: http://www.youtube.com/watch?v=X7kxKQkfY0M (time frame: 5:07-5:55)... but it sure would make thing easier.

This is just how I'm grieving... how I'm feeling... what I'm experiencing... over the loss of my buddy, Alex.

Losing someone sucks. As an extroverted-introvert I'd love to have 1:1 time with everyone. Fortunately over the last few years I had a lot of 1:1 time with Alex.

"But he's just a friend?!"
Yeah - I've heard that from folks by their words and actions. "Just cheer up!" has been another common one. Those comments are seen in the opposite extreme from folks who just look confused/hurt around me and do the stutter speech and quickly retreat.

And, of course, my grief just isn't for my loss of Alex, but also those I know who cared about him greatly. Time and time again I use to watch as his mom did the same thing I saw my mom use to do when my sister was going through chemo. She'd come into the room with a tray of food and a smile on her face and try to make some joke or smart aleck comments which just usually was responded to with eye-rolling and a groan. She'd sit and encourage her beloved child to eat "Come on, just take one more bite" and when finally finished she'd pick up the tray which still contained most of the food it entered the room with, walk out of the room and in to the kitchen and by the time she put the tray down on the counter the tears streaked her face.

I saw this time and time again, until the tears ran dry and just a sullen look remained. The only grace I could offer was a hug - a hug to let her know that though I'd never know her pain, I do recognize that she is in pain and loved.

It's a Toothbrush!
While going through the boxes of items which were his, I found a toothbrush with his climbing and camping gear. Climbers use them to brush off holds, this one could have been used for the same purpose.

I-see-him-staggering-in-to-climbing-class-at-7:30am-and-walking-out-tired-and-sweaty-Giving-a-belay-at-Phantom-Spires-with-a-big-smile-on-his-face-Laughing-Sitting-on-the-couch-reading-Helping-me-with-a-research-paper-Laying-in-the-hospital-bed-With-hair-Without-hair-Chemo-drip-drip-dripping-Grimacing-as-pain-shoot-through-his-side-Looking-at-me-with-wide-concerned-eye-Hugging-a-frail-body-Laying-on-the-couch-with-oxygen-tubes-in-his-nose-Laying-in-bed-fitfully-moving-on-his-last-night-WHY-DIDN’T-I-STAY?-He-only-had-hours-to-live-Didn’t-I-have-time-to-stay-just-a-little-longer?-I-knew-he-was-slipping-away-but-why-did-I-go?-SHIT!-The-gurney-clangs-and-the-chime-sound-as-they-take-his-body-away-Flurry-of-service-preparations-Mourning-put-on-hold-Constant-activity-Staying-Busy---Pause---The-beach-The-picture-of-him-The-service.-He’s-gone-He’s-in-my-heart-He’s-gone-he’s-gone.

I drop it.
I stare at it.
I slowly reach down and pick it up again. I examine the worn and splayed toothbrush that belonged to a friend of mine... and I toss it out. It's only a toothbrush.

There are still moments when it really gets to me that he's gone. And even though I may "accept" it, it doesn't make it suck any less. I miss my bud.

It is good to know I'm not alone. As Janet put it after editing this post:
"2 months later...life has almost returned to normal, which, not too long ago, seemed unimaginable. of course, it's a new version of normal, and i'm certainly still very fragile emotionally, but at least i don't feel like my world is about to fall apart all the time. it still hits me every once in a while, and i'm momentarily stunned by the reality of it, but it doesn't entirely overwhelm me like it used to. guh, but i do miss him. a heart-wrenching, insides-twisting-up feeling of loss. i wonder if that'll ever go away."

Yeah... grieving sucks.

Doesn't just suck for the bereaved either...
Not knowing what to do though also sucks. I had a lot of friends say they didn't know what to do or say. In response, I put together the below things that will hopefully help. Again though - this is just from my perspective of this loss.

"I'm sorry"
Just saying "I'm sorry" means and helps so much. Don't try to search for "the right thing to say" just keep it simple and say "I'm sorry"

Understand the relationship
Ask "How did you know ____

", "When did you last see him/her", "What did s/he mean to you" That way you'll get an understanding of the level of a relationship the person had and the level of loss now felt.

Be there, not just "available".
A person grieving doesn't (usually) want to depress others - so s/he will withdraw. So don't say "Call me if you need anything" but "what can I do to help?" Don't say "Call me if you want to grab a bite" but "Let's go get something to eat/drink." In the immediate aftermath of the events the bereaved doesn't think clearly and proper eating, sleeping and exercise habits are gone. In the immediate future - food is generally the most important, so work on that.

Laughter, isn't always, the best medicine
Don't try to cheer your friend up, just hang out and be with him/her. Be supportive, understanding, and above all - patient. Phrases like "Just cheer up!", "I hope you're feeling better!" and "C'mon- smile!" just hurt. They trivialize the situation. Yes - all meant with best intentions I'm sure - but it's like having an arm ripped off and someone saying "Here's a little band aid for you!" and expecting it to be all better.

Nudge
Don't force/drag your friend out, but just nudge 'em along. "Hey - lets go grab some coffee" and later "How about dinner with some other folks". It's much easier to hang out with people who are like-minded... who have suffered the similar loss... but it's also necessary to get back to living and hanging with others who may not have felt the loss.

Love on & Allow time (aka Be Patient)
In all you do, in all you say - just love on your friend as much as possible. Even if you're confused - just be there; if you don't know what to say - just hug; if you don't know what to do - just sit down and hang out. Life does go on, but for the bereaved it just slows down to a crawl. So try to match the pace for a little while and just take it slow.

These are the things I found most helpful - so hopefully they'll help you. Please feel free to add on your suggestions as well.

Alex Tung's Memorial Service

2010-04-07T16:44:00.000-07:00

Updated 5/23/2010 with David's speech.
--------------------
As I said before, the day was beautiful. The sun was shining through lightly cloudy skies, the usual strong coastal wind was a comfortable breeze, and the roaring ocean was only a murmur.

Alex loved being outside in nature and we were able to find a great location in Half Moon Bay. The first day we saw it, the weather was stormy and gray, but the next time it was bright sunshine and hot. We just had to hope that the weather would be okay on Sunday.

A view of the bluff where the service was held, taken from an adjacent bluff.

People had already started gathering on the ocean bluff point by 10:30am last Sunday.

A picture of Alex was set up so that the people would look at him and the speaker with the backdrop of the Pacific Ocean.

People continued to gather, laid down their blankets, and consoled each other as best they could.

Friends continued to stream in and sign the guest book and tried to provide words of comfort to Alex’s grieving mother and sister.

Shortly after 11:00 over 200 friends and family members, some of them from far away - East coast, Europe, Hawaii, Taiwan, New Mexico, etc. were asked to take their seats for the service to begin. We knew that many more people were unable to be with us in person, but attended in spirit.

Before continuing on, please start the music playlist below. The songs are the three selections sung and played by friends of Alex during the service.

Angel was the first to speak and officiated the memorial service. After him, family and friends who covered Alex’s entire life came up to speak. The text of their speech is included below, but I have left out all of the breaks for tears and trembling voices. Each speaker spoke from their heart, and told of his or her love for Alex. He touched so many lives and is deeply missed.

The following is the speech by Angel, Alex’s undergraduate advisor.

“Dear Family and friends of Alex:

Today is a truly unique day in our lives. All of our paths cross together at this place and time. The spirit, the memory, and the life of Alex brings us all together, his body having already followed his will that it be donated for research to benefit others. We come here with sadness in our hearts, we come with a higher appreciation of life itself, we come with the joy of times past, and with the regrets of opportunities missed. Some of us, who were older than him and who ignored the futility of making life plans may even come here with a little bit of anger; anger at life itself because with Alex, life did not respect the natural order of things. The order that dictates that a mother leaves before her son does, that a professor departs before his student, and that friends and lovers shall march away together.

I first met Alex on September 18, 1996….at 4pm….I was appointed as his faculty freshman advisor at Stanford. In a million years, no one would have picked us to become friends. He was a 17-year old kid with shoulder-length hair; dyed blond for good measure. Intellectual, but pretending to be cool, rejecting pomp and circumstance, and deeply wanting to change the world. I, on the other hand, was twice his age and the type of person who thinks that a shirt and tie are casual clothing. But friends we did become, and thus we were, since that initial meeting until we said goodbye, for four thousand nine hundred and thirty five days. And what I received from Alex in all those days was nothing but affection, smiles, understanding, an open heart and mind, and a love and friendship that grew at least a little bit every single day. I cherish all those times, and for most of those days, I went to bed giving thanks for the great gift that I had been given in Alex.

Each of us wonders what we have achieved in life. For one, we want to love and be loved in return. For two, we want to learn to be virtuous and live life in peace. If those are the measures, then Alex overachieved all his life. Even though I meet many of you here today for the first time, I know nevertheless most of you already through Alex. He would tell me how much he loved his high school friends, how he cherished his family, how he felt a lifetime bond with his freshman dorm mates, and how deeply in love he was with his girlfriend. Wherever he went and whoever he met he gave love and found love. And then, as a professor, I learned much from this student about the virtues of man. I saw humility, I saw kindness, I saw charity, and I saw fortitude in his words and his deeds. He travelled far seeking a measure of justice for the poor, and he worked near to promote the human side of doing business: A young life indeed, but with a century’s worth of heavenly gold.

And thus, we will now seek to keep the light of Alex glowing in our lives and in the lives of others. We can do so in our everyday actions by learning from his virtues and by remembering his love. His life is in each and every one of you; it has not departed and sad will be the day if you ever let it leave.

I brought my young son with me today. He is too young to understand this moment. But I wanted above all that his life path would also cross with all of ours in this place and time. Whereas for us this intersection is a destination, for him it can instead be a departure. The day will come for him when he will have to choose between right and wrong, between love and hate, and between virtue and sin. When that time comes, he will not have to search in books for answers, he will not have to stare at a poster or fall for a false prophet. Instead, I’ll be able to come to him and say: “Son, search no more for a virtuous man, you have already met such a man, let me tell you all about Alex”.

Thank you all

God Bless you Alex”

** ** **

Next to speak was Alex’s cousin, Monica

“I am so grateful to see and have seen all the support and friendships that Alex had throughout his life and present today. My name is Monica and I’m Alex’s cousin.

Even though we’ve lived far from each other most of our lives, I have many fond memories of my cousin Alex. My childhood memories of him include hot afternoons at the swimming pool, and running around with our lanterns in during moon festivals. But it was not until recent years, into our adulthood, where I’ve gotten to know Alex as the supportive, generous, and playful person that he was.

Alex has been a supporter and a true family member to me. It meant a great deal to me when he showed up at all of my recent big life events, getting married, having children, bringing us his cheerfulness and sharing our joys. I had a canopy that was collapsing at my wedding ceremony, he was the first to rush to save it. He and Serena were also the ones to take me on my first outdoor stroll after my first baby.

In always a gentle manner, Alex told you the truth on his mind, and supported you in the best and appropriate way that he knew how. He also had a sarcastic edge to him. I am not to admit “losing” any heated discussions, but I did take a few well-thought-out jabs from him.

Our family is so proud of Alex, both of his professional and personal achievements, and even more so of the incredible man that he was. All of us here knew that he was brilliant at what he did and generous with his time with Cosmos Education, his friends and families. I am heartbroken that he’s left us, but cherish the memories that I have of him. I love you Alex.”

** ** **

Janet, a friend of Alex’s since high school, spoke next.

“I first met Alex in the ninth grade back at Conestoga High School in Berwyn, Pennsylvania. I remember walking into science class on the first day of school, where he flashed me a smile, and I instantly developed a huge crush on him. While that never quite panned out, it was the beginning of an amazing friendship. Throughout the years of high school, our circle grew to include a small squadron of friends. One of the things that made us unique was our inability to make decisions. We could never decide where to go or what to do, but in the end, we realized that it really didn’t matter. All we wanted was to simply be together.

And we truly always were together. Every free moment we had, we’d be swimming at Alex’s, or shooting pool at Tom’s, or playing video games at Andrew’s. We were this group of – not just friends, but best friends – that insisted on doing everything together, even when it was actually just doing nothing.

I always felt that Alex was the moral backbone of the group, which extended and matured well past high school. He grew to become a man of such integrity and compassion, and was the most honest and genuine guy that I’d ever known. I could always count on him to tell me what he truly thought, and nothing ever got past his watchful eye. I’ll miss having that voice of reason keeping me in check.

Alex loved meeting new people, trying new things, and exploring new places. It was invigorating for him, and through these new experiences, he became much more than an engineer - he was a musician, a photographer, a poet, a humanitarian, an outdoorsman, and so much more. He was never afraid to launch himself full force into something he was passionate about. As a result, he was able to touch the lives of so many people, many of whom I see here today.

Alex always expected the best out of all of us, and so we always strived to do our best and to achieve our full potential. I’m a better person because he was in my life, and I’ll continue to live it as he would have wanted me to. Alex, we love you and we miss you.”

** ** **

After Janet, there was a musical interlude as two of Alex’s friends – Jeff and Tom – through tears and throat clenched pauses, played and sang heart-touching renditions of Israel Kamakawiwo'ole’s “Over the Rainbow”, REM’s “Night Swimming” (one of Alex’s favorite bands), and Rusted Root’s “Send Me on My Way” (the informal theme song among his group of high school friends).

** ** **

Then Mike, Alex’s friend since freshman year of college, spoke.

“Alex and I met because we lived in the same dorm our freshman year in college. From the moment I saw him I knew there was something special about him. We were both in engineering, had the same freshman adviser, and had the same girly hair. Little did I know it would take most of our undergraduate years for people to figure out who was Alex and who was me. Alex was such an amazing and unique person that I can't believe that anyone would actually think I was him.

Early in that first year at Stanford, Holly Thomas decided she didn't really like her own room and started looking around for places to study and hang out. She tried using my room, among others, as a second home and didn't always find a hospitable environment. She ended up spending most of her time in Alex and Michael Vortmann's room, essentially living under Michael's bed. Alex never said a word, and welcomed Holly into the room, letting her come and go as she pleased. When he knew she was feeling down or having a bad day, Alex would surprise her with her favorite food - macaroni and cheese. Holly became so comfortable that she started answering their phone and chatting with Alex's friends, mostly Amina, who today is as much of a friend to us as Alex was.

Alex's concern for others was not isolated to this one person or time. He was always doing things to surprise other people that no one else would think of, and he brought us all so much joy. For instance, after Michael graduated from medical school, Alex sent him a box full of photos from our time in college together, and made him a poster with pictures of the most special moments. He put a quote on the poster by Zora Neale Hurston that read, "There are years that ask questions. And years that answer." When we were sophomores, Alex snuck into Xanadu dorm where Jessica, Holly, Neiha, and Kerry were living, really early one morning. When Jessica woke up, she found that the dorm had been decorated with a giant poster reading 'Happy Birthday Jess!" And after undergraduate graduation, on his European backpacking trip with Jannon, he was always coming up with ways for the two to make the most of every city.

Alex spoke about wanting to make the world better, but he backed up those ideas with his work. He was so great at combining his love for science and engineering with his love of public service. He helped people through education and outreach on both on a local and international scale. He championed and worked countless hours for organizations including Cosmos Education, Stanford Anthology for Youth, the Haas Center, the Office of Engineering and Public Service, and the Science Bus, among others.

Alex had an exceptionally open and welcome spirit. So many people I know have reflected about special conversations that they had with Alex, or how they enjoyed just being around him, or even just how they had a crush on him. That was the effect that Alex had on people. Alex not only surrounded himself with these wonderful people, but connected them to each other too. Throughout college, Alex told us so many great stories about his friends from Pennsylvania that when he got around to introducing his weird college friends to his weird high school friends, it was as if we had known each other for years. Because Alex surrounded himselfwith such great people, it's no surprise that those friends became our friends, and that they are now among the people we talk to and lean on every day. I am so thankful that Alex brought us together.

Alex's strength is amazing. Whenever we would visit, he managed a smile and perked up, even when he wasn't feeling great. More often than not, I felt like he was the one lending support to me instead of the other way around. He never stopped living and learning. This last summer, we took a trip to Lake Shasta to spend a weekend on a houseboat, and Alex did it all. Alex rushed from a doctor's appointment and traveled for hours to join us. He brought his camera, and spent the weekend capturing a beautiful weekend on the lake. He even found time to learn how to water ski. His smile during that trip was something I will remember forever.

I love that Alex would stick up for the people who need to be defended. I love the memories of all of those summers packing 4 or more people into apartments and making the best of it. I love Alex's cynic and sarcastic wit, and the optimism that lay just beneath. I love that we could always talk, no matter how long it had been, and it would be like no time had passed at all. I love Alex, and I will never ever forget the time that we had together.”

** ** **

David, Alex’s graduate school co-advisor, spoke next.

It is odd that only in times like this that we truly understand and appreciate those around us. In seeing this gathering of friends and family I see the richness of Alex and his life that I did not truly understand until now.

The facet of Alex that I know of Alex was as his PhD dissertation advisor. I first met Alex about 7 years ago shortly after he passed his PhD qualifying exam. He was looking for a project that fit his intellectual interests, but also fit his sense of things that were important. He came very highly recommended by Bob Dutton and Steve Connolly. As any good advisor would do I promptly set him off on directions that led him no where. Fortunately, he learned from this and ultimately formulated a cohesive body of work that lays a foundation for new medical tools to treat patients with less suffering and pain.

Although, Alex proved to be a determined and outstanding scientist and engineer, his heart as many have already related was with service and education. I remember Ale taking the summer to go to Africa with Cosmos. When he returned, he had such enthusiasm from his experience that I was certain that he would never return to the hum drum life in the lab. As is typical of Alex, we went through and analyzed his interests and goals and he realized that the doctorate would give him the credentials he would need to achieve greater impact. He didn’t let his return to research, however interfere with his love of service and teaching. There were many evenings when I would come to the lab at night to find student projects from the Science Bus scattered throughout.

It is sad that Alex life was cut short, but we can find solace in hearing of his deeds and seeing his friends around us. We can know that his life was a full one. In the end we should not judge the value of a life by its duration, but its richness. In this regard Alex’s life has been and will be very valued by all around him.

** ** **

Dana, a friend from Cosmos Education was up next.

“My name is Dana. Alex and I worked together on Cosmos Education, an organization that many others have already mentioned today. Cosmos is a nonprofit that does work to improve science education in Africa. Alex was a true anchor for the organization and he will be missed tremendously.

As I look out on all the wonderful friends and family that have gathered here today in memory of Alex, I can't help but think of all of the people who could not be here. This includes Cosmos colleagues in Kenya, in Zambia, in the UK, and countless secondary school students from across Africa. I know that they are also here in spirit.

While I was reflecting on what to share with all of you today, I thought about the numerous ways in which Alex was special. But what stuck out for me above all else was how thoughtful and reflective Alex was. And how he was always thinking with both his head and his heart.

On the intellectual side, Alex confronted the complexities of development and was always asking smart questions and learning as much as he could. He knew that good intentions alone were not enough and that if he truly wanted to make a difference (which he did) then he needed to understand the complexities. Alex put his knowledge to practice as he strove to increase Cosmos's impact.

On the human side, Alex didn't let the complexities of development keep him from acting. He was the first to respond in times of crisis. When the house of a Zambian colleague burnt down, Alex was the first to rally support. Five days or so after I met Alex for the first time, we were together on a Cosmos trip in Zambia and I found myself in the unfortunate situation of having an ATM card that had expired and knowing I still had two months left to go in Africa. Even though he barely knew me, Alex didn't hesitate to start withdrawing money from his own account for me and bankrolled the rest of my trip to Africa. (Yes, I did pay him back!)

There is a quote posted on one of the walls at the Hewlett Foundation where I work that is purportedly a favorite and William Hewlett which says "never stifle a generous impulse." I think Alex lived by this every day, and in his passing I hope we are all able to follow his example.”

** ** **

Serena, Alex’s friend from graduate school, and recent girlfriend then spoke of Alex’s quirkiness.

“Seeing everyone who came today really shows how much Alex's generosity has touched everyone's life. I don’t think that any words could fully capture his spirit, but I wanted to share a couple of quirks that made Alex truly Alex.

Alex hates chocolate, but will eat oreo cookies

He loves cherry flavoring, including cherry coke and cherry flavored antibiotics.

His sign is a smiley face with tongue sticking out to the right

Alex gives a disapproving face to people who don't recycle or properly dispose of trash; he will carry trash for miles to throw it away properly

Alex is a loveable nerd; I especially appreciate his 3dB wall

He is very huggable since he has a very nice curve to his shoulder

He is a packrat because he really cherishes everything, including all the cards and messages you all have sent him through the years.

... of course there are many more attributes which make him so unique and memorable.

I would like to end with one of Alex's favorite quotes from Ralph Waldo Emerson, which I think really exemplifies him:

To laugh often and much; to win the respect of intelligent people and affection of children; to earn the appreciation of honest critics and endure the betrayal of false friends; to appreciate beauty, to find the best in others; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to know even one life has breathed easier because you lived. This is to have succeeded.”

** ** **

Last on the schedule, having known Alex for the shortest amount of time, was me.

“The first day I met Alex… I yelled at him.

I told him to “climb harder”, “watch your footwork”, “keep going”… he left the Rock Climbing Strength and Conditioning class that I was teaching at Stanford with a smile on his face and sweat on his brow.

I knew I did my job well when he came back the next week for more.

I just loved how he gave it his all – constantly giving his best effort and making such a great impact on the rest of his fellow classmates as well by shouting words of encouragement and pushing, whoever was his partner for the day, to his or her limits.

After the quarter ended we continued to hang out – and I took him out on some group climbing trips – and at some point, somehow, we became good friends … and his climbing did improve too.

Now that I’ve been able to see a much more complete picture of who Alex was, and all the amazing things he did, it’s surprising that he had the time to climb at all.

Alex was involved with so many, and such diverse, groups. From helping middle school students find “their voice” through writing to science education and sustainable living in Africa.

He helped countless people all over the world.

Despite having such a short time, he managed a high impact. In reading the outpouring of responses and emails I’ve received since updating his blog it has absolutely amazed me the positive impact he had on so many lives. Each “Alex experience” that was shared showed his great and caring personality – each had a touching story to tell about how he impacted their lives for the better - pulling out the very best in those around him.

People who got to know Alex were changed for the better.

And I, like you, have the pleasure, and honor, of including myself in that category.

Though he’s no longer here to climb with, laugh with, or make fun of me – he will always be with me in my heart and memories. He helped shape me to be the person I am today.

You never know when will be the last time you say goodbye to a friend – so cherish your friends and follow Alex’s example - and make a positive impact.

I love you buddy.”

** ** **

Afterwards Angel closed out that portion of the service and other individuals, who felt moved to speak, also came up and shared their stories.

First was Alan,

“Hi all, I'm a friend of Alex's post undergrad era. According to gmail, I've known him since at least 7/26/2004. In those 6 years, I'd say Alex was one of my closest friends who also understood me the best. In our discussions among friends, he'd be the only one who grasps where I was coming from and could explain it to others (although he wouldn't necessarily agree with me). Hopefully I'm channeling some of him today.

Looking through our chats and e-mails, I've clearly gotten more out of our friendship than he did. He's given me so much advice on getting my degree, and has provided a good butt kicking at times when I'm procrastinating. Showing me that one person can and should try to impact the world (cosmos, science bus, etc.). A former labmate e-mailed me last night, and she said.. onething she remembered about Alex was that he would bring us Jack In theBox at night when we were working late, even though Alex was not in this class.

What did I bring to him? I got him to watch shows like Glee, America's Best Dance Crew, and So You Think You Can Dance. Quality American television. Believe it or not, he's even telephoned in votes for that show. As usual, we would disagree on who was the strongest dancer.

I do want to tell him he's wrong about one thing. He would occasionally say that he was jealous of the number of friends that I have. I hope he's here today seeing this. I should be the one jealous of him. The number of you, the intensity of everyone's love for him, and, as cliche as it sounds, the fact that we all are better people just for knowing him. I really hope he can see this. I love you Alex, I'll miss you.”

Allen also read a message prepared by Winston Hsieh, an award-winning historian and biographer, who is a cousin of Alex's mother. The message outlined the impressive family line that Alex was born in to.

** ** **

Several other friends then got up to speak..

Finally Alex's sister Julia and mom gave heartfelt thank you's

It was also mentioned again that Alex was awarded his PhD in EE and that approval has been given to name a laboratory room at Stanford in his memory. The lab houses the new Assistive Technology Laboratory at Stanford (ATLAS) in Building 550, Room 134. Angel then dismissed us, and we retired to my research advisor’s nearby house for some food and to view many of Alex’s photos and writings. We also watched a slideshow of his life, with incorporated comments of remembrances, that Serena so thoughtfully put together.

Alex’s high school and college friends also took the time to make poster collages, showing many highlights of Alex’s life. One such poster below:

Some people sat alone with their memories of Alex and slowly went through the albums and notes.

Others gathered in small groups, reaching out to those around them for support as they looked into moments of an amazing life.

And yes, us climbers did take one more climbing photo…

The slideshow was definitely the impressive remembrance.

Feel free to download the slide show pdf. Warning: it is a large file.

It truly was very impressive, and the writings, very touching. Thank you very much to all those who sent something in.

Folks slowly trickled out and went back to their homes as Alex’s mom and sister sat and relaxed. It was a great spot to take a much needed nap.

The next day we did gather together for a dinner… and though it was a full table, it felt empty without Alex... who just a few days earlier had insisted on eating dinner at the table and not in the hospital bed in his room.

We also continued the cleaning, and soon had his old room and office packed up

I am still going through his hard drives - compiling his photos and documents in one place, and am enjoying all the emotion that he put into what he wrote and his amazing photography skills. He truly was an artist.

And yah… now that the service is over, the cleaning done, and only a few more hard drives to go through… soon I’ll have nothing left to do for Alex… soon I’ll just be going through my days again, back to my normal routine.. staying busy with all the stuff I do… while still wearing my “LiveStrong” wristband to honor Alex, and remembering how much I miss my bud.

One Week+ Later

2010-04-04T19:51:00.000-07:00

Hi, this is Julia, Alex’s sister. Those who know me know that I never post anything – I call myself a Facebook lurker, someone who enjoys reading what others are doing, but never thinks that anything they’re doing or thinking is worthy of posting.

So this is very unusual for me, to say the least. But these past few weeks have been both heart-wrenching and heart-warming at the same time, and I feel a little obligated to share some thoughts with you (dear reader).

Alex wasn’t just my brother; he was someone I enjoyed as a friend, someone I would have chosen to spend time with even if he wasn’t related to me. And I’ve been stunned and amazed at the number of people he touched, and the outpouring of support my Mom and I have received.

I mean, Alex has almost 350 friends on Facebook. I’m not sure I even know that many people. That’s the heart-warming part, knowing that Alex had connected with so many.

The heart-wrenching part is, of course, missing him. I’m thankful that his passing was relatively fast, as it was so painful to watch him deteriorate. I am even more thankful that his last day was filled with so many visitors, and that he was able to enjoy the time with them all. It really was one of the best days of that last week. But it’s still hard to accept that he’s gone, that there will never be another goofy moment with him.

The memorial service was a week ago today, his passing a week and a half. Seems like such a short time, and yet also so long ago. My Mom & I went to put some flowers down at the bluff today – it was raining & the wind was driving pretty hard. We tucked the flowers into the cypress log by the grassy area. It was a reminder on how fortunate we were to have the stunning weather at the memorial. At this point, they've probably been scattered by the winds, but that's fine, as Mom had wanted to throw them into the ocean but we were thwarted by the weather.

Regarding the memorial, we have to thank so many people for pulling it all together. I know Mom & I would have been overwhelmed if you hadn’t taken over & just planned everything. I also know that I’ll be missing people who either did things in the background or I just plain forgot – forgive me. But I want to thank these people again, hopefully a little more eloquently than what I said at the memorial.

Thank you, Blase, Alan, Janet, Serena, and Gloria for scouting out locations and doing all of the planning for the service.

Thank you, Serena for pulling together the slide show, with loads of assistance from Alan, Blase, Amina, and everyone else who sorted through the boxes & gigabytes of photos.

Thank you, Amina & Sarah, and I’m sure lots of the other high school folks for putting together the posterboards and helping to sort through Alex’s stuff.

Thank you, Jeff & Tom for the music, both at the service & the great playlist at the house afterwards.

Thank you, Mike Ying, Holly, Amina, and whoever else from the college crowd for getting the flowers & pulling together more photos.

Thank you, Mary, for really just being there and happy to help with everything from hauling truckloads to the dump or Goodwill to cleaning.

Thanks to all of the speakers at the memorial, both the planned & the impromptu. Angel, Monica, Janet, Jeff & Tom, Mike, David, Dana, Serena, Blase, Ryan, Kevin, Amanda, Amina (hopefully I didn’t miss anyone).

And I just have to thank Blase tremendously again. I thought he was strange at first for coming over all the time – I mean, didn’t he have a life? Why was he coming over everyday at lunch and in the evenings? But, as I said at the memorial, he saw what was coming before we did, and knew how hard it was going to be. And he really helped us through it – and continues to be a great source of strength & solace. Plus he’s a good blogger :-).

Thanks everyone. I hope our paths continue to cross.

Julia

No more hugs...

2010-03-31T00:46:00.000-07:00

When I woke up this morning I wanted nothing more in the world than to give Alex a hug. I remember watching Joe hug him before I did, where I gently held his fragile body.

I remember the earlier hugs he gave me in the hospital bed, and having to negotiate between IV and chemo lines.

I remember the numerous hugs I gave him when he came to my not-so-surprising surprise birthday party which was his first time out after his latest round of chemo.

I remember hugging him when he came out to take pictures at an outdoor climbing trip when he was too weak to climb.

I remember hugging his tall, lean frame after a climbing trip and thinking how I could shape him into becoming a great climber.

I remember all these hugs... and that makes the pain of not being able to hug him all the worse. Somehow I managed to get out of bed. I had told my boss I’d be back in today - so I should get up and go. The world didn't stop just because Alex passed. The sun still rose, people all over continued on their hustling and bustling ways and work still piled up. At least it was a rainy day… somehow that made me feel a little better... possibly just better reflected my mood.

I trudged through my work day on auto-pilot. No lunch visits to Alex. No rush to wrap things up so I could head over to see him for dinner. Just work... and a friend’s party.

Yah, a friend is celebrating her birthday today, but how can I celebrate when I just had a memorial for another friend? But life does move on and I need to enjoy the time I have with these friends … and can do so while still honoring Alex. After all - he was a climbing friend of this person too.

Though I did enjoy the party, I was still too emotionally and physically drained to stay too long, so instead I went over to Janet’s place for a little quiet time. That seemed a little more appropriate for tonight.

Wrap Up

My plan is to gather the rest of the speeches from Sunday (one more to go) and post details about the service. I’ll also post a link to Alex’s pictures, put up any letters/articles he has that should be shared, and then his blog will no longer be updated. It is his blog after all, and if I do continue a blog it should be on my own. Alex’s mom and possibly other individuals also want to post their experiences over the last few weeks to provide a complete picture of our time with Alex (and time without him).

Offline I’ll be going through all the stuff of Alex’s that I’ve acquired and will purge my own closets… as well as my filing cabinet of old papers… as well as any chotchkies that are over a year old (or so)… I just want to do what I can to learn from Alex – or, rather, do what he didn’t do – and NOT save everything!

At least that’s the plan.

But for now I'll just take it one day at a time…

And miss a hug that I’ll never have again.

Hope you liked it buddy...

2010-03-29T23:41:00.000-07:00

Please forgive me for the delay in writing – yesterday completely drained me physically and emotionally... today I'm just absolutely fatigued.

As Alex and I became friends, I fully expected to attend a ceremony for him when he was in his 30s - and I did.
I expected tears to be shed, stories to be told, and favorite songs to be played - and there were.

But the tears were tears of sorrow, not joy.
The stories were of fond memories but no wishes for an even better future.
The music was a painful remembrance of favorite songs that will never be lip synced by Alex again.

The day though was beautiful. In an area known for cloudy and windy weather, it turned out to be an amazing day. There was a thin overcast that kept the sun at a comfortable brightness. The temperature was in the upper 60s and there was none of the usual high coastal wind. The day was perfect for a gathering of friends and family.

Honestly - the day was a blur. I remember a friend coming over to pick me up... of trying to read my speech through tear blurred eyes, trying to speak with a throat closed tight with sorrow. When we arrived in Half Moon Bay I shifted back into execution mode and began taking charge and setting up the house.

At around 10am on Sunday people started gathering on the ocean bluff in Half Moon Bay under the lightly cloudy skies. After a little flurry of sound system tests and getting the family in to comfortable chairs, the ceremony began.

Alex's undergrad adviser, Angel, officiated the day's events. He started things off and explained the lack of a body. Even in his death, Alex continued to give, and gave his body to science in hopes that the knowledge gained by studying his body will help in preventing someone else from suffering as he had. After that the speakers came up and talked about how they knew Alex and what he taught them.

The speakers:

Monica - Being a cousin she could tell of his early years
Janet - A friend since the 9th grade
Jeff & Tom - High school friends who played and sang some of Alex's favorite songs
Mike - Alex's freshman college roommate, who he continued to be great friends with
David - Alex's graduate research adviser
Dana - A friend of Alex's from Cosmos
Serena - A friend since grad school, but more importantly, his recent girlfriend
And then me.

I'll post more detailed information about the service, including the speeches, at a later time.

As my turn approached, my stomach turned, my heart sank and the tears... which had taken a moments pause... began to flow again. I just couldn't believe that my buddy was gone. I JUST saw him... I was just talking with him. Last week this time we were just hanging out... but now he's gone. Anger and sorrow mixed with peace knowing he was no longer in pain as I walked up and took the mic.

Visibly shaking I stood up and tried to calm myself down enough to talk. I wanted them to know the Alex that I knew. I wanted them to be able to hear and understand my words, and try to find some hidden meaning amidst the sobbing that I felt coming. I took a breath. I looked up and I began to talk.

Despite having my speech written, and having had read it through multiple times now, I couldn't tell you what I said. I think it was close to what I had written... but for a time I was (thankfully) on autopilot and just spoke. The one time I did look down at my sheet, I started to tear up and had to pause before continuing. The next thing I can really recall was sitting back down, surrounded by fellow climbers and asking for a much needed group hug.

The remainder of the ceremony was others getting up to share their "Alex experience", followed by a social gather at my advisor’s house surrounded by remembrances of Alex - from his photo albums to a slideshow Serena put together of his life and quotes that people have sent in.

Several hours later the guests left, the remainder of the food was put away, and the house was cleaned. Alex's mom and sister sat in the house staring out at the ocean through large windows. It was as we started packing up Alex's memorabilia that his sister Julia could no longer hold back the tears - realizing the day was almost over, Alex's service was done, and she really did have to say goodbye to her little brother.

Alex's mom had slowly rocked herself into a peaceful sleep. There we let her stay for a couple hours before she aroused herself, realizing that this wasn't her house and that it was time to go. As she hugged me she quietly asked "Is he really gone?" The empty consolation that I gave to this mother that out lived her child, who instead of picking out a wedding dress had to pick out funeral attire, I held her tightly and said "No. He's a part of each and every one of us."

Day Three - The Calm Before the (Tear) Storm

2010-03-27T21:56:00.000-07:00

Today was a day of checking items off the list. We’ve done so much these last couple days – it’s odd to be able to take a breath and relax for a moment. There’s still the occasional moment of trying to hold back tears, but for the most part we just feel… exhausted. Numb about the event we are about to hold, and exhausted for all of the work we’ve been doing.

Whiteboard – check!

More picture boards…

He had an incredible amount of photos… full of smiles, good memories and interesting hair styles.

Now I need to try to finish up my speech for tomorrow. I know what I want to say… but I don’t know if I’ll be able to utter a single word. It’s still just so unreal.

This just sucks. My heart is still broken; my emotional well is just empty… I’m tired of working, I’m tired of crying… but I don’t want it to end. A part of me feels that tomorrow will make it “real”. That it’s a ceremony to signify a finishing point….

Alex will always be with me. He helped me to be a better person and I will always cherish the time we spent together, and regret not being able to make more.

I can’t wait for tomorrow to be over… but I don’t want it to come.

Hope you like it Alex.

-Blase

Updated Memorial Service Information

2010-03-27T12:17:00.001-07:00

The service will be held on an ocean bluff about ½ mile south (looking at the ocean – it’s to the left) of the parking lot. Please wear warm casual clothing and shoes suitable for dirt trails. Bring blankets or low chairs to sit on. Parking is limited, so please carpool.

Directions from the Parking Lot to the Service

Park in the parking lot at 100 Popular St, Half Moon Bay, CA
Go to the paved path and, looking at the ocean, take a left and head towards a line of trees
Continue as the path bends to the left (away from the ocean) and then to the right, and you will cross over a wooden bridge in the line of trees
The path is now a dirt path and is heading back to the ocean
At this point you should see a group of people gathering at the ocean bluff

There should be people and signs to direct you to the correct location.

After the Service

Please join us at 217 Central Ave for light refreshments and to enjoy remembrances of Alex. There is limited street parking at the house, so please walk if possible (1/2 mile). Please remember to remove your shoes when you enter the house.

Suggested Charities

In lieu of flowers/gifts, please make a donation in honor of Alex to one of the charities below, or to any charity that reminds you of him. Also, please check if your company has a gift matching program.

Beat Sarcoma:

Goal: Targets unfunded high priority and high impact sarcoma-specific research
http://beatsarcoma.org/GiftforLifeWithoutSarcoma.html
Donating from the JustGive link reduces the overhead cost
Contact information for personal messages - alextung.memorial@gmail.com
Tax ID: 26-0852086

Cosmos Education:

Goal: Improving science education in developing countries
http://www.cosmoseducation.org/people/ceus/alextung_obituary.shtml

Day Two - Too Busy to Mourn

2010-03-26T22:15:00.000-07:00

It’s incredible how much stuff needs to be done in order to take time to say goodbye…

Calling and checking out sites to pick a location. This included “breaking in” to one (done), someone to officiate the service (done), figuring out how to set up a donation site (almost done), figuring out what we need for the service (basically done), and getting all the needed equipment (done), ordering food (oops), shredding receipts – some so old that the ink had long since given up the account information it held (still going), remembering that we need to eat too, cleaning (still going…), getting flowers, pulling together quotes (still going), and responding to emails – thank you so much for all the words of encouragement; I cannot express how much it has helped throughout this terrible time – selecting music (kinda done), getting friends to help (done), picking up friends at the airport (many more to go), etc, etc, etc…

There is just so much to do… which… in a way has been therapeutic.

At least I feel like I’m helping him… even if he is already gone.

We’ve been laughing plenty over stupid things as our exhaustion sets in… or after finding random / interesting things… and, of course, the tears continue to flow as we read emails from friends, find something that reminds us of a special time with him, or just because we miss him.

The outpouring of love, amazing stories, comments of support and sadness has just been phenomenal. Speaking on behalf of all of us planning the service, we thank you from the depths of our heart. It’s been amazing to see how much impact one person can have. From messages that were sent by college & grad school friends here at Stanford, to letters of love from Africa – Alex, in his all too short of a life, still had a global impact.

So again, Thank you.
Thank you, thank you, thank you.

Now for some pics….

How we’ve been spending the last couple days….

No idea how they did it before computers.

Our whiteboard – trying to organize our thoughts.

Checking out a place… No fence can keep Janet out

Receipts so old the ink had completely worn away!

**Notice the handlebars…

Speaking of handlebars… they do work!

Ok… a brief note on the handlebars…

On Wednesday I had a goatee and a major presentation. My plan for the day was to go in to work, have lunch with Alex, go back to work and give the presentation, shave the goatee and show up on Alex’s door with handlebars. The reason: to make Alex smile.

Actually… for the last while… that has been my goal.

When Alex was diagnosed, I took a page from my mom’s book of how to help those you love… when you really can’t… and made it my goal to make Alex smile each time I visited him.

Often I’d come in with a story of stupidity (which may or may not have really happened)… sometimes I’d come in various costumes or pics of events… and of late – modifying my looks.

He didn’t care for the beard.

Really didn’t like the goatee. (“You missed a spot” he said.)

And I knew he wouldn’t like the handlebars… and not like them to a point of at least smiling. (I could see him just slowly shaking his head while saying “Geeeesh…”).

But then Wednesday came… and I never gave the presentation, never shaved, never got to show Alex the handlebars. I still decided to shave it down, feeling that somehow he’s now looking down on me … slowly shaking his head while saying “Geeeesh…”

Miss you buddy.

But don’t worry Buddy – I’ll shave it off for Sunday.

Memorial Information for Alex Tung

2010-03-25T13:17:00.000-07:00

A low-key memorial service will be held for Alex Tung in Half Moon Bay on Sunday March 28th at 11 am.

All are welcome to attend the event.

Parking

Please park in the lot at 100 Poplar St, Half Moon Bay. There is also street parking.
Parking is limited so please carpool
After parking look for signs indicating where to go

Attire

Casual attire. Dress how Alex knew you: jeans, sweatshirts, sneakers, and climbing shoes encouraged.
Location is chilly and may require a slight hike

Service Information

There will be time for individuals to say something if desired
Bring blankets or low chairs if you'd like
After the service, meet at 217 Central St, Half Moon Bay for light food and drink
The house is a 15 minute walk away
No shoes/sneakers in the house please

Donations
In lieu of flowers we will be asking for donations to a charity(ies) to be determined soon (we are looking for one focused on rhabdomyosarcoma research), Cosmos Education or you may donate to a charity of your choice in memory of Alex.

Contact Information
For additional questions please contact either:

Blase
Janet

We will post updates as appropriate.

Day One

2010-03-25T11:51:00.000-07:00

Last night, while trying to provide words of support and comfort, a friend told me “Tomorrow will be a new day.”

My response: “Yes. Tomorrow will be the first day without Alex”.

To catch you up…

After the nurse came to put in the morphine pump, Alex remained awake and fitful. He was strong enough to make enough of a fuss about having a condom catheter put on that they just went with the diapers. With pump button in hand we tried to let him rest.

For the next few hours Julia stayed with him as he continued to move around in bed. Occasionally closing his eyes and looking like he was about to drift off into a peaceful sleep, he’d then open his eyes wide and start reaching and pulling for the side bed rails. This was interspersed with weak fits of coughing.

2am…

Now he’s trying to get himself out of bed.

Julia is able to stop him and get him to bed, now with the condom catheter on, but we need to keep him in bed. Doing a little ad-hoc engineering we put a large couch cushion next to the bed and wedge it in with a heavy nightstand.

He continued to be fitful.

A call to the nurse on call proved unhelpful.

Finally at 3am, with a major presentation looming on me… I had to go and get some sleep. I wished my buddy a good night sleep. Kissing him gently on the forehead. Not realizing it would be the last time I’d see him alive, but being so thankful for having such a great day.

Day Zero

Yesterday morning, while I was sitting in a meeting with the Web IT Director, Julia called. Hoping against hope that it was just about the packing we planned on doing that day, or a lunch request order, I answered and asked what was up.

She informed me that Alex had just passed.

The Web IT Director, also a friend, was just asking about Alex and how he was doing. After hearing Julia’s words I was able to get out an “It’s over” and did what I could to hold the tears at bay as I went down to my office. Those were the last words I was able to say for the next ½ hr. In my office my officemate wanted to know what was going on with the status of things. Opening my email account I wrote a simple letter to her and other key coworkers who were followers of Alex’s blog, and knew we were good friends, that Alex’s suffering was finally over.

With tears streaming down my face, and my co-worker’s comments of “Dear God, I am so sorry” as she put her hands on my shoulders I packed up my belongings to head out.

Now… looking back on it… driving while crying and so emotionally upset is an extremely stupid thing to do. To make it worse, I received a text from my brother, an attorney who helped out with answering some questions about the will the day before, and I actually wrote him back that it was over.… while driving… while crying… Thank God I didn’t get into an accident.

Score one for stupidity.

At the house, Alex’s door was closed while the nurse was in there preparing his body. I cannot express in words the palpable sorrow that filled the house.

Not enough tears could ever be shed.

Not enough sobs could ever be heard.

Not enough hugs could ever be given to relieve the pain felt at such a loss.

The rest of the day was a blur of notifying people, and forgetting to notify so many others, people visiting – thank you Alan for bringing food.

He did look so peaceful...

He had this little smirk on his face as if he knew a joke… Like a massive stash of years and years of outdated receipts waiting for us, or more empty film canisters… hidden like Easter eggs throughout his place.

Alex’s mom did though want a “family photo” . Which.. umm.. was a little interesting and added a little levity to a horrible, horrible situation.

Guess you could just say that Alex blinked…

The two things I remember most are the wails of his mother and the sights and sounds of his body being wheeled out.

“He’s still warm. He’s still warm….” She wailed.

Clinging to his body she didn’t want her son, her baby boy, to go.

When the last person paid their respects, and they took his body, the clanging of the gurney as it was rolled out was mixed in with the deep resounding sounds of the large wind chimes that hung nearby.

For the rest of the day we organized the medical equipment, collected more and more bottles of pills and medical supplies, trying to find a place to properly dispose of everything and a place for his memorial.

Serena, Janet, Gloria, Alan and I went out to check out a few spots to have his memorial. After a few calls, an attempt to burn out the clutch and several site visits – we finally found a place thanks to my research advisor. Long and emotional day… and feeling weak and weary from tears and heartache, we gathered together and went out to eat and then went to our respective homes to try and get some sleep.

Day 1

We are now back at Alex's old place making final arrangements for his memorial service.

Please stay posted as we finalize the information.

At a high level it will be held this Sunday, at 11am in Half Moon Bay, CA.

Transitions...

2010-03-24T01:08:00.000-07:00

Hey Alex-fans!

So my name is Blase and I’ll be updating Alex’s blog on his behalf with the help of others. Please bear with me as this is my first time blogging.

I’m a friend of Alex’s and have truly enjoyed our growing friendship over the years. He’s an amazing fellow – friendly, caring, smart… could work on his climbing footwork… but otherwise an all-around great guy. I met Alex when I taught the Strength & Conditioning rock climbing classes at Stanford University and we continued to be friends afterwards. Working for Lucile Packard Children’s Hospital (and having an understanding boss) has afforded me the ability to be near him throughout all of his treatments. My previous experiences of having a grandmother who passed due to cancer and a sister who just won her 4^th battle with it, has helped me to have an understanding of what to expect next… not that it made it any easier.

So… now for the hard part.

On Monday March 15^th the doctors decided it was best to stop the chemo and Alex was given weeks to live.

He’s done a valiant job fighting off the cancer over the last – almost 3 years now (6/2007) – and has come through some rough surgeries and hard times. But now it’s time to just make him comfortable and prepare for his departure from this world.

At a high level…

Since then I’ve seen him slip away – watched as he went from being able to move and feed himself on his own to requiring help with everything he does. Mentally he’s gone from making wisecracks to having a hard time processing simple questions. Some of this is may be the drugs, some his condition.

… I’m losing my buddy… and it really sucks.

Despite this – over the past week we have had some excellent visits and we’ve made excellent progress on preparing for end.

The week in review…

Alex Tung, PhD.

Serena has been doing an amazing job working on pulling together his thesis. His committee has agreed to review it and will be awarding him a PhD shortly! Thanks also to Serene and Ray for running around and getting signatures.

On Sunday, Serena made delicious tonkatsu:

Alan then labored away in the kitchen to bake us some yummy sugar cookies. We did a comparison of square versus round cookie dough, which does actually yield slightly different results.

On Tuesday, Mary and Brooke came over for lunch and brought a feast of home cooked food.

For lunch on Thursday, Mary, Linus, and I came by with Thai food.

Channeling our inner Clint Eastwood.

Friday was L&L Hawaiian BBQ with John and Serena

Saturday we were able to get out and go for a walk at Crystal Springs Reservoir with Serena and Yves.

After all this exercise, Alex was pretty much out of it by Sunday. Janet, Serena and I did get out for a brief walk him in his wheelchair and portable oxygen tank, but that was it.

Since Alex mostly slept the day away, Julia and I worked on going through his office stuff. We quickly learned what a packrat he was. Receipts from 2002? Empty packages? Several outdated versions of software? Toilet paper!??!

We categorized the materials as: junk, items needed to complete his thesis, “hold for 3 months and if we don’t open – trash”, and keep (photo albums, important mementos, etc).

At first it was slow going, but eventually we picked up the pace.

We hated throwing anything out (other than the receipts and empty boxes), but realized that we couldn’t keep it all. We can still keep Alex, but we don’t need to keep all of his stuff.

But yah – it was tough.

It was like saying goodbye to him one item at a time.

Monday was worse… but mostly because of all the dust.

His desk…

Even after having done a bunch of cleanup…

Alex’s former residence – where he still had just way too much crap – hasn’t properly been cleaned since the house was first built! There were cobwebs on the ceiling, a thick layer of dust on his stuff, and even a vine growing into the bathroom. It was an allergy hell… and emotionally much worse than going through his office stuff.

Janet, Julia and I had to take a hard look at things. Just so many pieces of chotchkies, which we were sure meant a lot to him, but their meaning was often times lost on us.

Besides the same boxes we used for the office stuff, we also added a box for Serena to review and a “donate in 3 months” box.

God there’s just so much stuff…

Besides going through all of his hardcopies of stuff, we also began going through his computers (3) and external hard drives (3 that we know of so far). The plan is to convert the computer hard drives into external drives for now and go through them later on.

Honestly… out of all of the things we went through I’d love to hold on to a drive… as each of them are filled with photos and vids he’s taken over the years. It’s just a great way of seeing the world through his eyes.

Now – on to today…

Where yesterday he was completely out of it, today (Monday) at lunch he was clear and alert enough to make a few smart-alecky comments. I loved it.

Physically though he’s just skin and bones.

I fed him by hand and helped him with all of his transfers.

It really sucked to see how much he degraded… and has been hard to see.. . but yah – mentally he was there… at least at lunch.

In the evening I was back again, and again hand feeding him and having him drink some water from a sponge… but this time, at one time he looked me in the eyes and asked me what my name was.

That hurt.

It’s been a long day of visitors, including his care team, so maybe he was just exhausted.

But yah – having seeing a grandmother fade away due to cancer, and a grandfather due to failure of practically everything – I did expect this to happen… but it doesn’t make it any easier.

I just smiled, told him my name, that I was a friend and kept on feeding him.

I’ll just keep on loving on him.

Timing…

So.. his care team did meet and determined he was mentally capable of signing his forms, etc and estimated that he has 2 days to 2 weeks left.

Alex didn’t want to know the timing.

Maybe he’s still hoping he’ll get better, but in a brief lucid moment he had last week he told his sister how surprised he was at his decline.

So it’s time to get things ready…

Preparing…

Alex wanted his body donated to science so I went to Stanford Med School and made the necessary arrangements for something that’ll happen all too soon.

We also were able to get him to sign his form (will, insurance, etc) … though his once very stylish signature now more resembled scribbles – I did see him sign it and Janet and I stand by as witnesses.

I also went to the Palo Alto Wastewater Treatment center in order to properly dispose of the expired medicines.

Ending the day strong…

Joe and Christina stopped by for a visit, and Alex insisted on getting out of his room (“I’ve been trapped in my room all day”) and eating at the dinner table.

It was great to see him up and about. Christina did a great job helping out and assisting him with eating.

The nurse did come back again late in the evening to attach the morphine pump to his port. Hopefully that’ll help with the pain and ease with the final transition.

It sucks to lose such a good guy, and to lose him so fast.

More updates tomorrow, but for now, time for sleep...

Bombshells

2010-03-07T22:20:00.000-08:00

(Written last week on Monday) (2/24/10)

Well sh*t. I saw my oncologist two days ago and she had bad news about the CT scan from Thursday. Basically there are new lesions (4-5) in the supposedly healthy portion of my liver (i.e. the part they didn't cut out). This section showed nothing last time we checked right before the surgery. So. . . I'm back in the hospital for more chemotherapy. This time it's high-dose ifosfamide, a drug I've had before but apparently works differently in high doses. It will be 7 days here, two weeks off, 7 days here, two weeks off, and then a CT scan to check.

How do I feel? FREAKED OUT. This is obviously not the news I wanted. Doc says if we were to sit and do nothing, it'd be 3-4 MONTHS. As usual, I have to take it day by day, but it's starting to feel like my options are running out.

A week later, a little bit calmer. . . and at home
(3/6/10)
They rushed to admit me to the hospital that day on the 24th but I didn't get that first dose until 2:30am anyway despite being checked in around 4pm. I guess it wasn't really a rush, just kind of urgent to get something going.

Still pretty frazzled right now. At the very least I'm at home and not having to be in the hospital. We weren't able to complete the ifos regimen becuase I was having all sorts of crazy side effects - hallucinations, extreme fatigue, twitchiness in my legs and fingers/arms, general loss of motor control in my fingers, and of course the usual nausea sans (thankfully) vomitting. Oh yeah, and I started having pretty high pulse rate but surprisingly normal blood pressure. Plus, the stuff they started giving me to reduce the side effects also started turning my pee and skin a little blue. That's always fun, eh? I think it's finally run through its' course, since my pee is returning to its normal hue.

I'm still feeling pretty wrecked, but we'll see what my doctor says about starting up again. We submitted paperwork last week to get another drug approved for compassionate care use (i.e. insurance company won't accept usage but company can)

At home, a little lighter

2010-02-21T21:33:00.000-08:00

(2/19/10)

Well, I'm back home with a huge gash across my abdomen, but it seems to be healing up and feeling better day by day. I ended up spending about a week in the hospital (2/4-2/11), but most of the stay was uneventful. Unfortunately, I'm still having some mild fevers, but they're not quite as bad as they have been in the past. Nobody seems to know where they're coming from - could be infection, but that's unlikely, since they cultured my blood like crazy in the hospital; could be just post-operative fever, in which case hopefully it'll go away soon; or it could be due to the remaining tumor.

The surgery itself went well, although they managed to nick my bile duct or something by accident, so repairing that ended up taking a little longer than expected. Apparently the surgery was trickier than expected. Since the liver tumor's main blood supply had been cut off by the previous embolization, it started seeking other ways of getting blood and latched onto a few places in the inner abdominal wall. It's pretty amazing what these tumors can do to survive. They're insidious. It's baffling why such a thing should exist.

The total time in the operating room ended up being around 8 hours. Of course I had no idea about any of that, since I was completely knocked out. Since the surgery ended late, they decided to just keep me on the breathing machine overnight, rather than wake me up that evening. The following morning I woke up with a breathing tube down my throat, a bile drainage tube down my nose, a small drainage tube in my side, and a Foley catheter up my, well, you know. All that and about four to five IV lines in my arms and neck (but definitely no bag of chips).

I remember waking up in the ICU to the doctors talking to me, and I was trying to answer but couldn't because of the breathing tube. Definitely a weird feeling to wake up and not be able to talk. I was trying to nod or shake my head, but then I also had some questions, so I signaled for a pen. They gave me something to write on but of course I was so dazed and confused I wasn't really able to write legibly. I think I was trying to ask if taking out the breathing tube would hurt, but I don't think that really came across. In any case, they took it out soon after, and though it didn't hurt, it did feel awfully strange.

As it turns out, it feels awfully strange to have any man-made tube pulled out of any natural body tube/orifice. Later that first day, they flossed my sinuses by pulling the bile tube out of my nose (it was running down the back of my throat to my stomach to drain the excess bile). The next day when I got out of the ICU back to a normal post-surgery floor, they took the Foley catheter out, which always provides a nice little burn. The key for any of these is of course to just do it quickly. It's really not that bad - it feels more weird than anything else. When they finally took my drainage tube out about five days into my stay, the 3rd year med student didn't do it very quickly, and that was just a little more excruciating than it should have been. I don't know, I can't really tell if it's actually painful, or just kind of a burning feel, but it's definitely uncomfortable, and you want those things out as quickly as they can be taken out for sure.

Besides keeping my pain under control, the main goal in the hospital was to get rid of these stupid fevers. Of course nothing cultured grew anything, so they just gave me a zillion antibiotics, based on what they found from the fluid that my IR doc pulled out of that liver mass a while back. Eventually I think they just gave up. I'm still on antibiotics now, and though the fevers persist, they're not quite as bad as they used to be. I can walk further than I could before without pain, and almost stand up straight, though it still hurts to stretch the stitches too much. I think as I start to be more active my body might fight off these fevers as well (crossing fingers anyway). We'll see. . .

So I do have a couple pics from when I was in the hospital. One is of me with all my tubes and IVs, and the other is a photo of my wound. I thought they maybe a bit gruesome, so if you want to see them, click here. Otherwise, you might enjoy this silly picture of my niece, Scarlett (actually my second cousin, once removed). Til next time. . .

** One last note - a lot of people have been asking me about this liver regeneration thing. It is true that it does regenerate, but it seems there's not a lot of agreement about how long it takes. This site, not necessarily scientifically accurate, claims that it will get back to its original pre-surgery mass within a week after a two-thirds removal.

I thought this was pretty hard to believe, but MedicineNet says the same thing, one to two weeks. What my surgeons left behind should be healthy liver, so I guess maybe it will grow back pretty quickly. I just got a CT scan yesterday (two weeks post-surgery), so maybe we'll see from that report what things look like.

New year, new fun

2010-01-27T00:57:00.000-08:00

(1/25/10)

Well, folks, it's 2010, and I have just one question: where's my hovercar? Or really, I'd settle for a hover-skateboard, "Back to the Future" style (Though to be fair, Part II was set in 2015, so I guess science has 5 years to get on that).

Anyway. . .

I'm still chugging along here, but there are ups and downs as usual. My pelvic lesion has not been bothering me as much, so I've been able to walk around a bit more without using my swanky camouflage cane. The latest CT shows the tumor to be holding steady size-wise, so that's a good sign that the Cyberknife did its job.

My liver drainage tube stopped outputting fluid for a while, but then I started having leakage around the entry site instead. It was pretty annoying and gross, as I would have to change the bandages there 3-4 times a day. I started to get pretty good at figuring out which gauze pads worked the best for soaking up the most fluid, though. Finally, last week the IR doc went in and messed around with the tube a bit, injected some blood thinner, and replaced the drain with a bigger tube. He managed to pull out quite a bit of fluid then, and now the tube is outputting a lot more. I was again not fully asleep for the procedure, although I remember less of this one than the previous ones. I do remember that he would call to me every now and then, waking me from a drug-induced stupor, and say, "Hey Alex, want to see what we're pulling out of you?" and he would show me some bits of tissue, explaining that it was probably dead tumor. "Er, that's great. . . " I'd mumble and go back to la-la land.

The next day, at the behest of my oncologist, I met with a surgeon about removing the tumor from my liver. Apparently everyone on my medical team has been wanting this guy to do this for a while now, but he's been reluctant because it wouldn't be curative. That is, he could remove the right lobe of the liver, getting all of the active tumor and dead tumor and whatever else is in there out, but I'd still have the lung nodules and pelvic tumor to deal with. Somehow, though, my oncologist has managed to convince him that surgery is the best next step, especially given that the liver is what's causing the bulk of my problems right now (fevers, abdominal pain, drainage tube), which in turn are requiring me to be on a whole host of drugs that make me tired, constipated, etc. In addition, the embolization has cut off the blood supply to the liver, so it's pretty tough for any kind of systemic chemo drug to get there. That's likely why the liver tumor hasn't responded to the sorafenib, while the lung nodules have.

So, Feb. 4 is the surgery date - I get to lose yet another piece of my innards, and hang out in the hospital for about a week or so. It'll be a big surgery, but Dr. N (my surgeon) thinks I'll be able to handle it well. They're going to take the whole right lobe out, so I'll have a pretty massive scar across my abdomen (chicks dig the Frankenstein look, right?). Amazingly, the liver should fully regenerate itself within six weeks or so. He says I should be back to 85% in about a month (though 85% of what I'm not exactly sure :P).**

As for those pesky lung nodules, they seem to be holding pretty steady right now, but a couple of new small specks have shown up on my most recent chest CT. We're going to keep going with the sorafenib for now, but my doc has another drug lined up that she thinks shows a lot of promise. I guess we'll have to try that one after the surgery and a bit of healing time.

** By the way, I think my surgeon has a funny voice, kind of similar to the abominable snowman from Looney Tunes cartoons. It's even better that he has a pretty good sense of humor, too.

Wahooo!!!

2009-12-23T18:29:00.000-08:00

Finally, some good news!
(12/23/09)

I had a follow-up appointment with my oncologist today, and the chest x-ray showed that my lung nodules have gotten smaller! Woohoo! Finally it seems something is working! We'll get a more thorough CT scan in another four weeks, but for now I'm feeling pretty good about things. My oncologist called me pretty much right after I got home to give me the good news. It's a great early birthday present.

As for the other two fronts, I've been able to walk more than before without pain, so I'm hoping that means the pelvic tumor is responding to the radiation. It still gets achy and sore after a few minutes of walking, but it's not nearly as painful as it was before.

The liver mass is a bit more of a mystery right now. The catheter is still in place, but it's not draining very much fluid anymore. My oncologist doesn't want to have the interventional radiologists mess with the catheter (i.e. try and reposition it) because the systemic drug I'm taking (Nexavar or sorafenib) can cause bleeding. If we did decide to reposition the catheter I'd have to stop the sorafenib for six days, and I don't want to jinx the streak I'm on right now. So liver-wise, we're holding steady for now. As long as something is draining out I guess it's still a good sign. Though it would be nice to get rid of this tube and bag that I have to carry around everywhere.

As for the sorafenib itself, the side effects haven't been too bad, although it's been a bit tough to balance the constipating effects of the pain meds with the whatever-the-opposite-of-constipating-is effects of the sorafenib. A small price to pay for beating down the cancer (woohoo!), I suppose.

Okay, that's it for now. I hope everyone out there has a great Christmas/holiday, and here's to a happy, healthy new year!

War with many fronts

2009-12-10T19:51:00.000-08:00

(12/10/09)

There's no good way to express it. Life in the past few months has been rather shitty. The cancer beast is attacking on many fronts, and I am freaking exhausted. I really don't know how it's come to this, as mid-July found me with a clear PET-CT except for two shrinking lung nodules that had been treated with focused radiation. Then a little lung inflammation instigated a VATS procedure to biopsy my lung, thus pausing chemotherapy. After finally coming home from the hospital from the VATS, pain in my right side revealed a huge liver mass, and further scans showed new lung nodules (left lung) and a lesion on my left pelvic bone. Here's the current battle plan:

Front 1: Liver
Weapon: Radiation spheres and drainage

I still have a drain in my liver, but two weeks ago the IR docs shifted its placement and put in a slightly larger catheter to try and drain out more of the fluid. On Monday I found out the mass is finally getting smaller (it's shrunk about 15% in two weeks), but it's hard to say what will ultimately work the best to drain out the rest of the dead tissue in there. We have the option of putting in some anti-clotting agent and yet a bigger drain (the one that's in there is 5mm), but we're not sure if we're going to to that yet. The good news is that it looks like 95% of this tumor is dead from the radio-embolization. Hopefully the rest will go away with chemotherapy.

In the meantime, I continue to have fevers, although they're a little better than before. An alternating regimen of Tylenol and ibuprofen seems to keep them at bay, but I still get an occasional temperature spike and sweatiness that makes me feel craptastic and pretty much destroys my appetite.

Front 2: Pelvis
Weapon: Cyberknife

While I was in the hospital a while back I had some pain due to the pelvic lesion but it seemed to come and go. Now it's mostly back, but some days I can walk fairly normally (just not for long distances). Basically the pain is in my left groin and it hurts when I put weight on my left leg. The lesion is partially in the bone and partially in the tissue around it, but luckily, it's not too big to be a target for focused radiation. This is where Cyberknife comes in.

Cyberknife is basically a form of very focused radiation that can zap small tumors. I had focused IMRT radiation previously on my lung nodules, but this is slightly different. The Cyberknife uses images in real-time to guide its beam so that it can make adjustments during treatment and therefore be more accurate (supposedly within 0.6 mm). I had my last (5th) treatment on Wednesday, which was relatively painless. You basically just lie on a table for 40 minutes or so while a robotic arm rotates around you and zaps you with radiation. They have a little stereo with iPod dock so you can play your own music during the treatment. On Wed my iPod kept getting stuck on repeat, though, so I was listening to "Bleecker Street" over and over again for the first part of my session. Could have been worse, I suppose.

Front 3: Lung nodules
Weapon: Chemotherapy

It's a little odd to me that the one problem that's not causing me any physical pain right now may yet be the toughest to tackle. The three nodules in my lungs have not responded to the latest chemotherapy (taxotere and gemcitabine, for those of you keeping track), and so we're moving on to another type of drug, Nexovar (sorafenib), which is anti-angiogenic. Basically this means that instead of trying to kill the cancer cells directly, the drug tries to keep the tumor from growing new blood vessels so that it cannot get any larger. It's had some success in kidney and liver cancers, but using it against sarcoma is pretty experimental. The good news is that it's pill-based, so I can just add it to the list of drugs I'm taking every day rather than have constant trips to the hospital for infusions. The side effects aren't too bad, except that some people get "hand/foot syndrome", where they start to get really dry and flakey on their palms and bottoms of their feet. This can lead to blistering and (I assume) pain, but apparently being diligent with moisturizer can help keep this at bay. Hopefully I just won't have that problem.

The drug is systemic, so hopefully it'll have some effect on the bone and liver tumors as well.

Out of the Hospital

2009-11-10T14:39:00.000-08:00

[Aside: This blog is way out of date - I'm out of the hospital right now and continuing with treatment, though the drain drama has not quite completed. . . This post was written last week.]

So the docs came in finally on Friday (11/6/09) and said, "well, we really haven't done anything for you in the past four days, so we're thinking we should send you home with the drain and give it some more time." Well that's comforting. I suppose they were right, but it was a little surprising to get such an anticlimactic end to a two-week hospital stay. Essentially, as I said in the previous post, I had been lying around and waiting for the liver drain output to come down. In the meantime, they would replace my potassium or magnesium as I needed it, but for the most part I guess I didn't really need to be in the hospital anymore.

So, I've been hanging out at home again (my sister's) and trying to deal with these continuing fevers. They do seem to be getting better, but at this point it's been 4-5 weeks. I'm pretty ready for them to go away. . .

In the meantime, I talked to my oncologist yesterday (11/9/09), and since we're pretty sure the fevers are not being caused by infection, we're going to continue with chemotherapy, with the original regimen of taxotere and gemcitabine (we couldn't use this at first because of possible bad interactions with radiation). Apparently there are actually numbers for these drugs - 40% chance of response in soft-tissue sarcomas. Still not great odds, but better than nothing. Rhabdo is notorious for not responding to chemo, especially the second time around. We do have a number of possible choices, though, so hopefully one of them will work.

OMG So much hospital time. . .

2009-11-04T11:31:00.000-08:00

(Written 11/4/09)

Well, I guess I just can't stay out of this place. After two weeks of fevers that weren't going away and weren't getting any better, I'm back in the hospital again. I waited out the weekend and called the clinic on Monday because I spiked up to 102.5 F again on Sunday night despite my mom's best efforts to cool my body with cold packs and wet washcloths. The interventional radiology (IR) folks also called me on Monday and said the CT scan showed a pocket of fluid in the liver that could be an abscess, so they wanted me to come in and have a tube put in the liver to drain out the fluid. Meanwhile, the oncology team wanted me to come in and be admitted to get IV antibiotics, and so began my latest stay at Hotel Stanford.

Shaky Shaky

So Monday night they started dosing me with Zosyn and Vancomycin, and on Tuesday the IR folks went ahead with the drain placement. Again I was awake for the procedure with some happy juice to make me woozy (Fentanyl and Versed). I think they gave me a little more than usual, though, because I don't remember much of what happened. What I do remember is that part way through I started shaking like crazy, and apparently my heart rate shot up to 180 bpm (normal is 60-80ish). Apparently this is pretty common when they put in drainage tubes, because some of whatever's in the pocket you're trying to drain can get out into the bloodstream and cause the body to react badly. I guess the IR doc was concerned about this episode leading to sepsis - I still don't really know what this is, but it seems super bad - so I got to spend the night in the ICU again. This time around wasn't so bad, since my pain wasn't as bad as before, and I actually ended up chatting with the night nurse a bit (If you'll recall, the ICU here has two connected rooms with two beds each, and one nurse per two patients, so there's a lot of attention. But there's a bit of downtime as well, since in this case the other patient couldn't really talk.).

Waity Waity

After the one night they moved me back to E Ground, where I continue to wait for things to get better. The drain has been giving more output than the docs originally expected, so they keep waiting for the output to come down. The first couple of days it was outputting almost a liter a day, now it's down to a couple hundred mL, but they'd like to see it down to <20 mL or so. It's mostly frustrating because no one can seem to make a decision about what to do. The IR folks say they could possibly do another procedure, but it's unclear that that would help anything. The surgeons don't want to operate, and the oncologists aren't sure what to do since there's no infection.

Radioactive Man's weekend, etc.

2009-10-25T14:35:00.000-07:00

(10/25/09)

Workin' for the Weekend (10/10/09)
I left off after the radio-embolization on Thursday, when I was in extreme pain until the docs and nurses finally figured out a good narcotic regimen to make me nice and drugged (oxycontin + dilaudid = happy). Well there's not a whole lot to tell about the weekend after that. After the embolization, I started having the same fun "post embolization syndrome" symptoms as before: fevers, night sweats, pain, etc. There was a bit of a discussion among the doctors about what to give me to treat the fevers. the two main choices are tylenol and ibuprofen. The problem is that tylenol can have liver toxicity at high doses (not actually that much of a problem for me since my liver function tests had been fairly normal despite all the crap that's been going on in there), and ibuprofen can tend to thin the blood and potentially cause bleeding (not something you want so much after you've just had a procedure to stop internal bleeding). In any case, there was a lot of back and forth on this, and it seems like we've settled that Tylenol is the best bet for now, since my liver function has been fairly stable.

Also, I had to keep to the "3 feet for 3 days" rule, which meant because I had radioactive particles in me, I had to stay at least 3 feet away from small children and pregnant women for at least 3 days. Not a tough rule to follow, but I did keep hugs to a 2-minute maximum. . .

Chemo Bemo
I finally went home that Sunday, but the fun fevers were not over. More about that in a bit. The real question was what to do next. I had an appointment with Dr. G on Wednesday and she suggested starting another round of chemo as soon as possible. We were originally going to try taxotere and gemcitabine, but since one of them has some toxic interaction with radiation, she suggested taxol (similar to taxotere). The nice thing is that it's just a one day (3-hour) infusion and doesn't have a whole lot of crazy side effects. They just have to give it to you slowly at first to make sure you don't have any allergic reactions. The plan would be to get two doses (every three weeks) and then scan to see how things look. Taxol has a 25% chance of shrinking the tumors. Not great odds, but not terrible either. At some point my luck needs to flip, right?

So in any case, I went to get my first Taxol infusion two days later on Friday, about a week after having the right side of my liver essentially killed off for the second time. Sometimes I wonder how I'm still alive at all with all the "treatment" they're giving me, but I'm still kickin'. I had to go in on Saturday to get a dose of Neulasta, which is basically a longer-lasting version of neupogen, to help my white cell counts recover. Luckily, I didn't have too much reaction from the chemo, as far as I could tell. Compared to the pain and fevers and other uncomfortableness, the chemo was actually relatively easy to take. The only major symptoms were that the neulasta shot made my body really achy for a couple of days, and the Taxol is causing neuropathy in my fingers and feet. This basically means I have a constant tingling/numbness sensation in my fingers, toes, and the pads of my feet. It makes typing and walking kind of interesting but it's not unbearable. Hopefully it'll go away after a while.

Riding the fever roller coaster
Last time it took the fevers about 10 days to go away. This time, well, they still haven't gone away, and it's been about 16 days. Granted, I had a round of chemo shoved in there and this was a radio-embolization as opposed to a temporary gel-foam embolization, and so one might expect a longer recovery. Still, it is not fun to feel like crap for this long. Right now I'm taking Tylenol around the clock to try and keep the fevers down, but they still come regardless. Actually, the IR and oncology docs both are suspicious for infection at this point, so I had blood cultures drawn on Wednesday, and again on Friday. So far the results have been negative. I had a CT scan on Friday to see if maybe there was an abscess (a pocket of infectious fluid) growing in the liver, but they weren't able to tell much from the scan. I did get a dose of IV antibiotics (Zosyn, for those of you keeping track) and I've been on Augmentin since Monday. None of this seems to be doing too much good, although I have been "feeling" slightly better despite the fevers. That is, even though my temp is up, somehow I don't feel quite as crappy as before. Maybe it's just wishful thinking, but I'll take all the positive feelings I can get, even if they are a bit delusional :P.

Watch Out, Radioactive Man!!

2009-10-08T12:54:00.000-07:00

(10/12/09)
My work week:

Monday (10/05/09)

CT angiogram didn't show anything conclusive in terms of finding the source of the bleed. Nuts. But I was definitely bleeding because my hemoglobin counts kept slowly dropping. I was also having episodes where I would stand for a while and start to feel nauseated and drained, but once I sat down I'd be fine. I imagine this was partly because of dehydration (I wasn't allowed to eat or drink before the angiogram) and partly because of having low blood counts. Since then I've been on constant hydration, which definitely helps. After the angiogram, they still wouldn't let me eat or drink, since they wanted to see the results and potentially do another procedure. It got later and later, and I was pretty sure they weren't going to do anything that night, but still I was ordered NPO (non per ostium = nothing by mouth).

Tuesday (10/06/09)

I didn't have to do much, though I did get a blood transfusion to boost up my counts. In addition, they scheduled me for a radio-embolization procedure, which is similar to the previous liver embolization procedure I had, but it uses radioactive particles to try to embolize and kill the tumor. Previously they used gel-foam, a clotting agent to cut off the blood supply to the right hepatic artery, which feeds most of the right lobe of the liver. The gel-foam dissolves after 3-4 weeks, however, so it's possible that after it dissolved it just started bleeding again. Hence, my return to the hospital.

The radio-embolization procedure is done in two parts on two days. First, they go in with a catheter through the femoral artery in the groin and clot off any arteries that go from the right hepatic artery in the liver to other organs, like the stomach or intestine, so that no particles are delivered there (they can cause nasty ulcers and other badness). Then they inject a radioactive tracer and send you to nuclear imaging to make sure they contained the right areas. The next day, they go in and actually deliver the radioactive particles.

Once we figured out that the first part wasn't going to happen today, I was finally allowed to eat. Hallelujah.

Wednesday (10/07/09)

We basically waited all morning for the first part of the procedure to start. Somehow I had forgotten to ask the most basic question of the IR docs: how long would every thing take? So I asked the oncology attending: he said the procedure itself would be about an hour, but prep time and imaging might take longer. The nurse said probably 3 hours for the first interventional part and about 2 hours for the imaging, maybe 6 hours total. They took me out around 11:30am and straight into the IR suite. I'm not sure how much prep there was but I was definitely in there until at least 5pm. I was awake the whole time, though under some sleepiness medication. I could see the screen a little bit as they injected contrast into my liver and lit up all the arteries there. They took a few images first and then started blocking off arteries that feed from the liver to other organs. I'm not sure how many stray arteries they blocked off, but I guess it was quite a few. At the end, they injected the radioactive tracer and sent me to nuclear medicine for some scans. The scans took about an hour, and I didn't get back to my hospital room until 6:30 or 7pm. Turns out the nurse was much closer than the attending, but maybe he was playing the "Price is Right" move of betting $1 so as not to go over.

So there was a bit of confusion when I got back. I called my oncologist to let her know I was back in the room and to see if she was still able to come by as she said she would. She called me back and said she had spoken with my previous oncologist (Dr. J, the one who went on sabbatical) and she (Dr. J) suggested doing a right lobe liver resection to just get rid of the mass all together, so that it wouldn't keep bleeding and cause problems while I was getting chemotherapy later. Well then did we still need to do the liver embolization? Or at least, did we need to do it with radioactive particles (the IR docs said that it wouldn't be safe for the surgeon to operate for a least two weeks after the embolization)? Unfortunately we wouldn't get a chance to talk to the surgeon (Let's call him Surg N), since he'd be in surgery (imagine that) all the next day. So, what to do, what to do. . . We talked to the oncology resident who had been following me (Resident V), and he said this was the first he had heard about doing the surgery, so he would go and try and coordinate with everyone to figure out what was going on.

Thursday (10/08/09)

So in the morning Resident V came by and said the embolization procedure was scheduled for 1:30pm. He said he talked to Dr. G (my onc doc), who had spoken with the IR docs, and everyone seemed to agree it made the most sense to continue with the embolization. The other sticking factor was that the radioactive particles that they were going to use would expire the following day, meaning they had to be used that day. Also, apparently it takes a week to get the particles, so if we were to wait a day, talk to Surg N, only to have him say he couldn't do anything about the bleeding, we'd have to wait another week to get the procedure done.

Sometime in the morning a medical student showed up to chat with me. At first I was a little annoyed, because one of the teaching coordinators had come by the previous day and asked if she could have one of the med students come in to practice taking patient histories. I normally would say yes, but this time I was just not in the mood, so I said if they couldn't find someone else then I would do it. Anyway, my initial response of annoyance dissolved immediately when I realized she was a) a 4th year (why would they be sending 4th years to take patient histories?) and b) was there to get my history for Surg N. She said he had specifically asked her to come see me for this purpose. My mom and I told her a few of our concerns, that the embolization might delay the time to do surgery, which in turn would delay the time within which I could get chemo, etc. She reassured us that Surg N had a way of seeming to know what was going on everywhere in the hospital. Specifically, since he obviously knew about my case, he probably knew what steps were being taken, and since he hadn't taken any steps to change the course of action, he probably agreed with the current course. Well, that was at least somewhat reassuring. Later she came back after speaking with Surg N in the OR (operating room) to let us know that yes, he definitely agreed to proceed with the embolization. Furthermore, he had said that he wouldn't do surgery to stop the bleeding anyway, so this seemed like the right course.

Meanwhile, the IR docs were working on an emergency procedure that ran late, so I was waiting around as usual and didn't actually leave the room until about 3pm or so (I had been NPO again since midnight). Apparently right after I left, Surg N showed up to talk with me. Doh. Anyway, they carted me down to the same suite and did the same prep: I shifted from my bed to the operating table, they covered me with a sterile sheet, and gave me some happy cocktail to make me slightly sleepy. The IR doc came in and they did things in much the same way, taking some images to start with. Then they delivered the radioactive particles. The doctor showed me the device they used. The particles are kept in this rectangular plexiglass container with two small tubes coming out. One tube gets attached to the catheter that was in my femoral artery, and the other is attached to a syringe with saline in it. Inside the container the tubes lead down into a small vial that contains the particles, so somehow as saline is forced from one side it pushes the particles out the other side and into my liver.

Up until this point, the procedure had been pretty painless. After the radioactive particles were injected, though, they still had to stop the bleeding, and that's when they delivered the embolization particles. Now, that was painful. All of a sudden the blood supply to the whole right lobe of my liver was cut off - turns out the body doesn't like that so much. So in the last couple minutes of the procedure I was literally writhing in pain. They gave me some pain meds and then sent me to the recovery room to get my pain under control. The kicker there is that the doctor didn't put in enough orders for meds, so the recovery room nurse just had to keep calling and paging the doctor to write for more medication to get the pain under control. Finally, she got enough to get me back to my room (which was private, now that I was radioactive). They ended up having to switch up some of the orders in my room, too, because the original orders were definitely not enough. That first night was pretty rough as far as pain goes, but finally I got a push of IV dilaudid, and things felt all right in the world.

----- OK peeps, I've been trying to write this on and off over the past few days, and I need a break. I feel I need to post this, so I'll have to finish the hospital stay update at a later time. Right now I'm at home (got here Sunday) and am doing okay except for continuing to have fevers and annoying sweats. I have an appointment with Dr. G on Wednesday to figure out next steps. Cancer sucks.

The good and the bad

2009-10-05T23:45:00.000-07:00

(10/05/09)

Just a quick update tonight. I did finally get the PET-CT today (the floor attending apparently pulled some strings to make that happen - they were going to make me wait til Wed), and the unofficial read is that the liver mass is mostly blood! Yay! Part of the bad news is that the edge of the liver did look brighter on the scan, so it could be tumor. It's also possible that it's just inflammation, but I'm not holding my breath on that. The other part of the bad news is that the official read on the CT scan from Saturday says that there may be a lesion on a bone in my pelvis, something that's new since the last scan. Apparently it looks like it's breaking down the bone there. Nobody's really said much about that, but hopefully the official PET-CT report will have more information.

As for next steps, I got a CT angiogram done earlier this evening to try and track down the source of the bleeding in my liver. Apparently my blood counts have been slowly dropping, and so they think there's a slow bleed somewhere there. Unfortunately my doctor friend says angiograms have a tough time localizing the source if the bleed is slow, so it's possible they still won't know whence* it's bleeding. Right now I'm just really thirsty because they haven't let me eat or drink since 4:30pm. It's now almost midnight. They want to see the results of the scan before letting me eat or drink, in the event that something (probably another embolization) needs to be done tonight. Urgh. At least I got them to give me some saline so I'm not completely dehydrated. I am tired though, so dis post ends here.**

* "from where" - couldn't resist the chance to use an archaic subordinating conjunction. Yes, I'm a little bit of a grammar freak.

** well, except for these footnotes :P

Dear cancer, I hate you

2009-10-04T18:50:00.001-07:00

(10/04/09)

I'm in the freakin' hospital again. Agh.* Just when I was starting to feel better this week - finally able to do more than lie on the couch in a vegetating stupor (I even went out for dinner on Friday with some friends: thanks guys!) - I started having pain in my right side again. It started Wed night when I was watching "Monsters vs. Aliens" (a much funnier movie than I expected) and my right side felt sore from laughing. It was just positionally sore for a couple days, then it started hurting more and more consistently. Finally I was having trouble sleeping from the pain and came into the ER on Saturday morning. The symptoms were similar to the last time I had a liver bleed, so they wanted to do a contrast CT to check for bleeding. The slightly good news is there was no sign of bleeding. The bad news is that the mass has almost doubled in size since Sept. 1. WTF? It looks like a freaking grapefruit on the scan.

For now they've kept me here for monitoring to make sure the mass doesn't rupture and start bleeding. Right now we just don't have enough information about what the mass is. The CT can't show if it's blood or tumor. A PET-CT could show how much of it is tumor (if it's the whole thing it should light up like a beacon) but of course you can't get a PET-CT on the weekend because apparently there's just not much call for emergency PET-CTs. This is just one of those rare cases where it'd really be useful to have one in a hurry. One of these days I should be able to go to Vegas and cash in this bad luck for something good.

In any case it hasn't been too bad waiting around. They've been controlling my pain pretty well and I've had friends in town to visit (maybe not the party they were looking for, but they've been good sports to hang out here).

Supposedly the oncology team got in touch with someone in nuclear medicine this weekend, so they at least know of the problem. Of course the PET-CT hasn't actually been scheduled yet, but the plan is to do it tomorrow morning.** Hopefully then we'll have the information needed to act next - either drain the blood or do something about the tumor (or both). The astute reader might ask, "Why not just go in and drain the thing now? You know it was bleeding before, so some of it must be blood." Well, the problem is if they stick a needle into the tumor, then when they pull the needle out, the track it was in can actually spread tumor cells around, which is bad news. So, again, it's hurry up and wait. . .

* "Agh" obviously doesn't cover what I'm feeling right now, but a post filled with rampant cursing probably isn't very pleasant to read either. But really, I'm f&#king sick of this sh*t. It really seems like every time I'm starting to have good news, more sh*t piles on. Don't get me wrong, I'll fight it tooth and nail, because cancer is a cowardly bastard and doesn't deserve any kind of respect. But damn, this f&#king sucks.

** Fun little fact: apparently it's really hard to get a PET-CT done as an in-patient procedure. My doctor friend Sarah says it's because of the way the reimbursement gets handled. Somehow an in-patient scan is not reimbursed as much as an out-patient scan. That's right, somehow the same exact procedure costs two different amounts. Another quirky obnoxious insurance issue that makes no sense.

Nine down, one more to go

2009-09-24T18:38:00.000-07:00

(9/24/09)

What a way to spend a summer. Well, not the whole summer. I guess things were okay up until the beginning of August. The Navelbine/Cytoxan treatment regimen I was on wasn't too bad to handle. I was still able to get out and climb a bit, go to school, do some normal stuff. Then August hit with its lung issues, surgery plus complications, then the completely unexpected liver issue. Now it's almost the end of September and I can barely walk around the block without getting winded.

Emotionally I think this has been the hardest part of this whole ordeal. Somehow, in the beginning, partial denial plus hopefulness buoyed my spirits. I really thought that year or so of chemo was going to be the trick. Even with the lung recurrences, it looked like the radiation therapy was doing its job. Now, trying to recover from lung inflammation and facing the possibility of metastasis in yet another organ. . .

I think what helped before was that despite what was coming at me, I could still occasionally pull of a semblance of a life. I could get myself up a couple of climbs at the wall, I could get into school and make a little progress on my thesis. Heck, I defended my thesis a week after my first VATS (lung surgery)! I even took a few trips with friends and got to go to India for the first time.

Right now, though, it's all I can do to haul myself out of bed in the morning. Sitting on the couch is of course super boring, but it's about all I can handle. Even conversations get me a little winded. I know it will get better. Day by day my appetite gets better. Hopefully I"ll start to gain back those ten pounds I lost in the past month or two. My mom's been feeding me quite well, and I've got good friends coming by to visit (though there could always be more - hint, hint).

Anyhow, for now, I'm looking forward to getting tomorrow over with, and getting a week's break. I've lucked out in some sense, in that the worst side effect of this Irinotecan drug - diarrhea - hasn't really affected me at all. It's just left me incredibly tired. Whew.

Day 4 of Chemo Goodness

2009-09-17T19:50:00.000-07:00

(9/17/09)

Well, all the little fresh kiddies are running around campus now, with their laminated name tags hanging from red lanyards. Class of 2013 has arrived at Stanford. Oh man.

Meanwhile, back in my fun world, I pushed through Day 4 of the Irinotecan Temodar regimen that we've been meaning to start for, oh about a month and a half now. Aside from feeling crappy, nauseated, and generally tired, it's not been any worse than any of the previous regimens so far, so I guess that's a good thing. The difference is that I'm coming into it while still recovering from two semi-invasive procedures that have been, well, quite traumatizing.

Strangely enough, the most recent liver embolization, which really only left a small incision in my groin (ah the wonders of minimally invasive therapy), has been the hardest to get over in terms of pain and other side effects like fevers and night sweats. I've just been exhausted and needing to sleep for hours and hours a day. The VATS procedure on my left lung has healed up quite well, and aside from a slightly misshapen left pectoral muscle, it hasn't been too painful at all. The main trick is to keep from sneezing (ouch).

Zap it?

So here's the state of things. As far as we know, the biopsies from my lungs came back negative for malignancy. In fact, all they could see was "inflammation", caused by what, we don't know, but it should go away over time. The real question now, is the pesky liver. The embolization stopped the extraneous bleeding, but scans can't distinguish between blood and tumor or whatever else might be there. So, it's a bit tough to tell how big the tumor is or if there is one at all (could have been some spontaneous bleed). Right now we're going to hit it and all of extra little baddie cells that might be floating around with some chemo for a while. We'll scan again in a couple months and see how things look.

For now

I pretty much feel like crap. I've spent two to three weeks being in pain, exhausted, and having fevers and night sweats. Most of the pain has died down, I"m still exhausted, now nauseated, and generally trying to stave off the diarrhea that's supposed to be the main side effect of irinotecan. In a word, it sucks.

I've been mostly recovering at my sister's new place, which is pretty close to campus, so I guess that's a bit of a convenience. It's hard to focus on doing much else than just sitting around and vegetating though. Not exactly what I thought the end of the PhD was going to be. Anyhow, if anyone is up for visits or hug deliveries, I'm all up for it, if you can put up with my incessant hiccuping. . .

Can't fight the fever

2009-09-02T19:02:00.000-07:00

(9/2/09)

Home at last!!

Well, only about two weeks later than I was expecting, I'm finally back home. I'm still having some low-grade fevers, most likely due to the post-embolization syndrome (that's a great catch-all, isn't it? "Oh doctor I'm having major headaches and bloody noses after my ankle sprain." "Oh that? That's just post-ankle-sprain syndrome. It's very common, nothing to worry about."). It turned out that I was having some slightly worrisome symptoms, as my fevers were mostly low grade until two nights ago, when I had one that spiked past 102F. Given everything that was happening, the doctors wanted to be conservative, so they kept me on antibiotics and watched me for another day. I had another CT scan yesterday to see if there were any other possible reasons for the fevers. The scan showed a couple things: my gall bladder is inflamed, and there were a couple of little bubbles inside of the liver mass. The theory is that the gel foam got into the arteries supplying the gall bladder, so it's not able to compress as much as it normally does. The liver bubbles are probably also from cells dying and releasing gas or from the gel foam itself, which has gas inside it. There's a minor possibility of infection, but it's not likely since my white counts weren't elevated.

Oh, the gall

Yesterday the docs laid out the options for dealing with the gall bladder issue:

Watch and wait - it's very likely the inflammation will go away on its own; apparently it's very rare for people to get CT scans this soon after an embolization, so it's entirely possible that this happens in most people and they just don't detect it;
Insert a catheter into the gall bladder to drain the fluid and allow it to be less "stressed" for a while (this would require carrying around a little pouch that I would occasionally drain for 4-6 weeks); and
Have surgery to remove the gall bladder.

Luckily, we've decided to go with number one, given my good response the past couple of days. On Friday I'll talk to the oncology surgeons about possible options for the liver mass (I will eventually talk to the radiation therapy team as well), and next Wednesday if all goes well I'll start that new chemo regimen we've been waiting for. . .

Until then, I'm trying to heal and enjoy being at home. It's hard not to feel freaked out about this liver thing, but as usual, speculation only seems to lead to unanswerable and worrisome questions. Right now there's really no new information beyond what the scans showed: there was a mass that was bleeding near the edge of the liver capsule. The mass is pretty large, 4-6 cm, but it's unclear how much of that is blood and how much is something else. It seems unlikely that something that large would have grown in the span of a month and a half, but I suppose it's possible (or it's possible that it was much smaller but located precisely to cause a bleed). There's an outside chance this was all caused by a random blood clot, but the radiologists seem to think the mass doesn't look like it has a homogeneous make-up.

A funny thing happened on the way to recovery

2009-08-30T22:28:00.000-07:00

(8/30/09)
Out of the frying pan. . .

So I finally got out of the hospital on Tuesday night. My lung did its job in sealing itself up, though there was some residual air left in my pleural space that occasionally makes a fun gurgly feeling when I get up out of bed. I went to see my oncologist on Wednesday, and the good news is the pathology found no signs of cancer. No signs of anything else, either, though. No infection: viral, bacterial, or fungal. The prevailing theory is that it's a form of pneumonitis caused by radiation therapy and possibly enhanced by chemo, which of course is very rare and unexpected for the low dose of lung radiation I was getting. That should heal itself over time. The only treatment we could do now is for me to go on oral steroids, but I would have to do that for six months to prevent backlash with tapering, so I probably won't be doing that.

Okay, so here's the bad news: I'm in the hospital again. I was at home recovering from the surgery when Thursday I started having pain in my right side (surgery was on the left). At first I thought it was just a cramp or something, but I had a bit of a fever that night and by morning the pain hadn't gone away. My mom and sister took me into the ER on Friday, where luckily I was one of the first patients in their second floor "holding area" (this was around 12:30pm). They were surprisingly efficient, though my history probably helped expedite things along. I spent the afternoon being wheeled from the second floor down to the different radiology labs (chest X-ray, then ultrasound, then CT). While I was getting the ultrasound, the radiologist came in to tell me there was an abnormal mass in my liver, right where I was having pain. I was baffled. How could this be? Frankly, I'm still baffled. My latest PET-CT on July 16th was clear, and the chest CT I got on August 11th didn't show anything in the section of liver that was captured. I'm not sure anyone knows exactly what this is.

After the CT scan with contrast, the docs told me the mass was hemorrhaging and bleeding. Someone from interventional radiology came to talk to us in the ER, and he recommended that they do an embolization procedure to stop the bleeding. Although my bloodwork didn't indicate that the mass was bleeding quickly, its location made them worry that if it were to grow and protrude outside of the liver pocket, it could become pretty dangerous. They would do the embolization as a catheter-based procedure, entering an artery in the groin and navigating into the liver to deliver the embolizing agent that would stop the bleeding. It's funny - the application of my research focuses on these kinds of procedures (except I was focused on the heart) - so a nerdy part of me was excited to experience the procedure myself.

Embolization Nation

Things went pretty quickly after that; they wheeled me from the ER to one of the interventional radiology suites with the big C-arm for fluoroscopy (real-time X-ray). There was a bit of a discussion as to whether I was going to get any "sleepy" medication, since I had had a banana a few hours before and they usually want people to have nothing to eat or drink six hours beforehand. Luckily they decided it was okay to give me something. I was awake for the whole thing but definitely felt better being a little woozy rather than wide awake. After the burn of the numbing medication the procedure was relatively painless. . . that is until they actually embolized the thing. Right after they finished the procedure I started feeling this awful burning sensation in my abdomen and had a huge wave of nausea.

ICU, Do UC Me?

Afterwards they took me to the Intensive Care Unit (never stayed there before), where you'd think things would be calmer than other places. No such luck. First, I was in intense pain. They gave me a PCA (Patient-Controlled Analgesia) button which allows you to inject yourself with pain medication up to every 15 minutes. My PCA had hydromorphone, which is supposed to be 10x stronger than morphine. In addition, I was allowed to get Fentinol, but really it was only the Fentinol that seemed to help, and that would wear off after 10 minutes or so. Plus they could only give me 100-mg an hour, and it took about that much to really impact the pain at all. So basically I was getting about 10 minutes of real relief every hour.

I guess one of the benefits of the ICU is that you get one nurse per two people, so you have a lot of attention. The problem is that there are four beds to a room, and although I was somewhat of an anomaly there (I think they only put me there because of my medical history and because they wanted to keep close track to make sure the bleeding was stopped), the rest of the patients were not. One of the the four of us was totally quiet, so no issues there. Or at least, I didn't hear anything from him. One of the patients was pretty quiet, but not responsive, so the nurses had to literally yell out instructions to him over and over again throughout the night. Finally, my neighbor had become delirious with pain medication and had started refusing to take medication, wouldn't stay motionless for his bed-side X-ray, and was generally becoming a huge challenge for the nursing team. In any case, that night was a total disaster from a pain and quiet standpoint. I have to say I'm impressed that these nurses put up with this stuff on a daily basis.

Back on F-ground again

Luckily, they moved me the next day to good old F-ground (oncology ward), where apparently all the cancer patients have gotten better or something, because there's nobody here. I'm told it's been a slow week - there are tons of empty beds and they've even been sending nurses home because they're not needed. I have a pretty nice room with bed by the window and no roommate. The room faces a courtyard and the roof of the opposing building appears to be where the helicopter pad for the hospital is. The helicopters do a lot of business on Saturdays, it seems.

Yesterday I was still in a good amount of pain and pretty drugged up. I had a bad fever through the night and was feeling pretty crappy this morning. The oncology team decided to put me on antibiotics just in case, but the IR doc came by and helped explain what was going on. He said it was very common after these embolization procedures to develop post-embolization syndrome, which apparently consisted of fevers and nausea. He said it was probably not due to an infection, but that it was a good idea to take something to reduce the fever. He suggested taking ibuprofen rather than tylenol, since tylenol can have some liver toxicity (which is usually a problem for people getting these procedures). Apparently this was the best idea ever, since after I took an ibuprofen this afternoon my fever broke and my pain started subsiding. Could be coincidence, but what the hey, we'll take it. In any case I'm feeling a lot more awake now than I was before, too.

I was scheduled to have an appointment with my medical oncologist tomorrow, but I guess that may not happen exactly as planned. She's leaving for sabbatical on Tuesday, though, so she said she'd definitely come to see me if I were still in the hospital. I'm a little apprehensive to see her leave, but hopefully the new doctor I'll be seeing lives up to her good reputation.

Hopefully my next post will be out of the hospital and will have more answers about this liver business.

Breathe in, breathe out

2009-08-24T00:34:00.000-07:00

(8/23/09)
"I went to the hospital and all I got was this lousy chest tube"

Hi everyone. I'm Alex's left lung. Alex didn't feel like writing a post, so he asked me to fill in for him. Strange request, since I'm the one who's all cut up, not him, but whatever. I guess he has reruns of Firefly to watch on Hulu or something. It's been an eventful few days, to say the least. The surgery on Wednesday went fine but recovery has been much slower than last time. This time they took out more chunks, though, and since I've been damaged a little by radiation and chemotherapy, I guess I'm not my usual springy self these days. Well, here's a quick rundown of what's been happening (times are approximate - I don't have a watch):

Wednesday (8/19/09) 11:40am - Showed up and checked in for surgery, which was nominally scheduled for 1:40pm

3:15pm - Finally called in from the pre-op waiting area. Strangely enough an old friend was assigned as the anesthesiology resident on the case, so that's nice though a little bizarre. He traveled with us through Africa in 2003 and was already a PhD in Materials Science at that point with a year of med school under his belt. He asks Alex if he wants someone else to be assigned to the case, but we both think he'll be fine for the job.

5pm - Wake up with pains all over me where they took chunks out and stapled me up. Alex says his throat was numb from the bronchoscope and he was having trouble swallowing for a few minutes. A chest tube is causing the bulk of the pain - it's this pretty thick tube that sucks out the extra fluid, blood, and air from the surgery. The end of the tube is placed between me and the chest wall, and the other end is hooked up to suction.

7pm - Transported to our room. We are delayed because they can't find a PCA device, which delivers morphine directly through your IV when you push the magic glowing green button, or so I'm told by The Fingers and Eyes. Quite a bit of nausea but that will wear off after a day or two. Besides, that's mostly Stomach's problem. . .

Thursday (8/20/09) 8am - In the morning they come and take an X-ray. Apparently there's a little bit of air between me and the chest wall (the pleural space), but they think they can take the chest tube out and the body will reabsorb the air. The chest tube is connected to this container that has some water in it, and another tube connects the container to the vacuum pump in the wall. They shut off the suction and put me on "water seal", which just means the chest tube is connected to the container, which has a bit of water in it.

9am - Another chest X-ray. Luckily they come in and do it in your room so you don't have to go anywhere.

10am - The surgery team comes in to take out the chest tube. They put on a bandage that's supposed to be airtight. I say "supposed to" because of course, it isn't. But more on that later.

10:30am - For some reason we have to be transported down to the radiology wing for another X-ray: what should be the final you-can-go-home verification.

11:00am - Doctors return. The air space is getting bigger - i.e. I'm collapsing. The docs take a look at the dressing, which (surprise!) looks like it may have leaked due to some fluid getting pushed out. So, instead of going home, we get another chest tube inserted through another hole - luckily this one is a little smaller than the last one, so it's supposedly less painful. The procedure is not pleasant. The Eyes said it was because it was all happening in a place they couldn't see, but Chest said it just plain hurt. Tomorrow we'll see how things look.

Friday (8/21/09)
Morning X-ray. I look expanded again and there seem to be no air leaks, so they take me off suction. Later Alex coughs a few times and his heart rate jumps up to the 140s (it had been in the low 100s). Another X-ray reveals I've almost fully collapsed again. Guess what? Back on suction to reinflate me. I guess I still have a hole somewhere.

Meanwhile Alex is supposed to be walking around and getting some activity in, but the suction tube is connected to the wall, so he can't really go very far. The "portable" suction device they bring is not battery powered, so that's not terribly useful. The interim solution is to extend the tubing a bit, which allows us to walk about 10 feet out of the room. It's like being on a leash, or so I'm told. Well the leash is actually a series of tubes in this case, which I'm told is like the internet.

Saturday (8/22/09)
Morning X-ray again. Looks good but there's still a small air leak. They can tell by looking at the water container and seeing if there are bubbles when Alex coughs. There are.

In the afternoon, Alex gets up to pee in the portable urinal (plastic container) and the heart monitor goes crazy and starts beeping again. Nurses rush in and everyone wants to know if he's okay (As I understand it this is a slightly embarrassing situation to be in) . It's not until Alex looks over and sees the end of the tube on the bed that they realize the suction has been disconnected. Of course I could have told them that from the gush of air I felt, but no one consulted me. I'm collapsed again but they quickly reattach the tube and suction. Apparently one of the pieces that screws the tube on came loose and detached.

Sunday (8/23/09)
Same story as yesterday. X-ray looks good but there's still an air leak. They'll look again tomorrow. Bowel starts finally doing some work and pushing stuff through, though we all have to spend a good amount of time in the bathroom waiting for him to get something done. I guess he's fighting the side effects of the pain meds, but man, it's kind of like he just went to sleep for four days. Anyhow as Bowel finishes and we're getting up, the heart monitor goes crazy again. Nurse comes in and checks the dressing and such, but everything looks okay. I guess some bodily functions are just too exciting for all of us right now. Heart seems especially agitated. He's been beating in the 100s even when we're all just sitting around. He seems to be calming down though.

We'll see what tomorrow holds. I'm trying to heal as quickly as I can, but I guess the chemo and radiation hurt me more than I thought.

Hope you're all doing well. This is Alex's left lung, signing out.

Keep riding that roller coaster

2009-08-18T00:32:00.000-07:00

(8/17/09)

Well, I'm hoping I don't get stuck on a stopped ride like these people, but I'd also like to get off of this thing at some point. My roller coaster appears to have more downs than ups of late, which makes for a strange ride.

The short story is, I'll be getting more surgery on Wednesday (August 19th) to see what's been wrong with my lungs. Although my most recent PET-CT was clear except for the two nodules that were there before and seemed to be going away, I've been having respiratory symptoms that have gotten progressively worse over the past month or so. It started with a slight chest tightness when I would inhale deeply. I mentioned this to my doctor in mid-July but no one thought much of it, including me. After Lake Shasta (see last post) I felt more tightness and pretty serious fatigue and went to the on-call doctor. She said my lungs sounded fine and didn't have any of the characteristic wheezing or other issues that come with respiratory infections. Also, my red cell counts were fine, so I wasn't dangerously anemic (which can make you feel fatigued, but so can chemo). The following week I was starting to cough a bit with deep inhalations, and I went to see the radiation oncologist resident (my rad onc was out of town) to see if there was any connection to the lung radiation I've had. She said it probably wasn't due to the radiation, and a chest X-ray didn't show anything unusual.

Meanwhile the tightness and coughing were getting worse and I went to see my cardiologist, to see if there were any heart issues that could be causing it. I had a cardiac ultrasound that was normal, and the bloodwork didn't show anything substantial. I would wake up in the morning with my chest feeling pretty tight, and I started having to have 10-15 minute hacking fits every day (dry cough) just to feel like I could breathe somewhat normally. I went back to my cardiologist, who said it'd be good to treat this as if it were an infection but also that I should get a chest CT to make sure it wasn't something more serious (he seemed to think it could be a blood clot in my lungs). In any case, he gave me a steroid inhaler and some antibiotics.

I had the CT scan last Tuesday and that's when they saw abnormal gunk in my left lung, though no blood clots. I say gunk because it's hard to know what it is. There's a diffuse something there that has what they call a "ground-glass" appearance. Apparently it's not a radiation side effect like radiation pneumonitis (something that can happen after lung radiation), and it doesn't look like normal tumor either. It has the appearance of an infection of some sort, but my oncologist won't say anything definitively about it until we take a chunk out and find out what it is. Hence, more surgery. A needle biopsy might be possible, but there's no guarantee they can get enough tissue to get a good diagnosis.

So, I'm getting another VATS (Video-Assisted Thoracic Surgery). It'll be pretty much the same procedure as the previous lung surgery I had in February, where they inserted tools through a couple of small incisions in my side and cut out the tumor spot that was there (I think they'll even use the same incision points). This time, the surgeon will take out a couple pieces of the "ground-glass" stuff, as well as the two nodules that were there before (the ones we zapped with radiation), and a couple of spots that might be new nodules. Oh, that was the other bit of fun news the CT showed - the possibility of new nodules. Guh. Hopefully they're just part of "the process", which is what my oncologist calls this ground-glass stuff, and hopefully "the process" is not something too serious.

Chemo-coaster

Meanwhile, I'm supposed to start this new regimen of chemo any day now. Originally it was three drugs - Irinotecan, Temodar, and Vincristine - but my doctor decided to drop the Vincristine, because I've been having some neurological issues (i.e. dizziness) with the last regimen (Navelbine and Cytoxan). She didn't want to aggravate them with more neuro-toxic Vincristine. Actually it's the Irinotecan that's supposed to be the nasty stuff, though it's shown to be a good drug against rhabdo. When I finally get to doing this, I'll be taking it once a day for two weeks (1-2 hour infusion), with one week off to end the cycle. If I tolerate it well, we'll do at least two cycles and maybe alternate with the Navelbine/Cytoxan I was on before. The main side effect of Irinotecan is diarrhea, so I'll be taking a bunch of stuff to try and fight that off, including a daily antibiotic and a 3-times-a-day dose of activated charcoal (Janet was quick to point out, "I put that in my fish tank."). The charcoal should help keep my GI tract nice and filtered so the Irinotecan doesn't upset things too much. That's the theory, anyway.

I've been off of any kind of chemo for a couple weeks now, and I'm starting to feel a little antsy about it. Hopefully we'll clear up this lung thing and get back on track with chemo soon. It looks like the way things are going, I'll still be getting treatment at least through December. On top of all this, my medical oncologist is going on sabbatical at the end of the month. Supposedly the doctor covering her patients is really good, but it's pretty crappy timing.

Anyhow, wish me luck on the surgery!

July July July

2009-07-26T18:45:00.000-07:00

(7/26/09)

Every so often I remember that The Onion is available to entertain me, and it's like opening a comedy Christmas present any time I'm in the mood for something funny. The writers have just my kind of humor, but in the most irreverent and (often) offensive way. For instance, did you all know I'm good for your health? The print version is quite good these days, as they have a lot of China articles (since the paper has reportedly been sold to a Chinese conglomerate). You should go ahead and take a look (after you read my post, of course. But after all, if you're reading this, you must have some time on your hands, eh?).

Anyhow, so let's see what's happened this month. . .

Cycle delay
Last time I posted my counts were too low for me to get treated. I saw my doctor again the following week (Wed, 7/8/09), and we decided that even though my counts were up a bit and treatable, we would delay a little longer and instead of finishing cycle 2, move onto cycle 3 the following Monday. I'm not quite sure why we did this, but it did make some sense at the time. I think we decided to let my body recover a bit more before taking on another full cycle. So I ended up having two weeks off from chemo, during which I was still having weird dizziness and lightheadedness issues. The brain MRI I had in June was clear, so I started thinking maybe it was due to something else. . . luckily nothing else serious has cropped up. I saw a neuro-oncologist (7/17/09), who helped to rule out any weird neurological issues - he thinks the likely cause of the dizziness is just a rare side effect from the navelbine. Yay. It's like everytime I roll the dice I get better at coming up with statistical improbabilities. I hope that'll keep happening for me for the good outcomes, too.

Next Steps
On the 8th we also discussed next steps. Hopefully if I can get through the rest of this cycle without my counts tanking too much, we're going to switch to another set of drugs: Irinotecan, Temodar, and Vincristine. The idea is to catch the cancer off-guard and not allow it to build up resistance to the drugs I'm taking now.

Big News
I had a PET-CT (7/16/09) scan to give us a baseline for the upcoming treatment plan. A PET-CT uses a radioactive tracer that runs through the entire body. Any places that have higher sugar uptake than normal tissue (like tumors) tend to light up brightly on the scan. They overlay the PET with CT so they can see the anatomical features. My latest scan was mostly clear, aside from the two lung nodules. On the scan they had shrunk, and the radiologist couldn't tell if they were actually still active (as tumors) or if they were just inflamed from the radiation (inflammation can also light up on PET, which is why they typically won't do it directly after you've had surgery). So I'm calling this one clear, with those little nodules dying a slow, painful death.

Lake Shasta
The magnanamous Mike Ying organized a great trip to Lake Shasta last weekend, and though I'm feeling pretty exhausted this week, I'm really glad I went. We had 16 people on a rented houseboat and speed boat, and we spent the weekend lounging, swimming, wakeboarding/waterskiing/tubing, and having an all-around relaxing time. There was a ton of beer (I stuck to the EANABS*) and lots of tasty food. I tried waterskiing for the first time and through Kelly's skillful instruction was able to stand up the first time, but not for very long. It was kind of down-hill after that first try, but I'm eager to try again. I guess we always did the snow version when I was growing up, so I never really got into the water sports. There are a couple of photos below, but you can check out the rest of the pics here (Saturday) and here (Sunday).

I think some combination of the weekend fun and cumulative chemo has tired me out, though, because I was super super fatigued this week. It really sucks feeling that tired - one day I slept in pretty late, took two naps, and was still tired. Maybe I'm just bored ("I once thought I had mono for an entire year, but it turned out I was just really bored." - Name that movie, anyone?) Hopefully this weekend of sitting around doing nothing has helped me charge up for the week :P

* EANABS = Equally Attractive Non-Alcoholic Beverages

Morning glass on the lake.

Steph and I try our hand at staying on some inner tubes.

Counts down, hair OOC

2009-07-02T12:47:00.000-07:00

(7/2/09)

Aside: By the way, I've added a handy feature over to the right --->
It lets you get email versions of my posts, so you'll be sure to get the latest and greatest updates. Don't worry, I'll only sell your email address if I can get at least $2 for it.

Brief update today. My counts were too low on Monday to get treated. Boo. I'll see my doc again next week to see if they've come up again, but I've had a sore throat for the past couple days, which will probably not help matters much. Otherwise I'm still a little lightheaded now and then, but it seems to be getting progressively better. I've been having some paranoid thoughts about little aches and pains I keep feeling, but on the whole I'm trying to ignore those - after all, my body is doing its normal aging thing, too, so random aches and pains are normal, right?

Anyhow, my hair was starting to get out of control, so I finally got it cut. Below are some of shots of the "before" situation. These shots don't quite do it justice, but trust me, it was getting out of hand. You'll just have to wait in giddy anticipation (or come see me in person) to see the "after" look. . .

June 7, 2009 - I've never had curly hair before. It's kind of cool, but also very unwieldy, as you'll see in the shots below.

June 22, 2009 - By this time, the hair was really getting out of control, especially the stuff growing out of my sideburns - on one side it would grow straight down, but on the other side it would curl out. And back. And all over the place. Cuh-razy.

Turns out its kind of hard to take pictures of the back and top of your head by yourself. But the thing I really noticed was the swirl of hair around what appears to be a bald spot. . . Well, just another sign that I'm still alive though getting older. . .

Ma' Brain

2009-06-26T11:34:00.000-07:00

(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

2009-06-25T02:13:00.000-07:00

(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

2009-06-18T15:24:00.000-07:00

(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)

2009-05-13T19:10:00.000-07:00

(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!!!

2009-05-07T11:19:00.000-07:00

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

2009-04-21T18:18:00.000-07:00

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

2009-03-20T01:36:00.000-07:00

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. . .

2009-02-19T15:26:00.001-08:00

(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!

2009-02-03T18:10:00.000-08:00

(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

2009-01-25T16:41:00.000-08:00

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!!!

2008-12-30T11:49:00.000-08:00

(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

2008-12-18T22:12:00.000-08:00

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

2008-11-17T17:17:00.000-08:00

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

2008-11-11T21:17:00.000-08:00

(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

Phillies win!

2008-10-29T22:07:00.000-07:00

(10/28/08)

Well, I guess in all honesty I'm a fair weather fan, but hey, I went to see one game when I was in Philadelphia, so that gives me some kind of street cred, right? I know who Mike Schmidt is - well, not what position he played, but . . . that's what Wikipedia's for, right? So anyhow, yay Phillies!! (Let's just ignore the fact that the Rays made huge mistakes in the 9th of game 3 and the first inning of game 6, which basically cost them the series).

Cycle 14

Okay, so down to the nitty gritty. Today was Day 2 of cycle 14 of 17. Nothing too new, although I had to make sure I got the correct premeds yesterday (they forgot to give me Aloxi, which is like Zofran but lasts over 3-5 days). Today I was just really tired and kind of napped on and off throughout the day. I did get a chance to catch up with a friend who I met when I first started this chemo last year. He has ewing's sarcoma and had just finished this chemo protocol when I started. Unfortunately he had a local recurrence recently, but he had surgery and will do a stem cell transplant after this new chemo cycle he's on. Hopefully that'll clear things up. Stay strong, Steve!

It's so difficult to have so much uncertainty about this whole ordeal. For me, there's no real data on this kind of cancer, especially not in someone my age, and it's similar for my friend. I guess it's good to know there's recourse after the first round, but of course you'd rather not have to go through it. For now, I guess it'll have to be good enough to get through this first (and hopefully last) bit. Only three more cycles to go!

Don't you know about the bird?

2008-10-11T11:21:00.000-07:00

(10/11/08)

I watched the Family Guy episode, "I Dream of Jesus", last night and laughed my butt off. I thought the first half was awesome - second half wasn't that great, but for some reason I thought Peter's "Surfin' Bird" dance was hilarious. I could see some people thinking it's just annoying, but I would humbly disagree. You can see it on Hulu if you missed it. Actually, the spoof of Dane Cook is pretty good, too (anyone actually think that guy is funny? If so, can you explain why?).

Anyhow, I finished number 13 on Monday (woohoo!). Just four more to go, but right now it's looking like I'll turn 30 before it's done. Not sure what's different, but this one seemed to really knock me down. Last time I had a one-day VC (Vincristine, Cyclophosphamide) cycle, I went off to King's Canyon that evening and did a 9-mile (though relatively flat) hike with everyone the next day. This time I was just really tired for the next few days, and even going out shopping for random things yesterday wore me out. I guess it could be psychological, or the cumulative effects of the chemo, or who knows? One definite difference is that this time we decided to delay the start of my 14 neupogen shots until today (usually I start them a day after treatment is done). That way, they'll finish closer to the time of my next treatment, which hopefully will keep me on track schedule-wise. Neupogen is supposed to boost my white cells mostly, which usually doesn't seem to correlate with my energy level, though, so I'm not sure why this round hit me so hard. I guess I could also be a little anemic (low red cells). That has definitely made me fatigued in the past.

Sometimes the scientist in me wants to get blood tests every day so I can track this sort of thing and find out what affects me when and how, but I guess then I'd have to get blood tests every day, and that would be kind of a drag. I guess in lieu of that I'll have to keep to the Wheel of Speculation (that's the wheel in my head that's like the Wheel of Fortune wheel except the money values are replaced by reasons for my low energy - you get the idea).

33 minutes

2008-09-19T15:49:00.000-07:00

Day 4/4, Cycle 12/17
(9/19/08)

There's an episode of the new Battlestar Galactica show (I think it's the first one after the series intro) where the Cylons keep showing up to attack the human fleet every 33 minutes. As a result, everyone's all at their wits' ends with lack of sleep and exhaustion. I guess it's not quite the same, but with all the chemo and hydration they give me while I'm here, it feels like I'm up to the bathroom every 33 minutes, so even if I try to sleep through the whole day, it doesn't quite work out that way. I usually get some sleep in the morning, but then I'm mostly awake in the afternoon, which seems to drag on forever and ever. It's 3:55pm and I've got 3.5 more hours to go.

chugga chugga chugga chugga. . . . woo woo!

By the way, my friend's team is one of the top 25 finalists in the American Express Members' project. If you've got an AMEX card, I urge you to vote (pref for their project, Embrace - $25 Infant Incubator, but if you find another cause more worthy feel free to vote for that). Here's the link and a video from Embrace:

Register to Vote!

2008-09-13T12:07:00.000-07:00

(9/13/08)

Anyone else ready for this election to be over? Man, I can't even watch the news anymore. I guess the debates will be interesting. Anyway, if you're reading this and you're not registered to vote, go here now! Go ahead, I'll wait. . .

. . .
(doo doo dum dee dum)
. . .

Done? Cool. Well, I'm finished with my neupogen shots for the week (see previous post), and we'll see if I can go in for treatment after my appointment on Monday. I did wake up with some sores on my tongue today, but hopefully that doesn't mean anything other than my room is too dry. It's weird to be getting them now, though. Sometimes I think my body has some sort of weird Pavlovian response such that it starts to expect treatment before I'm even getting it. My energy level is better than it was earlier in the week, though, so that's a good sign, I think.

One other bump that we cleared this week. . . my bladder is A-OK. My doc said that a couple weeks ago when I had my cystoscopy, the urine sample they sent out looked "suspicious". The pathologists said I should be checked for signs of bladder cancer. The pathologists saw abnormal looking cells, but they also didn't know I had gotten radiation in that area and was undergoing chemo. My surgeon said the "suspicious" cells were likely due to radiation and chemo damage to my bladder and were nothing to worry about, but my oncologist wanted to do another sample just to check. So I did that on Monday and the results came back negative yesterday. They even went back and checked the old sample to make sure, and there was no sign of malignancy. I wasn't that worried about it, but my mom was, so anything that makes mom happy is definitely a good thing.

Some days I think back to when I had surgery, and though there are lingering long-term consequences, it's such a relief that I still have a fully functioning bladder and urinary tract. We have to hold on to things that we can be thankful for, and try to let go of pain and depressing thoughts as quickly as possible. But I guess both are easier said than done.

Tired tired tired

2008-09-09T10:53:00.000-07:00

(9/9/08)

Huh, I guess a year from now this day will have some significance (9/9/09). Any cultures where 9 is a lucky number? Well, as the title says, I've been kind of tired the past few days, more so than usual, unfortunately. I'm not really sure why, since my red cells are fine, but I guess it's just part of the process. Maybe it's because I haven't really done any exercise in a week or so. I've been trying to sleep more, but that just makes me feel more tired. Ugh.

Anyhow, I've been delayed again. . . Last week I had a doctor's appointment on Wednesday and was supposed to get treated on Friday, but my neutrophils were just barely too low (1.4 instead of 1.5, which is the cutoff). I took a few days to rest, but yesterday they were even lower (.98). On the one hand it makes you question the accuracy of the tests - is 1.4 really that much different from 1.5? How much do your absolute neutrophils fluctuate in a day? On the other hand, I guess they have a cutoff for a reason. Normally when I have been delayed, my doctor has wanted to wait to have my counts come back up on their own. I guess she's seen so many people get delayed lately that she's now recommending I take some more neupogen to help boost my counts back up. So, five more days of injections this week, and hopefully I'll be able to go for treatment next week. She's also talked to the doctors doing the rhabdo clinical trial and has decided to reduce my dose a little more this round; I'm already reduced to 80% but she's going to bump it down to 75%. Apparently that's as low as the rhabdo docs want to go, but hopefully it'll help me bounce back a little more quickly. I have to keep reminding myself that the effects of chemo are cumulative, and my doc is always quick to tell me I'm not alone in these delays. Ugh, it's just the waiting that's so awful.

Well on a happier note, here are some pics from my trip to NYC:

A quiet moment in St. Patrick's Cathedral

Mom at the MOMA. Unfortunately it was free admission that day, so it was packed.

Gathering for Anthony's very low-key but very sweet wedding ceremony at Brooklyn Bridge Park.

Anthony and Nolwenn.

The high school gang at the after-party.

Me, Jeff, and Anthony (middle school buddies) at the climbing wall.

Holly, me, and Jess (freshman dorm friends) at the Shake Shack in Madison Square Park.

Me and Manasi in Midtown.

Back from NY

2008-08-29T16:50:00.000-07:00

(8/29/08)

Boy I feel unmotivated. If you took the normal unmotivated feeling you sometimes get while working on a PhD, factor in the "I just got back from vacation" multiplier, and quadruple that, you might get to about how unmotivated I feel. Well, okay, so maybe that's an exaggeration (triple?), but it does get to be a real drag to keep starting and stopping on things. Progress on the PhD has been really slow going. I'm trying to edit my third publication so I can submit it to a journal. Once that's done, I think I'll be in good shape to defend my thesis. Actually, I really could do that in opposite order. In our department you really don't need to have anything written to defend your thesis. Strange I know, but as a result it's sort of difficult to know when you're ready to defend. All my various advisors seem to be in support of me defending and I was going to do it last year around this time, so . . . there's really nothing stopping me, but now I feel a little gun shy. As my friend JP rightly pointed out, I just need to stop being a wuss about it and get it done.

Still, it's a little daunting. Life is a constant disruption these days. This one (going to NY) was a really good disruption, but having a constant start and stop does make it tough to get into a rhythm. Maybe I should try a bit harder to at least do a little bit of work each day. If you have some velocity, no matter how small, you'll eventually get there. If you have zero velocity, there's no way you'll ever get anywhere.

The week in NY was super fun, but kind of exhausting - saw a bunch of friends from high school and beyond, and I basically spent the week running around the city with various combinations of people. This was all great, and I managed to survive, but I think I'm paying for it a bit now. It was the same when I came back from Hawaii - I just feel pretty exhausted and tired. I'll probably try and sleep a lot this weekend, so I can rest up for treatment next week (appointment on Wed, treatment on Fri).

I'll post some NY pics soon, but for now, have a great Labor Day weekend! (Oh, and happy Judgment Day - actually the 11 year anniversary of what should have been Judgment Day. Good thing they melted Arnold in that vat of molten metal! But oh, wait, according to the third movie, all that just postponed judgement day. . . Oh, so confusing. . . ). Oh yeah, and Happy Birthday Dave!

Cystoscopy, schmistoscopy

2008-08-14T11:00:00.000-07:00

Update, Schmupdate
(8/15/08)

Well, there's never a smooth ride in this business I guess. Things were slightly bumpy this week, although the issue seems to be resolved. I had a couple of isolated incidents of passing blood clots in my urine in the past couple of weeks. It was weird - it happened on separate days, once about two weeks ago, once last week, and once early this week. But since the symptoms seemed similar to what happened when all of this started, I sounded a bit of an alarm with my doctor, and in true fashion she was right on top of things. She scheduled me for an appointment on Monday, I had an MRI on Tuesday, another appointment on Wednesday (this one was already scheduled as a regular check-in before chemo), and a cystoscopy yesterday.

So, you might be wondering what a cystoscopy is. Well, it's a fun little procedure where they take a cystoscope (basically a long tube with a camera at the end), push it up the urethra, and look inside the bladder. Luckily they squirt in some lidocaine gel first to numb things up a bit, so it didn't hurt too much. I was pretty apprehensive going in, partly because I was worried about what they would find, but also because it's been so long since I've had to be poked and prodded that I guess the prospect was a little daunting. The procedure itself was actually pretty quick and only took a few minutes. The only painful parts were the shot of antibiotics I got at the beginning (to prevent infection) and the couple of minutes that the scope was actually in my bladder. The medically-inclined engineer in me was pretty fascinated at being able to see my own bladder on the TV screen. Luckily everything was pretty clear - there was a small calcification that my urologic oncologist (the same doc who did my prostate surgery) said was probably the cause of the bleeding but was nothing to worry about. In fact he knocked it off with the scope by accident and it immediately came out in my urine afterwards. Apparently cells in the bladder can get irritated by chemo/radiation, and when they die off they act as a sort of seed around which calcifications can form.

Anyhow, so that's a load off. My oncologist wanted to make sure the cystoscopy was clear before I went in for chemo, and so here I am, back in the ITA. I'm getting VC (vincristine, cyclophosphamide) this time around, and it's my first time without adriamycin/doxorubicin. Luckily that means I only need to be here for one day, but it still will be the whole day, since I need to get mesna (bladder protectant) at 4 hours and 8 hours after the cyclophosphamide. Ah well, it should be no problem compared to 4 days, and I'm hoping the side effects will be minimal compared to the other chemo drugs. I was watching the olympics for a little bit, but then Martha Stewart came on and I promptly changed the channel.

Well that's it for now. Hope you're all doing well out there and making the most of the waning summer months!

Feelin' Fine

2008-08-05T10:36:00.000-07:00

(08/05/08)

Just three days til the craziness that is going to be the Olympics. Man, I hope China doesn't implode. I'm not really in support of protesting/boycotting the Olympics, but I kinda hope that China will take something positive away from all the criticism it's been getting and is likely to get during the events. Anyhow...

The last round finished up without too much fanfare - I definitely handled it better after that first day, but four days in the hospital is draining, even with going home at night. I'm getting a pretty good read on my own body's reaction to the chemo drugs though. The cycle is pretty consistent - after the chemo is done, I get about two days of minor nausea and just uncomfortableness. After that my skin gets kind of achy and sensitive all over for a couple days, and my tongue and mouth get minor sores (my tongue gets white and splotchy - it looks worse than it feels though). Then after about five days those things go away and I'm back to feeling relatively normal. Not too bad in the grand scheme I guess. After reading Lance Armstrong's book, I was expecting to be doubled over in the fetal position puking my guts out most of the time during treatment. I thought I would lose tons of weight and just feel super weak. Luckily none of that has really happened. Some days I even forget that anything is wrong. Not for the whole day, mind you, but I get these brief moments of time when my mind is occupied with something and I'm not constantly thinking about all this crappiness (heh, is that how you spell crappiness? happy -> crappy, so happiness -> crappiness?).

In any case, I've been feeling pretty good for the past week or so, both physically and mentally. My climbing has been going in this sawtooth pattern where it gets better and better then takes a dive after a cycle of chemo. Still, I've been able to go more frequently and climb for longer than when I first started during treatment, so I guess that's a good sign. Somehow, I've also been in a consistently good mood for the past week or so. Pre-last cycle I was in a consistently bad mood - maybe it was due to all the delays. I know what people say about a positive attitude, but sometimes you just can't help feeling crappy. I guess you just have to let yourself feel what you're going to feel and try to come out of it after a time. It certainly helps you appreciate the days when you feel good.

Still have seven more cycles to go. . . At this rate it'll take me through December - given that there will probably be more delays, I guess I'll likely turn 30 (on the 24th) before this is all over. Even so, I like to think that the chemo and radiation have already done their job in mopping up all the cancer cells, and any further treatment is just gravy. So pour some more gravy on me!

Ahh. . . there you are!

2008-07-25T13:35:00.000-07:00

(7/25/08)

"There you are!"
"Do I know you?"
"No, but that's where you are, you're there!"
(12 points if you name this movie)

Well, you're there, and I'm here, here being the Stanford Cancer Center, in the infusion treatment area (ITA) to be specific, in Treatment Area C2 to be even more specific. And that all means. . . yup! My counts were good enough for treatment! Yay! My neutrophils were at 1.7 two days ago, so I was greenlit to go in yesterday and for the next four days (til Sunday). Again, it's sort of a mixed bag of celebration I suppose, since I do get to/have to spend the next four days sitting here for 10 hrs a day, but it's another step towards completion of this long haul. It's not so bad - I usually get my own room since I'm here all day, and the place is somehow more cheerful than the normal hospital. When you stay inpatient, the people there are usually all really sick: a lot of them are bedridden or barely mobile. Plus, as I think I've said before, it's just kind of aweful being there at night - it's noisy and uncomfortable and boring and lonely, and you wake up to a totally unappetizing breakfast.

Here in the ITA, some people are just here a couple hours, others the full day like me, but almost everyone walks in and walks out. There are big windows and plenty of daylight. The nurses are all very friendly and they seem a bit less stressed out than the inpatient folks.

Still, this round seems to be hitting me a little harder than the previous ones have. I felt pretty nauseated going home yesterday and I haven't been able to eat much. Maybe it's the fact that I had a bit of a break and was feeling pretty good, so the contrast is that much greater. I dunno.
Just gotta roll with it I guess, and take my meds on time.

White blood cells, where are you?

2008-07-16T13:30:00.000-07:00

The search continues... (7/16/08)

Well, I felt a ton better after the blood transfusion last week, but apparently my white cells are still not cooperating. I went in for my appointment on Monday, and my absolute neutrophils were even lower than last week (0.68, down from 1.3). The baseline for treatment is 1.5, so something seems screwy. The current theory is that the cycle of neupogen maybe to blame. After each round of treatment I've been doing 14 days of neupogen shots to help stimulate the bone marrow to produce more white blood cells. The problem is that neupogen causes the white cells to shoot up in number, and so ideally we should wait until they come back down to a natural level before getting treatment. My doctor likes to use the analogy of factories. We've got bone marrow factories that produce red and white cells. Radiation and chemo tend to shut down those factories. The neupogen is supposed to stimulate the factories to produce, but it does so at an accelerated rate. I guess it's like bringing in a ton of extra workers to get the factory up and running again. Slowly while the extra workers are there, the normal workers get back up to speed. So the factories overproduce at first, and when the neupogen wears off, the factories come back down to their "normal" production level (not really normal, but normal enough to get treated with the next round of chemo!). The problem is that if you hit the factories with more chemo while they're up at their overproduction rate, you might be doing so before the natural level has come back up. You basically get rid of all the extra workers while the normal workers are not quite up to capacity yet. Because of the timing of my previous neupogen shots, it may have been that I was getting treatment during these artificially high production times, and the culmulative effect of overstressing the system ends up being that the white cell counts come way down, which ultimately means delays in treatment. This would explain why my previous few cycles have gone relatively smoothly in terms of timing, but it seems my body is now trying to play catch up.

In any case, we'll go in again next Wednesday to see if things have improved. It's super frustrating, but it's also very typical for this type of chemo regimen. Every time this happens, we ask, "Is there anything I can do differently?". But the reality is that it's the chemo and residual effects from radiation at work, and so no amount of eating differently or resting more or exercising more will really change things. Basically, there's nothing I can do, and that's the worst part. You just have to wait it out, and that makes you feel so powerless. The best thing I try and do is just continue with my life as much as possible. It's this strange mix of feelings - part of me is excited by the extra week of freedom, but part of me just wants to get this thing over with. There's also the sinking feeling that more delays mean more chance for the cancer to fight back between rounds. I guess the flip side of that is, well, maybe the chemo and radiation have already done their work killing off the cancer cells, and the rest of this is just gravy. There's no way to know. . . urgh.

In other news, I've been doing better at the climbing wall these past couple of weeks. I think the extra blood really helped a lot. Reminds me of the Simpsons episode where Mr. Burns gets a transfusion of Bart's blood and is suddenly revitalized and energetic. I was able to do a bunch of climbs yesterday without feeling too tired, and I've noticed my energy during the day is back more or less to "normal". And to finish off the post, here are a few notes on what I've been up to:

Reading: The Ecology of Commerce, by Paul Hawken
Listening to: Zero 7, The Decemberists, Sara Bareilles (I know, cheesy poppy, but whatever), Flaming Lips, REM (of course), shuffled songs on my iPod
Playing: Super Mario Galaxy (sooo much fun!!)
Slowly working on: my thesis, slides for my defense
Pondering: some post-thesis work that will combine engineering, social benefit, and international development with education, clean tech, and/or medicine
Trying to get back into: Tai chi
Watching: Flight of the Conchords, So You Think You Can Dance, America's Best Dance Crew, Scrubs

There will be blood. . . eventually

2008-07-08T14:43:00.000-07:00

(7/8/08)

Hmmm. . . well I've been delayed again due to low white cell counts. Yesterday was a fun rigamaroll that had me marching around the cancer center trying to figure out some hospital craziness.

I showed up with my mom at about 9am to get my blood drawn. (Before each appointment I need to get my blood drawn so the doctor can see if my counts are high enough for me to be treated.) A simple thing, right? Not so much. First I went to the blood draw lab, but they didn't have my lab form. I usually get the form after my previous appointment, but I didn't have it this time for some reason. So, I went upstairs to the Infusion Treatment Area (ITA), where they do blood draws and outpatient infusions for people with central lines (either a PICC or a port like I have now). In my mind, since I had the port, I thought it'd be easier to get my blood drawn the old fashioned way (but you have to do this at the lab downstairs). So, instead of telling them I had a port, I told them I didn't have a PICC anymore and I wanted to get the lab form to go downstairs to the normal blood draw lab. I waited for a couple minutes and they told me they didn't have the lab form and to go downstairs to the clinic to get it.

So of course I did that, and another fun surprise awaited: there were no lab instructions because my insurance was listed as terminated as of June 23. What the frak? (BSG reference, anyone?) I got on the phone with the insurance company, and they said there was probably a glitch because Stanford didn't put me on the list of students continuing on for the summer, even though the university had already billed me for summer tuition and insurance. Luckily that was easy enough to fix, but it would take a couple days to get it in the system. Meanwhile, we had to wait around while the receptionist (who is exceedingly nice) called around to try and figure out how to deal with the situation. Finally she said I could just go upstairs to the ITA and they could do the blood draw.

Back up the stairs we went, but there were still problems. There was still nothing in the system. Somehow, though, once I told the guy behind the desk that I did indeed have a port, he said I could just wait there and they would get me in. By this time I had missed my 10am appointment, but since the clinic knew things had gotten a little mixed up, I was still able to see the doctor (they're used to this kind of thing I guess). I got my blood drawn, finally, through my port, and went back downstairs to wait to see the doctor.

We ended up waiting for a while in the examination room, and when the doctor came in the full blood results still weren't ready. Of course, when they were finally ready it turned out I couldn't be treated (absolute neutrophils were at 1.3, and they need to be at 1.5 to be treated). Also, my red cell counts were low, so I needed to show up the next day (today) to get a blood transfusion. This was not a huge surprise, since I've been feeling pretty tired the past couple of weeks. It was about 2pm by the time we got out, a good five hours after arriving.

Today was not a whole lot different. We showed up at the ITA at 8am, and first the nurse had trouble finding my orders. Then, it turned out they had to do a blood type check (i.e. draw more blood), and this would take up to (actually more than) two hours. So we went downstairs to the lobby area, where there are some nice cushy chairs, and I basically took a nap for two hours. Finally at about noon, the nurse called me back, and the blood came and we got started at about 12:30. I'm just finishing the first of two bags now, so two more hours and I'm outta here, probably at about 4:30 or 5pm. . . ah, a full day's work. If anyone was wondering how appointments could end up taking such a long time, wonder no more!

Me and My Port

2008-06-24T12:37:00.000-07:00

(6/24/08)

I figured the last post was so jam packed with stuff that I'd save this last pic for a separate post. Here's what the port looks like under my skin. It's a little creepy to me still, like a little alien or cyborg part or something sitting there. Luckily it doesn't really move around or anything. The double circle is where they stick the two needles in to access it, and the line goes up over my clavicle, so you can see the catheter sticking up through the skin there. So far it's definitely been worth it. No more shower sleeve, no more weekly dressing changes - plus I can swim and climb and do all sorts of things without worrying too much about it. I tend to fiddle with it a lot, kind of like people who have piercings, but usually I don't notice it too much. It does help me feel that much closer to normal.

Me and My Brows

On the flipside, one thing that's been making me feel a little less normal is my loss of eyebrows and lashes. The brows have really thinned out quite a bit, and the lashes have also mostly fallen out. I guess like everyone I'm a little vain, so the ability to pass myself off as some guy who just decided to shave his head was kind of nice. I suppose most people don't really notice, or if they do they certainly don't say anything, but for some reason I always end up wondering what the guy on the street would think. Plus, I think I've started coveting other people's eyebrows. For some reason I find myself staring at them all the time now. It's ridiculous, I know, but I guess I just never noticed eyebrows before. Maybe I can start to make other people feel self-conscious by just continuously staring at their nice thick, bushy brows.

Anyway, my eyelashes coming out doesn't bother me that much from an aesthetic level, but practically I think I've started getting more gunk in my eyes as a result. I guess it turns out they really do serve a purpose, to keep crap out of your eyes. I can't even do the boy scout first aid trick we learned where you pull down your top eyelid over your bottom lid to get the botttom eyelashes to scoop out the gunk in your top lid. How is one supposed to get gunk out of his eye without eyelashes?

Hawaii, Graduation, Round 9, Oh My!!

2008-06-23T13:37:00.000-07:00

(6/23/08)

Hey folks, it's been a long while since I last posted. I guess usually that's a good thing, since it typically means I'm able to do more and more besides sit in front of my computer all day (or do something different while I'm sitting here, like actually write up some of my research). Aaaannnyway, It's been a pretty busy month or so. After the last round of chemo (round 8), I spent a couple days trying to recover in time to go to Hawaii (woohoo!) for my college buddy's wedding. I was a tad worried when I wasn't feeling that great on Sunday, since our flight was on Tuesday, but it all worked out and I was fine (though a little tired) by the time we had to go to the airport. After coming back from Hawaii I had about a week to recover from that (I guess somehow I managed to have energy while there but my body kind of revolted and crashed a bit when I came back) before walking for graduation. Then it was on to round 9, my last in-patient chemo and my last chemo with doxorubicin (adriamycin).

Woo hoo Oa'hu

I was a little concerned about bringing my neupogen shots on the plane, but the security folks weren't really phased by it at all. I brought the syringes in a little soft-sided lunchbox cooler that Serena and I found at Target. I had a note from my doctor all prepared, but didn't even need it. The guy did ask to look inside the cooler, but all he said was, "Is it medical?" I nodded my head and that was good enough. (Funny enough, on the way back the guards were more concerned with the orange and jars of jam that I had in my bag than the needles).

So of course Hawaii was beautiful and awesome. My friend Tom (from high school - wait, actually from MIDDLE school!) surprised us at the airport with a lei greeting and took us to a place in Chinatown for lunch. Tommy decided to up and move to Hawaii for a year or so, since his brother is stationed there right now with the Navy. Tom and his bro live up in Kailua, which has a gorgeously long stretch of beach with very few people on it. Quite the difference from the touristy bustle of Waikiki.

Our hotel in Waikiki was a little rundown but had a kitchenette and fridge (though at first we thought the fridge might not be working - it took a while to cool off), so that was good for storing the neupogen shots and cold drinks. We spent most of the days driving around the island or hanging out with friends who were in town for the wedding. I'll let the pics speak for themselves (err, with the help of captions, that is).

Diamond Head: The lookout from the top of the crater on the east side of the island. It's a short but steep-ish hike to get up there - the top part has a bunch of stairs that were part of the old military lookout tower. I was huffing and puffing but I made it up!

Yay! I'm in Hawaii!

This was a really cool lookout point on the north shore. There's a hole that goes right through that big island rock out there.

Swimming at Waimea Bay on the north shore. I actually got to go in the water, too, thanks to my medi-port, but I didn't get any pics of myself.

Morning stroll at Kailua Beach on the windward side of the island. It's a lot more relaxing and less crowded than Waikiki.

Then of course there was the wedding. Not a bad backdrop, eh?

Me and the groom, Mike. In college people used to get us confused with each other because we both had longer hair and would rollerblade around campus. I told him he has to shave his head to keep the confusion going. . .

A mini-reunion of our freshman dorm. I'm standing next to Michael, my freshman year roommate. There were tons of other Stanford folks there too, which made for lots of fun.

Graduation (6/15/08)
Graduation was actually more fun than I was expecting. The day wasn't too hot, and though the ceremony was its normal bit of tedium, it was fun to see people there having a good time with their friends and family. Plus, it was nice to celebrate something after all that's happened (thanks for the perspective, Blase). For those of you who might be confused, no I haven't actually graduated yet. As a PhD student, if you're close to graduating, they will let you walk during the graduation ceremony (for PhDs, you are "hooded" by your advisor), but you don't actually get your diploma. Here are some pics:

Pre-ceremony photos with the roomies, Charlie and Janet. Charlie is also getting his PhD, but he walked last year.

"Getting hooded" by my undergraduate EE advisor, Bob Dutton. Usually this is done by your PhD advisor, but, well, it's a long story...

I've got another pic like this from when I got my masters. This time, they actually put something in there to tell you you have to give the folder back. Last time, it was just blank. I guess my mom found it amusing and wanted to recreate the picture.

Me, my mom, and my advisors. Prof. Gunter Niemeyer (Mechanical Engineering) is the tall guy on the left (sporting MIT faculty robes) and Dr. David Liang (Cardiovascular Medicine) is the one on the right. Don't ask me how I'm ending up with an EE degree, but it does turn out that both of them have "courtesy" appointments in the EE department.

Round 9 (6/16-6/18/08)

Well, as I said before, this was my last in-patient chemo AND my last chemo with doxorubicin (adriamycin). From here on out, when I get this set it'll just be VC (vincristine, cyclophosfamide), which is just a one day infusion. So the remaining chemo cycles will alternate between four days (ifosfamide, etoposide) and one day every three weeks. Just eight more cycles to go!

Right now I'm feeling pretty good (6/23/08), although I last week I was apparently a little anemic. Not enough to need a blood transfusion, but I think it was enough to make me feel really tired and worn out when I went climbing yesterday (I know, I should probably just be happy to be able to climb at all and not complain about how well I'm climbing, but I guess that's the overachiever in me. Besides, what's the world coming to when you can only do a 5.9 and can't make it all the way up a 5.10a at Planet Granite? Honestly...). It's actually not too bad if I take long rests between climbs, but if I try and do anything that requires a modicum of endurance, my whole body starts to feel like it's about to collapse. It's such a strange feeling, because it's much more sudden than if you were normally just exhausted from exercise, but it also recovers more quickly as well.

Oh, and there's one more bit of good news! My scans were totally clear! I had an MRI of my pelvis and it showed that the nefarious "butt bump" has totally gone away. My chest CT showed that the little lung nodules are still there, but as we thought before, this probably means that they're just from an old infection or something. My doctor thinks it's very unlikely that one tumor would respond to the chemo but the others wouldn't, so basically the nodules should have gone away if they're tumor. Since they didn't, it seems like they're not. Woohoo!

Round 8

2008-05-30T17:20:00.000-07:00

(05/28/08)

Well I'm in the hospital again for another round of IE (Ifosfamide and Etoposide), but this time it's outpatient. This is day two, and I have to say there's something much more pleasant about being able to go home at night. When you do the regimen outpatient, you go to the Infusion Treatment Area (ITA) in the Cancer Center, where you still get to stay there for the whole day (around 8am to 6pm), but 1) things start on time, because the ITA is only open for so long, and 2) you get to go home to sleep, even though you have to wake up early and come in again the next day. Yesterday they gave me a huge dose of Benedryl, supposedly for nausea, but it totally knocked me out for the day. It's kind of nice in a way, like the sleeping time machine effect that you get on long car rides - "Oh, it's going to take so long to get there . . . doze doze doze . . . huh? whuh? We're there? Yippee!". Still, I think it was a little much, so I asked for a smaller dose today. Still zonked me out quite a bit though.

So, besides that, there have been a few updates to Alex in Cancer Treatment-ville. I talked with my doctor last week about when the next scans will be. Most likely we'll do them the week after we come back from Hawaii (June 9). I'll be having a chest CT and a pelvic MRI. The treatment will continue through to the end regardless of how those scans turn out, but hopefully they'll give reassurance that things are working. In other news, I had a medi-port installed on Friday. Here's the type I had put in: http://www.bardaccess.com/port-mri-dual.php. The medi-port is slightly more invasive to put in - it's a minor surgical procedure, but once it's in, it just stays under the skin until the nurses need to access it with a needle. They insert it into the chest just below the clavicle bone, in my case on the right side. It was a little daunting going into surgery again, but I was basically awake the whole time. Unfortunately, though, they had a sheet draped over my head so I couldn't really see what was going on. The worst part, as usual, was when they injected the numbing medication, which ironically stings quite a bit. After that I felt some pressure here and there, a little bit of pain, and the pull of threads as they stitched me up. The site's been pretty sore and a little bruised the past couple of days, but that should go away soon. They actually use what is essentially medical superglue to close the wound. It's nice because I can shower without covering it, and eventually I'll even be able to go swimming with it once the wound heals.

(5/30/08)
As I finish up this post it's now actually day 4 of Round 8 (woohoo!). The predictability of this outpatient treatment is great - I've been out of the clinic pretty reliably around 6pm every day this week. This is in contrast to the inpatient rounds, when I might check in at 10am and not start treatment til 7 or 8 pm. Right now, it's less than an hour to go!

PICC-free and 7 of 17 done!

2008-05-08T14:55:00.000-07:00

(5/8/08)

Note: This post was edited and pics added on May 14, 2008.

Hi all - I know my posts have become less frequent of late, but that's actually a good thing I think. I've been more active in the last couple weeks, and the treatments have been going a bit more smoothly than in the past. I think the side effects of radiation have finally worn off, and the respite after cycle 5 has seemed to do my body some good, even though it was frustrating to be delayed so much.

I finished my 7th cycle yesterday and am feeling in relatively good shape today. This was a VAC cycle, so only two days, but the A for adriomycin usually kicks my butt pretty hard. This time around it seems to have been okay, although the two days was more like three, due to delays in getting the drugs started. We checked in for admission around 1pm, but they didn't hang the chemo until about 9:30pm - something about the pharmacy doing interviews or some BS, then the drugs got sent to the wrong place (same thing happened last time), but finally things got started. Luckily I only have one more cycle of VAC with the A - after that it becomes VC and only an outpatient visit for one day (boy can't wait for that).

The next cycle is an IE, but I'm going to try and do it outpatient. That means getting up butt early every day for four days and sitting in the hospital for 10 hours, but there's an upside: they get things up and running a lot more quickly, since the infusion treatment area (ITA) closes at 5 or 6pm, and I get to go home and sleep in my own bed (and not to mention eat non-hospital food). Plus the ITA has nice big windows and is very well lit.

In other news, I'm PICC-free now! Since I've been more active of late, my doctor said it might be a good idea to get a medi-port installed instead. It requires a minor surgery, but it goes in the chest and is under the skin until they have to access it. That means, no more shower sleeve, no more weekly dressing changes, and I can go swimming and use my arms more freely than I have been able to. I've been planning on going to my friend Mike's wedding in Hawaii in June, so if all goes well, I'll actually be able to participate in some water activities (woohoo!). Not that just being in Hawaii and relaxing (under an umbrella) on the beach wouldn't be nice enough. . . Still, it's always good to have options.

My mom took some pictures when they took the PICC out last night - it was actually completely painless - they just cut the suture and pull it out. I'll post the pics when I get them...

Here are the pics... (BTW, apparently there are only a few people who can actually deal with removing PICCs, despite the fact that it doesn't seem to require much more than the ability to use a pair of scissors to snip the suture and use your fingers to pull the thing out. None of the nurses on the floor were able/certified to do this, so they had to call in the "crisis nurse", who apparently wanders around the hospital solving crises.)

Pulling off the dressing.

PICC with no dressing.

Pulling out the PICC.

The removed PICC!!!

No more PICC! (Yes, I'm smiling on the inside.)

Back on Track (in glorious boredom)

2008-04-17T14:45:00.000-07:00

(4/17/08 - did you file your taxes? Oops, too late now! Well, unless you filed for an extension, you cheeky monkey.)

Well here I am again, finally. Back in the hospital. My white cell counts were off the charts (high end) on Monday because of the neupogen shots I'd been taking, but I guess that's okay, because they know there were plenty of precursor cells to produce them. If there were only a few precursor cells or something else was going on with my bone marrow, we might be singing a different tune, but for now it's "Oh, I'm so bored in the hospital" (a little known ditty by an obscure but popular motown group in the 60's). On the upside, I've got a very friendly roommate this time around, so we've been chatting quite a bit. Also, a steady stream of visitors helps a lot (hint, hint).

Well, just one more day. . .

All Clear on the Bone Marrow Front!

2008-04-10T12:19:00.000-07:00

(4/10/08)

Woohoo!* The results came back and my bone marrow is perfectly fine and healthy. All the precursor cells are there, but I guess they just need some stimulation. I'll be taking neupogen shots for the next three days to get the marrow factories working again, but I hopefully should be all clear to go in for treatment next week (knock on wood!).

I was a bit bummed the past couple of days, even though I wasn't thaaat worried (not true for the fam, though). My low counts made some sort of sense, given all that's happened in the previous couple of weeks, without it being due to some new anomaly. There's always that pesky glimmer of doubt, though - the one that constantly says, "Yes, yes, it should be because of this that and the other, but what if...?" So, yes, I'm definitely feeling relief at this news. Whew...

* By the way, have you seen the new Washington Mutual ads? They insist upon spelling this word, "Whoohoo", or some such nonsense. what's the deal with the extra "h"? It seems someone thinks that's the correct spelling, but my two minutes of searching on the internet has not produced an explanation. The original song featured in Kill Bill, Vol. 1 and in the Vonage commercials was spelled, "Woo Hoo", but that was also by a Japanese band - and we all know how the Japanese like to butcher English (check out: www.engrish.com). Regardless, I still stand by my spelling, gosh darn it.

Delays Raising Brows

2008-04-08T17:51:00.000-07:00

(4/8/08)

I'm starting to feel like a broken record - "counts too low, counts too low. . . " This week they were even a little lower, 940, down from 1050 (course, that's probably within the error range of the neutrophil test). It's a bit of a cause for worry, so I had a bone marrow biopsy yesterday (ouch!) to check for any badness in the white cell production factories. Once we see what that shows, I guess we'll have a little bit more of a plan for what to do. My doctor thinks it's probably just taking the marrow a long time to recover from the combination of radiation, chemo, and two infections (zoster and then the random neutropenic fever afterwards), but I guess it's hard to speculate. I feel kinda frustrated, but this is supposedly "normal", meaning that it's definitely happened before to other folks who have gone through this treatment protocol.

On another note, I think my eyebrows are thinning out. I wonder if they'll go away completely. The hair on my head seems to come and go a little bit, but there's been a constant sparse fuzz there.

Still ain't there

2008-04-04T13:40:00.000-07:00

(4/4/08)

Well, I went in on Monday again, only to be told my counts were still too low. But it's not like they came up and just weren't high enough; they were actually about the same level as last Wednesday (1050 instead of 1040). Again the docs said there's nothing to really do except wait. Probably due to radiation and chemo combined, my bone marrow is just being sluggish. I've had some friends tell me that over-exercising can actually bring the counts down, so I guess I've been taking it mostly easy this week (though I did go climbing on Tues, and to Tai Chi on Wed). Of course there's other info that says regular moderate exercise brings the counts up. . . And then there's nutritional advice - some people say animal products reduce the ability of your body to produce natural killer (NK) cells, so we should all be more vegetarian. Then there's the mysterious-but-possibly-based-in-truth Chinese medicine advice, which says you should eat certain foods like frog legs (which I did do this week) to boost your immunity.

I think what gets me the most is the uncertainty and, being of a relatively scientific mind, the lack of data on a lot of this stuff. I suppose part of the problem is that the body is so complicated that even if there were tons of data on this and that, there's no guarantee that it would apply to me as an individual. Plus, there's no guarantee that the studies are controlled enough to yield a true result. I guess that's why every week the news tells us something else is either great for us or wrong for us or will turn our skin purple with pink polka dots, and then a year later that thing is in the opposite category. Ugh. It's endlessly frustrating.

2 days ain't good enough

2008-03-26T16:17:00.001-07:00

(3/26/08)

Well, it turns out two days isn't good enough to get the counts up. In fact, my neutrophils were a little lower (1040, from 1220). Seems to me like there aren't enough data points to really know what the neutrophils do in the interim between chemo cycles. Apparently they like to bounce around a bit before coming back up. . . The doctor doesn't seem to think physical activity/lack of sleep affects things too much, so there's basically not much I can do other than wait, wait, wait.

Oh, and there was a problem with the last post (part of it got cut off), so I went back and fixed the ending. Anyhow, just a short note this time. Guess we'll try again on Monday.

Well well well. . .

2008-03-25T15:12:00.000-07:00

(3/25/08)

Well, folks, I finally got out of the hospital two Saturdays ago, and I basically laid around the house for a couple days while my leg got slowly less painful. By Wednesday I could walk pretty well again, so since then I've been trying to do as much as fun stuff possible. A couple high school friends are in town, and we've been traipsing around the area. A little rock climbing, a little karaoke, a little bit of running around on the rocky beaches in SF and almost getting poison oak (cross yer fingers for us), some ice cream crepes in Japan town, bocce ball in Campbell . . . All in all it's been a good few days.

I was supposed to go in for treatment yesterday (Monday), but my total neutrophils were a little low (1200 - they can treat me at 1500). I'm going to try again tomorrow to get in, but I guess I'm not holding my breath. It's again the mixed blessing of well, I get to spend a couple more days feeling good, but I don't get the treatment in. . .

Update on my lung nodules

I did finally get a chest CT last week, and fortunately or unfortunately, the lung nodules are still there. They've supposedly gotten smaller (the largest is 3mm, used to be 4mm I think), but they're still there, which could mean a couple things. It seems to me like the resolution of the CT probably isn't good enough to distinguish 1mm. My doctor thinks they're probably just random specks of something, possibly just some inflammation, but the fact is we don't really know. If they are malignant, the chemo should have wiped them out by now. We can't biopsy them, since they're so small, and so there's no real way to know what they are. I guess we can hope for the best, which is that they're not malignant, and the disease has not metastasized beyond the pesky butt bump. More uncertainty, but I guess that's par for the course in this situation . . .

It's burnin' up in here

2008-03-13T18:35:00.000-07:00

(3/13/08)

Well I had a nice day and a half at home, and now I'm back in the hospital again. Man, this is getting ridiculous. I started having a high fever yesterday (102.3 F) and had to come into the emergency room. Luckily the on-call oncology doc (Whew! Say that one three times fast) called ahead and I was actually roomed pretty quickly. Plus, because of the zoster and potentially low blood counts, they had to isolate me, and I ended up in a pediatric room. Normally I guess this doesn't mean much, but at Stanford it seems to mean you get sweet diggs over the cold, sterile, and boring adult side. The room had a TV with normal TV, games, on-demand movies, and some other stuff that was less exciting. Plus the computer actually was accessible and allowed you to get onto the internet. The last time I was in an emergency room, there wasn't much more than the standard bed and sink in the room (well, plus all the doctor gadgets on the walls, of course).

They came in and did the bloodwork pretty quickly, and then we had to wait for the results. In the meantime, it was Shrek 3 and The Incredibles (true, the movies were all kid-friendly, but I happen to love cartoons/animation). The ED docs had specific instructions from oncology on what to do with me, depending on what my neutrophil count was (neutrophils are the white blood cells that help to fight off infection, according to my limited medical knowledge):

a) < 500 - get admitted for IV antibiotics and antiviral drugs
b) 500-1500 - go home with oral antibiotics
c) 1500+ - go home

Of course, the answer was a), and here I am. The docs think I'll need to stay here for a couple days until my counts come back up; then typically the fevers go away and things should be relatively "normal." Since I have to stay in the same room (usually I can go out into the hall at least and walk around), let's hope I don't go too crazy...