Daifung vs. The Brain Invaders

Greetings to everyone; I hope you are all doing well. The last chemo round was without incident and I was back in the office to start my new role last Monday. I’m excited to have a bit more purpose at work, and to have a role where I can really contriubte while still focusing on my health.

While the new job is exciting, most of my recent excitement has centered around a couple upcoming short trips. Nicole and I will spend a few days in Singapore (work for me) and then will go to Shanghai for a friend’s wedding celebration. Much fun!

I’m also excited about my new toy cameras, pictures from which litter the post today. The picture at the top of the page was taken with my new Holga, an all-plastic Chinese-made camera that uses 120 roll film. Holga’s are about as simple as can be, with a plastic lens and essentially no control over focus, aperture or anything else. The results are regularly crap, sometimes incredible and always unpredictable. It’s a $40 camera and it’s a ton of fun.

The pictures above and below came from another cheap plastic camera called Pop9. It takes 35mm film and has 9 plastic lenses that fire at the same time to create 9 identical images on a single frame. Once scanned and loaded into Photoshop the pictures are really fun and sometimes come out great.

The last picture (below) is from yet another plastic camera called Oktomat. This one has 8 tiny plastic lenses that fire in sequence over the course of a few seconds for a single frame with 8 sequential images. Like the Pop9, it uses 35mm film and is highly unpredictable but adictive once you get it into photoshop.

Well, that’s it for today. I feel well and am excited for our little trip. It’ll be great for Nicole and I both to get away for a little while before returning to the chemo grind in a couple weeks.

Take care everyone and enjoy the Autumn!

-Ted

Well, I didn’t realize until just now that it’s been almost a month since my last posting. I guess work was keeping me more busy than I thought. I completed my 8th course of chemo on this past Wednesday, but it took several days for me to fully recover and I didn’t feel genuinely normal until this morning. I’m now 2/3 through my planned treatment!

To celebrate feeling better (and because there was a planned cut in electricity all day today at my building), Nicole and I spent most of the afternoon wandering around Hong Kong Park where I tried my hand at some macro photography. I only wish I had a proper macro lens, as getting really close was definitely a challenge. Ah well.

This week-end Nicole and I also bought our tickets for Shanghai, where we will attend a friend’s wedding party in October. It will be Nicole’s first time in Shanghai and our first time traveling on the mainland together. The only real problem is the expense of a visa, which now is more than $150US for a single-entry. I guess they are striking back at the US, who have been raising visa fees for Chinese for a while now. It all seems so silly to me.

Well, guess that’s about it for now. I’m back to work for 3 weeks before my 9th course of chemo starts. I hope you are all well and apologize for not making updates more frequently (or keeping up with my email correspondence…). Take care and enjoy the Autumn!

-Ted

Victoria Park and the Central Library

Hello all. Today I will start my 7th cycle of chemo. After some extended discussions, the oncologists have agreed to follow the protocol used at Duke and I will have at least 6 more cycles, for a total of 12. That will cover me through the rest of the year. I have another MRI in early August and hopefully it will continue to show positive signs, meaning that all the treatment has been worth it. The doctors also don’t think that the delay in starting my next cycle will have any adverse affects.

Black Kite

The weather today is pretty crummy, hot and humid with terrible visibility. I guess it’s not a bad time to be stuck in bed. The week-end was really nice though, with clear-blue skies if a bit hot. Nicole and I went with her mum to Cheng Chau, a small island that is mostly beach and fishing villages, on Sunday and that was fun. I also took advantage of the weather on Friday afternoon and Saturday to take a lot of photos around Hong Kong.

View from our window

I hope you are all well and enjoying the summer. Take care.

-Ted

A’s vs. Angels at the (former) Coliseum

Hello all. Nicole and I are in San Francisco now, enjoying the last few days of our California visit while somewhat dreading the return to Hong Kong (at least I am, since I start the next chemo cycle very soon). We’ve had a great time so far and Nicole has seen a nice cross-section of the Bay Area. Over the week-end we had Mexican food in Alameda and went to an A’s game (which we lost, damn!). After the game, Duncan and Alison hosted an excellent BBQ with about 25 folks, some of whom I hadn’t seen in around 10 years (or more). Thanks Duncan and Alison!

Monday followed with a busy day going to see Redwoods in Big Basin, eating burritos and checking out the surfers (and eating blackberries) in Santa Cruz, driving up RT 1 to enjoy the coastline before bowling at Sea Bowl and closing out the day with great Cantonese food at Koi Palace in Daly City.

Mother of the Forest @ Big Basin

Surfers at West Cliff, Santa Cruz

Yesterday we checked-in to the Marriott at Fisherman’s Wharf where we will close out the trip. We went full-on tourist, having chowder and funnel cake at the wharf after having visited Coit Tower. The weather was great and the bay views from the top of the tower were pretty stunning.

San Francisco from Coit Tower

That’s it for now. We have a busy day ahead and want to make the most of our remaining time in the USA. Thanks to all those who have shown me so much support over the last many months and especially these last few days. Your support along with the good news from Duke has really revitalized me going into the next round of treatment.

-Ted

The Ohio River and the Town of Marietta from the Williamstown Bridge

Well, today marks the end of my visit with my parents in Ohio. It’s been a great trip, very relaxing and damn fun as well.

This week we my Aunt, Uncle and Cousin came from Boston and NYC to visit, and we all went to Serpent Mound, an ancient Native American ceremonial mound built by the Hopewell culture. The mound is in the form of a long, undulating serpent, with the coils pointing towards the various points in the solar cycle (equinoxes, etc.).

In addition to Serpent Mound, we also visited Ash Cave near Athens Ohio. Ash Cave dominates my childhood memories of visiting Ohio and is a huge over-hang cave with a waterfall falling into the center. It is quite beautiful, especially in winter when the bottom of the waterfall becomes a huge ice stalagmite. Of course, it being summer there was no ice, but the lush surrounding valley was pretty special on it’s own.

After that, we just wandered around town taking pictures of interesting houses, the river and my Dad’s shop (yes, that’s an igloo dog-house on the sign).

North Pole Gunsmithing

We also went to my mother’s Rotary Club meeting, where she received an award. They also (much to my surprise) presented me with an award for perseverance and for remaining positive through my current situation. I don’t know that I deserved any awards, but my mom certainly does for all the work she does for the kids in town.

Well, that wraps up the mid-west branch of our trip. It’s been a blast to be sure and with the exception of Nicole’s cut-throat Monopoly play it’s been all fun. Tomorrow we fly to San Francisco for a week with friends before I go back to the chemo routine.

Take care everyone.

-Ted

The Ely-Chapman Education Foundation Building in Marietta, OH

Greetings and happy 4th of July to everyone!

Nicole and I are having a restful time here at the family homestead in Ohio. The trip to Duke proved to be well worth it and quite confidence inspiring. We met with Dr. Friedman with no wait and he confirmed that given my age and condition he would not recommend surgery at this point. Removing the tumor would almost certainly cause me to loose the function of my right eye, and because my brain would still be trying to create an image from both eye’s, reading and other activities would likely be very difficult for the rest of my life. Not very appealing.

After meeting with me, Dr. Friedman arranged for me to have a consult with Dr. Reardon who is one of the (or the?) head neuro-oncologists. He looked at my scans and had his PA interview me and run some basic neurological tests which all came out normal for me. Then he had his PA sit down with us and look at all my scans; even I as a layman could see the difference in the most recent scans. Dr. Reardon believes that the scans along with my general conditon are very positive and point to a good response to the chemo. He also said that the standard treatment plan at Duke is 12 cycles of Temozolomide followed by a PET scan. The PET scan would show metabolic activity in the tumor, and if there is any activity showing, they would continue the chemo. Once there is no metabolic activity, then I could stop the chemo. Aside from it being good news that the drugs appear to be working, the plan they follow confirms the next steps that my doctors in HK were planning. All in all positive news.

Nicole and I are now back at my parent’s home for a week before we head to the bay area. Yesterday we went to my mom’s foundation to tour the building and find out what they are up to, since
I hadn’t seen it in several years. The foundation is located in what was previously the town’s first high school. When my mom bought it 10 years ago it was in pretty bad shape, but she and the folks here have fixed it up and made it a community centerpiece. They provide programs for disadvantaged kids, helping to improve their basic math and English skills as well as educating them about regional history, Native American culture, ecology and conservation, as well as a wide variety of other topics. They also provide free meals to their students and run full-day programs during the summer as well as after-school programs during the school year. If all that isn’t enough, the building now also hosts a karate dojo, a boyscout troop, a garden project and a community theater program (which takes advantage of the gymnasium and full stage on the top floor of the building). It’s very impressive and I’m extremely proud of my mom and all the folks who make it possible.

Well, that’s it for today. We’re having a family BBQ this afternoon to celebrate the 4th and I need to get dressed and start getting ready. Have a happy 4th and be well.

-Ted

Kyaiktiyo Golden Rock – Myanmar

Greetings to all my friends and apologies for being delinquent yet again in posting. The delays this time were intentional as I wanted to wait until after my appointment with Dr. Pu today.

Over-all the news is good. After 6 complete cycles of chemo (plus the chemo-radiation before) my last MRI showed significant reduction in tumor size. It is a very good sign that the Temozolomide is working, which justifies the hell the I go through 1 week out of every four. Before anyone gets too excited though, the tumor is still quite big and things can change suddenly and without warning, so I am a long way yet from being out of the woods. That said, I am focused on the positive.

The picture above is from a place called Kyaiktiyo in Myanmar. It is one of the holiest sights in the country and at sunset it definitely feels magical, though the long and arduous walk up the mountain first may contribute. Hopefully the next few posts I will have brand new pictures from my visit to the USA!

Take care of your selves and each other.

-Ted

[PICTURE COMING!]

Well, that’s 5 full-strength courses of Temozolomide finished. Whew! This round wasn’t too bad since I was back on the previous mix of anti-emetics (vomit pills), though still no fun. My body continues to try to prevent me from taking the pills, making me gag now even if I just look at them. I take it as a sign of health, since no healthy body should want poison.

There’s no meaningful update on my progress at this point. I will have an MRI in a few days on the 30th, but I won’t know the results until I see Dr. Pu on the 23rd of June. In case I didn’t explain previously, the long wait is due to the fact that surgical consults are Monday only, the 9th is a Hong Kong holiday and the 16th is during my 6th chemo course. I continue to feel well and to hope for good news.

The only other medical-front update is that I now have an appointment to see Dr. Friedman, the top US neurosurgeon, at Duke University Medical Center, the top facility in the world for treating brain tumors. I am also hoping to see one of their neuro-oncologists if I can arrange an appointment at the same time. We will drive down to Duke from my parents home and spend 2 nights, and I’m excited both to see friends there and to see the doctors. Many thanks to my good friend Alice for helping to get this set up.

On a totally different note, I attended my first real Hong Kong-style wedding on Sunday (Nicole and my wedding was a strange Californian/Chinese meritage). My brother-in-law Dominic was the groom and it was pretty interesting. There was late-morning tea followed by a civil ceremony, then a big banquet. It was a jovial event all around and everyone had a fine time. What amused me most (and, since I couldn’t sleep the night before, pleased me most) was the tradition of the receiving line at the end of the banquet. At a little before 10:30 the whole wedding party lined up by the exit and shook the hands of all the guests as they left. I think it’s a great tradition, a nice friendly ‘thanks for coming now go home’ that allows the bride and groom an opportunity to get away at a reasonable hour. Anyway, much fun and hopefully I’ll have some pictures of the event to post later.

Other than that not much news from my end. The plans for Nicole and my visit to Ohio, North Carolina and California are now firmed up and ticketed, if you want details of when we’ll be where and what we have planned drop me an email.

Take care of yourselves and each other, and try not to let life get too serious.

-Ted

Koh Pha Ngan – 2004

Hello everyone. The picture above is a little old, taken back in 2004 at the tail end of a trip to India and Thailand. I took the picture from the top of the mountain overlooking Bottle Beach, possibly my favorite place in the world. Even though I was incredibly sweaty (see picture 2), it was a great hike and fantastic sunset.

Anyway, I will start my 5th course of chemo tomorrow. I’m not really looking forward to it of course, but I keep telling myself it’s only 5 days and it’s making me better. I’ve continued to feel good generally and remain convinced that I am improving.

My MRI is scheduled for the 30th, but I won’t be able to get the results until the 23rd. Normally it would be a week after the MRI, but neurosurgical consults are only scheduled on Mondays, the 9th (the obvious date) is a holiday in HK and the following week is my 6th course of chemo, so the 23rd is it. Hopefully the MRI will bring some really positive news.

Planning continues for the visit to the USA and Nicole and I are pretty excited. I found out today that my brother John is going to come down to the Bay Area when I’m there the week-end of the 12th, which along with my Aunt and Uncle coming to meet us in Ohio means I’m going to see a lot more family than I thought. It also looks like I’ll get to see an A’s game for the first time in a few years and be able to see most of my favorite spots in the bay area. Of course, life is unpredictable so who knows exactly what will happen.

Well, that’s it for now. I need to get ready to start the chemo tomorrow and want to get to bed soon. Thanks for paying attention and for all your support.

-Ted

Nicole and Ted at the Shangri-La on wedding day

The picture today just arrived in an email from my friend Harry, so thanks for that Harry (and hope you have more for me when I’m in SF). Speaking of which, if anyone does have wedding photos or video they haven’t given me, please get them to me when I’m in the US if at all possible.

So, I finished my 4th cycle of chemo on Sunday and am now 2/3 done my planned treatment. This round was tougher than the last, possibly because of a change in anti-emetics. Regardless, it’s over now and I am glad to be well past the half-way point.

The next cycle will start a few days early so that I can attend my brother-in-law’s wedding at the end of March. I will also take my next MRI shortly after, so hopefully that will be good news.

Not much else to say today. I hope everyone is well and I am looking forward to seeing some of you soon.

-Ted

Ted & Nicole at Repulse Bay

Greetings to all of my friends, hopefully the server move has not lost too many folks.

Today I met with the oncologists and they cleared me to start my 4th round of chemo tomorrow. My blood as well as my liver function is completely normal and I continue to be pretty asymptomatic as far as I can tell. I’ll be out of contact for the next 5 days while I work through the chemo so don’t be surprised if I’m not responsive.

I’ve made some progress on putting pictures up on my Flickr! page, so take a look if you have time to kill. There is a link on the side of this page. I’m getting ready to tackle the big picture projects, my trips to Laos, Myanmar and Bhutan. A lot of pictures to sort through. Eventually I hope to cull the very best to put on the web.

I also found out today that my next MRI is scheduled for May 30; although I don’t have ‘official’ notification from the MRI department at the hospital, the appointment is apparently set in the computer. I had hoped for an earlier date, but having it right after I finish my 5th course is ok. Hopefully it will show that the tumor is definitely shrinking, dieing or otherwise diminishing in actual and potential impact. I continue to feel well (on the days I don’t take chemo) and count that as a serious blessing.

Thanks to all of you for all your support, prayers and positive vibes!

-Ted

The Great Wall at Simatai

Greetings all.

Well, if you are reading this you have found your way to my new blog location successfully. If you’d like to add my blog as an RSS feed, you can use:

http://www.daifung.com/brainblog/?feed=rss2

The reason for the switch is to get off of Yahoo! for hosting, since there’s no telling what will change when the Microsoft acquisition finally goes through. The plus is that Network Solutions (my new hosting provider) provides better hosting tools, all of which are open-source, so I should be able to do a bit more in the future. After all, I need to find something to occupy my time until I’m back at work.

So, why daifung.com? Dai Fung is cantonese for ‘great wind’ (make whatever jokes you like) and is my non-professional Chinese name. Of course, there is a story.

When I first went to China in 2005, I went to see the Great Wall at Simatai. The Simatai section of the wall is about 3 hours from Beijing, and is a lot quieter and less crowded than the Badaling section near Beijing. Walking on parts of the wall is actually a little tough, as it is extremely steep in places with a precipitous drop to the side. Now, when a foreigner starts walking up the wall, a local will inevitably start following you in hope of selling souvenirs. The woman who was following me was nice enough and did her best to give me a tour in her limited English, as well as trying to teach me some Mandarin.

After we reached the top and were headed back down, while on one of the steeper sections, a big gust of wind blew off my guide’s hat, and as she lunged to catch it she came very close to falling off the wall. Considering it was about 40 feet down onto a broken-rock slope, she probably would have broken her neck. She turned to me with bulging eyes and just said ‘da fung, big wind’, to which I responded for no apparent reason, ‘wo xing da fung’, which means ‘my name is big wind’. This she found hysterical and we finished walking down the wall. From that point forward, every person I met I introduced myself as ‘Da Fung’, which seemed to be an instant ice-breaker. Translated to Cantonese, it becomes Dai Fung.

So, that’s why this blog is hosted on www.daifung.com. I hope to post more here, as well as more pictures on the gallery site (http://www.daifung.com/gallery) and whatever else I have the time and inclination to come up with.

Thanks for visiting.

-Ted

Hello all!

Well, I’ve finally gotten around to putting wedding pictures on the web. I guess I’m only a year and a half late, so not too bad all things considered. The pictures are all hosted on a new website using a new tool, so bear with me if it doesn’t work perfectly. You should be able to view pictures at:

http://www.daifung.com/gallery

There are actually 2 separate galleries. One is a collection of wedding-day photos from many different people, and the second contains studio pictures taken before the wedding (a Hong Kong tradition).

Other than that there’s not much to say. I start the next chemo cycle (#4) a week from today and am just trying to relax until then.

Best wishes to all of you.

-Ted

Hello all.

No real news to tell today but I’ve had a few requests to try to update more regularly so I’m going to shoot for once a week. I’m a pretty bad correspondent, so no promises.Folks have also been asking for pictures, so I’m going to try to add a photo as often as possible. To that end, here’s a picture of my whole HK family +Jody from when she was visiting a little while back. I promise to put in the much-requested picture of my flat the next time.

Thanks to my mom, the itinerary is all set for Nicole and my trip to the US in July. We arrive in SF late on the 4th of July and then head on to Ohio first thing in the morning. We’ll be with my folks in Ohio from then until we return to SF late on the 11th, leaving again the night of the 18th. I’ll definitely be contacting folks in the Bay Area to plan further, but the A’s are playing on the 12th and 13th, so that will be factored in somehow. I also am hoping to convince Nicole during this visit that we need to move to the bay area some day, so all your help there is appreciated.

I feel well and have a little over a week before the next round of chemo, so Nicole and I are trying to relax and take advantage of the time together. Thanks again for all of your support and encouragement!

-Ted

Greetings all and sorry it’s been so long.

Well, I’m now 1/2 done my chemo, with 3 cycles completed. The third cycle was much like the second, and I was able to recover within just a couple of days.It’s interesting to see how my body adjusts. Each cycle it seems my body gets a little more used to the chemo, and the vomiting from that gets a bit easier and more predictable. At the same time, my body has learned that the chemo is poison, so it gets tougher and tougher to actually get it into my stomach. As soon as I think about it I start to gag and my stomach cramps up. I’m even feeling a little nauseous right now thinking about it. I won’t have another MRI for a month, so nothing new to report on that front. I still feel well (when not on the chemo) and hope that is a sign.

This month also sees me past the 6 month mark since my first diagnosis. It seems like a lot longer when I think back over all the treatment, hospitalization and (mostly) waiting. It’s been a lot to get used too, and I still don’t sleep particularly well. Sometimes I am able to totally forget about my condition, other times…

I want to take a moment to thank all the people who have supported me, whether you visited, called, send cards or emails, or just sent me positive thoughts it really does mean a lot and it helps.

Thanks

-Ted

Greetings all.

As some of you already know, today was a big day for me since it was MRI results day. To make a long story short, the results showed essentially no change. In the grand scheme of things, it is definitely good news because it indicates the tumor is not growing. Obviously I would prefer to see the tumor shrinking, but I have to remind myself this is only the 2nd course of chemo and I need to be patient.

I will continue to take chemo and have another MRI in 2 months or so to see what’s going on. Hopefully between now and then my brain will get tired of this whole thing and start killing off the tumor. For my part, I need to keep myself focused on the positives and move along.

Hopefully I will soon get some good news from the insurance company as well. Up to now they have been a serious challenge, not wanting to pay for any of my chemo. I’ve been told they will cover it ‘up to the policy limit’, but no one has yet told me what that means in practical terms. Yet again, the insurance industry puts it’s best foot forward. Hopefully I will get a clear, numeric answer soon so that I can finish my US taxes. There’s nothing quite as fun as going through all these medical challenges while also trying to get both US and Hong Kong taxes in order. Hong Kong is actually pretty simple, with virtually no deductions but a low tax rate. The US, as a US citizen living abroad, is less clear. Oh well.

Beyond taxes, treatment and general life there’s not much more to say. We are all settled into our new place now, though I am still getting used to how small it is. The address is:

Flat 2, 26/F, Block B
Causeway Centre
28 Harbour Road
Wanchai, Hong Kong SAR

Anyway, hope all is well with you and your families.

-Ted

Hey there and happy leap day to all. It looks like chemo cycle #2 is done, and though it was still pretty rough, it was a LOT better than the first cycle. I think the key differences were the new medication as well as forcing myself to eat more over the week. I’ll see the Chinese medicine doctor on Monday, which will hopefully accelerate recovery from this round.That’s it for now. Thanks to all for your continued support.

-Ted