Posterous theme by Cory Watilo

A Thank You Note from Justin's mom

Thank you all for your show of love and support in memory of Justin. Creative energy and spirituality permeated both memorial services organized by his friends and family in New York and Hongkong, reflecting the depth and breadth of Justin's connections with his world. The large canvas with farewell messages was interred with Justin's ashes at the Yuen's family grave.

To those of you who had not known Justin personally but had participated in various events organized by his friends, such as those through Journey for Justin, I thank you for your generosity. Please be assured that your contributions went either towards his medical costs or to Memorial Sloan-Kettering Caner Center in his memory; a small portion might be used to ensure the completion of his last project, FamilyLounger, an easy communication forum for cancer patients and their loved ones. A body of Justin's works can be found on www.jyuenjyuen.com

As Justin would certainly have asked, what have I learned from this surreal experience? I now have my answer, that our lives are only as good as the quality of the community we will leave behind. From meeting many of Justin's friends these past months, I can conclude that his was indeed a pretty good life.

Please feel free to respond to the posts and to each other. You are the true legacy of Justin's life. I will continue to monitor the Justlive site as long as I find it uncorrupted by spoofs or spams.

 Posted by Margaret (Justin's mom) with much gratitude

 

 

Gather In Memory of Justin

March 12: New York
March 19: Hongkong

Justin wanted a party to celebrate life, in the same space that previously accommodated the heart warming fundraiser on his behalf. On Saturday, March 12, from 4 to 6 pm, we will gather at Salt Space, 1158 Broadway, 5th Floor, Manhattan, New York, to remember him. Lift your voice. Play your instrument. Share your special memory. Command the presence of the positive energy Justin left behind.

The memorial service for friends and family in Hongkong will take place at 11:00am on March 19, at St. John's Cathedral, Garden Road, Hongkong.

In lieu of flowers, donations in memory of Justin can be made to Memorial Sloan Kettering Cancer Center, P.O. Box 27106, New York, NY, and will be designated for the Music Therapy Program in his name.

Time, Tea, and My Guitar

(download)
Justin was writing a song, inspired by the generous gifts of time, tea, and a guitar from Paul McCartney, with whom a meeting was arranged by the Dream Team of Memorial Sloan Kettering Hospital. The thank-you song was nearly complete when Justin's lungs began to fail. At 9:30am, March 4, 2011, he left this earth to live only in the world of our hearts and dreams.
A memorial gathering will take place on Saturday, March 12, in Manhattan, followed by one in Hong Kong. Please check back here for future details of both.  

The Plot Thickens

The_plot_thickens
I thought I was in the clear, but just as I turned the corner, I was ambushed by the most dreadful of realizations: I had lost one of my most trusted companions - one that had seen me through horrible times, always by my side. But most often, on my head. My green fleece hat had gone missing!

Okay, that's not really what thickened the plot, but I must admit that for a time, I was very distraught by the loss of my fuzzy friend. Luckily, later that evening, one of the MSKCC workers found my hat near the elevators, and stored it in a nice protective biohazard bag for me to pick up upon my next visit.

The real plot thickening followed a lengthy day of doctor's appointments in preparation for my bone marrow transplant. Everything was ready. I had passed the echocardiographic stress and pulmonary function tests, and my blood counts were good. A treatment plan was in place, consisting of chemotherapy, radiation treatment, and double cord blood units (extracted from a baby's umbilical cord). It was decided to use cord blood rather than the found 9 of 10 HLA match, as this donor was willing to donate via peripheral blood only. I don't blame him, given the medical field's unfortunate assignment of the term "bone marrow harvest" to its alternative method, which evokes imagery of a dark, hooded fellow wielding a scythe (from what I understand, the bone marrow harvest procedure is a relatively mild affair). This term is rivaled only by the name of the procedure I underwent today: the "lumbar puncture", more endearingly referred to as the "spinal tap". Despite the harshness of the medical nomenclature, the procedure was completely painless. What was most unpleasant about it was the information it yielded.

The end of the day was approaching. Having finished signing three copies of the bone marrow transplant consent form, I was - along with those working in the clinic - ready to head home. But just as the day seemed over, the nurse told me to stand by for an unscheduled visit with my doctor, whose first words upon entering the consultation room were "We have a problem." Unfortunately, abnormal cells were found in my spinal fluid. This condition is prohibitive of a bone marrow transplant, and raises the danger that my cancer has affected my central nervous system. Early tomorrow morning, I will visit to the hospital again for an MRI of my brain and spine, which will be accompanied by tests of my blood and spinal fluid to determine just what type of cancer has pried its way into my backbone.

A funny thing I noticed today is that I was truly more shocked and disturbed by the loss of my hat than the news threatening the loss of my life. While I had become very familiar with the threat of losing my life, I had not yet pondered that of losing my hat. Apparently, learning not to take life and people for granted has not trickled its way down to the smaller things in life. I suppose there is still more for me to learn from this experience; perhaps this is the reason it has been prolonged.

Smart Cookie

Smart_cookie
We ordered take-out Chinese tonight in celebration of the Chinese New Year. The food was tasty, though for me, the highlight of the meal was neither the rice nor the dumplings; it was the uncannily appropriate teaching of a fortune cookie.

On one side of the slip of paper within:

"LEARN CHINESE - To wait
(deng)"

On the other:
"Faithless is he who quits when the road darkens"

Earlier in the day, I had read up on the myriad physical and psychological challenges of a bone marrow transplant. This gauntlet of risks and side-effects will likely be longer and potentially more trying than what I have been through thus far. I have no fear, though, as I charge ahead armed with the wisdom of tonight's dessert.

Bunnyear

Bunnyear
2010, the year of the tiger, mauled, clawed, dragged me between places of discomfort and places of pain.

2011 marks the arrival of the far gentler rabbit, whose amicable demeanor I most welcome. A painless bone marrow biopsy brought the comforting news of my leukemia being in remission. The surgical removal of the port implanted in my chest, refreshingly uneventful. Perhaps a warmer, softer, more docile year is to come.

May the cottony little creature treat you all very well. Happy Chinese New Year!

Hidden Scars

Hidden_scars
To be discharged directly from the ICU is an unusual occurrence. For a week, I had been in too good a condition to be there, but with no beds available on the leukemia floor, there I stayed, waiting. My blood counts gradually rose. The available bed count did not. Without reason for remaining in the ICU, and no bed, it was time for me to go home. I was released from my unwieldy tether of tubes and wires, free to walk as far as I pleased in any direction, free to rediscover the world outside the hospital.

Through the window of the taxi, everything was strangely new to me. The vast expanse of snow-covered trees and benches in Central Park contrasted so greatly with the crowded landscape of IV poles and stretchers to which I had become accustomed. I saw fashionable coats and boots in place of hospital gowns and non-slip socks, heard car horns and chatting couples rather than the beeps of medical devices and the subdued discussions of doctors.

It seemed at first that the hospital had become my home and my home had become a foreign place. Upon revisiting the hospital two days later for a follow-up appointment, I found that it wasn't just the outside world that had changed. The hospital with which I had become acquainted was seen from a wheelchair, stretcher, or hunched over the handle of an IV pole. Time and distances seemed unbearably long. Elevators crawled, and hallways were endless.

But on this visit, I walked upright, wearing outdoor clothes and shoes. The elevator was just a short distance from the building entrance, the ride up to the fourth floor was brief. Along the way, I saw the tops of people's heads rather than undersides of chins. I was no longer an inhabitant of this place, but a visitor passing through. There were other former in-patients seated in the clinic lobby whom I recognized from the leukemia floor on which I had stayed. They had also exchanged their hospital gowns for winter coats and scarves, wholly indistinguishable as cancer patients, and would soon leave the building to blend in with the rest of the people walking the streets outside.

It is rarely evident on the surface all that a person has gone through in life. The scars on my body have all become hidden from view beneath layers of winter clothes. I have lived a healthy life, experienced the deterioration and weakness that old age brings, been near death. Now, I feel reborn, gaining strength, relearning how to walk, to eat, to be independent. The newness of the world around me is a great thing. I have been given a second life, a second chance to readily absorb my surroundings, to learn new things, only I can still recall all I have learned from my previous life. I am grateful for this, for it has given me both a new understanding of people, as well as a renewed sense of purpose, an urge to use all that I have been given to give back to the world.

Tomorrow, I will return to the hospital for a bone marrow biopsy and CT scan, the results of which will determine whether a bone marrow transplant is possible. No matter the outcome, I am glad to be feeling well at the moment, and immeasurably thankful for being given the strength and support to endure a journey more arduous than I could have imagined.

Less Energy, More Wisdom

Less_energy_more_wisdom
Friday morning, I stood up to have my weight taken. My vision blackened. My sense of balance faltered. Could I just be exhausted, having spent the majority of the day prior practicing the guitar? Perhaps my red blood cell count had dropped due to my last round of chemotherapy. My blood pressure indicated a different problem. An EKG and ultrasound later, it was determined that fluid had built up in my pericardium, the sac containing the heart, impairing my heart function. Interventional Radiology drained nearly a liter of fluid from around my heart, left a chest drainage tube, and sent me to the ICU to be monitored. While there, some late effects of the last round of chemotherapy arose; my appetite, hair and energy all left me at once.

I have observed that when I am feeling energetic and well, I spend the majority of my energy getting work done and enjoying myself. This activity-focused behavior leads to an accumulation of experience and knowledge, but not understanding. In contrast, during times of sickness, while I have little energy, I tend to use every bit of it in contemplation, taking nothing for granted. It has been during these times in which I have gained the most wisdom in life.

As I find myself on the way to recovery once again, I question, once I have fully recovered from my sickness and find myself with ample energy, how and whether I will remember to take nothing for granted.

Dedicated To You

Dedicated_to_you
With my gradually increasing energy level, I've started designing and programming FamilyLounger.com. It will be a website consisting of super easy-to-use tools to help patients and their loved ones through tough times. This project is dedicated to all of you who have helped me in more ways than you can imagine.

Small Talk

Small_talk
Having recovered from a fourth round of chemotherapy and another bout of pneumonia, I'm starting to taste a bit of normal life. But there are always the funny little things that remind me I'm still leading the hospital lifestyle.

Take my recent conversation with my nurse, for example:

Nurse: "Hi! How are you doing?"
Me: "Good. How are you?"
Nurse "Great!"
Me [remembering seeing my nurse many times over the past week]: "How many days a week do you work?"
Nurse: "We don't do days per week - we do days per month" [The conversation continues... Skip forward,,,]
Me: "How far from work do you live?"
Nurse: "Not too far. Downtown."
Me: "So how long does it take you to get to work?"
Nurse: "About twenty to forty minutes. So have you moved your bowels today?"

Yep, that's part of the everyday chitchat here in the hospital. Imagine asking that question in the office...