Daifung vs. The Brain Invaders

Well folks, my first 2 treatments were not exactly what I expected, though I guess that itself is to be expected.

Monday morning was my first day of treatment and it was a little hectic. Nicole and I had to figure out the week-beginning process (line up, pay for consultation & radiation, meet with doctor, get chemo prescription, pay for chemo drugs, pick up chemo drugs, take chemo drugs, wait 1 hour, undergo radiation, go home). We left home at 8AM and got home at 2PM pretty worn out. During the initial consultation the doctors said the anti-nausea drugs were to be taken ‘if necessary’ so I, foolishly, decided to wait to see if I needed them before taking them. That was a pretty big mistake as I was unable to keep anything, including water, in my stomach from about 4:30 until after 9:00, and felt pretty poorly that whole time.

Eventually I was able to eat some plain rice congee and drink a little water before falling asleep.The next day was significantly better. I was fine to eat in the morning and my schedule was simplified to: anti-nausea drugs at 7, breakfast at 7:30, chemo drugs at 9:30 (on the way to the hospital), radiation at 10:30, home around 11:15 and lunch around 12. The anti-nausea drugs seem to have worked pretty well. There were a few hours of feeling moderately ill, but I was able to eat and keep it all down (touch wood). Hopefully that pattern will continue and/or improve.

I feel a little guilty, as my friend Erica arrived for a visit and I am not exactly the best company. I feel pretty tired and wasn’t much good for anything beyond watching a little TV and napping. Hopefully as I get used to my schedule and the treatment I will be able to be a bit more active. I have also fallen behind on my email and am hoping to get caught up over the next couple days. I do appreciate all the messages, even if I have been slow to respond lately.

While worn down, Nicole and I are staying positive. I truthfully don’t know how I could make it through this without Nicole.

I hope everyone is well (or on the way there) and that the Americans out there are ready for a happy thanksgiving.

-Ted

Well, tomorrow is the day and I will begin my first 6 weeks of treatment, 6 weeks of combined chemotherapy and radiation sessions.

Believe it or not (especially from someone who usually talks too much), I’m really not sure what to say. I feel like I’m more nervous about tomorrow than I was before my surgery, which makes no sense at all. Maybe it’s the fact that radiation is pretty much synonymous with cancer in the language of our culture; starting radiation treatment means accepting in an unequivocal way that I have cancer. Heavy. Not really knowing what the side-effects will be like doesn’t help.

All that said, I am ready to get started, and I’m definitely excited to be taking positive steps towards eventual recovery. This phase of treatment is only 6 weeks, not a lot of time in the grand scheme of things, so I guess it can’t be that bad.I do want to take a moment to thank Andy and Rob for visiting me the last week. It was a blast to see them and for a week I was able to feel pretty normal, at least as much as is possible when the 3 of us get together any way. Tomorrow my friend Erica will be showing up for a visit as well. I’m looking forward to her visit and only hope that I will be well enough to be good company.

Anyway, it’s late and I have an early morning tomorrow so I should go to bed. Thank you all for your support and positivity, and sorry again for my tardy correspondence. I will try starting tomorrow to report at least something every day, though I don’t know what I’m going to find to talk about.

Best to you all, and do continue to take time to enjoy your life, your friends and yourself every chance you get.

-Ted

Greetings all, and sorry for the lack of updates, this week my friends Rob and Andy have been visiting and keeping me a bit more busy.

First things first, today there is big news. I was called into the hospital today to have my head mold checked. This involved sitting with my head ratcheted down to the gurney while they used a testing radiation machine to make sure all was set correctly. When Nicole and I arrived we also found out that treatment (radiation and chemo) will be starting Monday morning at 9:30AM. While I would have liked a bit more advanced notice on the timing, I am definitely happy to get started on my treatment, though I am also apprehensive about potential side effects. I guess all the answers will be forth-coming soon enough. Starting on Monday, it looks like I will be finished with the radiation just after Christmas and before New Years.

It’s been really great having Andy and Rob in town the last few days. They’ve really helped keep my mind off the (previous) questions about treatment and focused on more important things like humor and reminiscence. I know it was a major effort for these fellows to get the time off and make it out here, and I really appreciate it. The timing is also perfect, with a last bit of fun before treatment begins. The fact that they also brought a giant duffel bag full of books is also great preparation for the likely boredom of my upcoming treatment.

Sorry again to all for being sloth in my correspondence as well as blog updates. I am working on thank-you messages to all those who have been sending me gifts recently, and am getting almost caught-up on my emails as well. I am setting myself of a message a day on the blog while I am in treatment and really want to follow through. I’ve been told that simple goals are important in getting through radiation and chemo, and this seems like a good one.

Well, that’s it for today. I will get the updates back in gear this week-end; wish me luck as I enter my first round of chemo and radiation.

-Ted

Well, today is Saturday and no news yet on the schedule for my treatment. To be fair, I was told it would be about 2 weeks, though no one has said exactly from when. I’ll check back with the hospital at the beginning of the week and hope to have more news then.Happily, I’ll have a lot to occupy me while I am waiting.

Most important will be Nicole and my first wedding anniversary tomorrow. As you can imagine, it’s a time of significant reflection, thinking about all that has happened over the last year. More than thinking about the past, I mostly think about how lucky I am to have met Nicole. Words are insufficient to explain what she has meant to me, and the affect of her optimism, positivity and motivation as I face the tumor that is growing in my brain. On my own I might be tempted to resign myself to the vagaries of probability, but with her inspiration I can remain positive. I sometimes try to sit down and put words to her inspiration, but every time I find the task impossible. All I can say is that with her help I look forward to many more anniversaries to come.

Of somewhat less life-changing impact, I yet am incredibly excited that my friends Rob and Andy will be arriving on Monday for a week’s visit. Both of them were groomsmen at my wedding and just thinking about their visit has put me in good spirits. Thinking about the fact they are coming so far (and with a great deal of cost and hassle) means a great deal and I definitely appreciate it. Thinking back to their last visit and the visits of all of my friends who made the journey out for the wedding just reminds me again how lucky I am to know so many amazing people, and how I owe it to them all to overcome my current challenges.

That’s it for now from me. Sorry for the infrequent updates recently, but while I’m waiting for word on my scheduling I’m doing all I can to take my mind off it. Thank you all for the many emails, gifts and good wishes and take care of yourselves and each-other.

-Ted

Well folks, I wanted to post something, even though I don’t have a lot to say today.

Clearly I need to start talking about something other than my condition or progress, at least until either one changes. Right now I am still waiting for the final scheduling/planning to be completed so that I can start treatment. Yesterday I spoke with the oncology planning department at the hospital and they said ‘about 2 weeks’ but couldn’t come up with a date or anything more specific. I’ve been advised by some folks out here to become a pest, so I guess I will start asking every couple days until I get an answer. I’ve had a few rough headaches recently, and will likely go in to get checked out if they continue beyond today, but I have been told that headaches are normal. Yahoo!

Next week will be Nicole and my first wedding anniversary, which I will admit feels a little bittersweet. We don’t have any big plans as yet, but are hoping to come up with something. My restricted diet prevents us from going to our favorite oyster bar, alas. It would be impossible not to take some time to reflect on the last year; really the last 2 years. I think about the string of coincidences that brought Nicole and I together and yet again my faith in the world is re-affirmed. From a few hours of dancing together, to emails and phone calls, to quitting my job and moving to HK and finally to marriage, I feel as though the gods reached down right when I needed and provided me the strength and perspective to make it through this current challenge. Certainly I know I could not get through all this without Nicole. She has been a source of strength, optimism, warmth and hope, and all else I would like to say lacks sufficient language to express.

Next week I will also have a visit from my friends Rob and Andy, who I last saw at my wedding. It will be a nice reunion and I am deeply touched they would make the effort to get here, as it definitely is not easy and I am grateful.

That’s it for today. I will try to post more often, and as always I wish you the courage you to live each day to the fullest and appreciate each day to the utmost.

-Ted

Wow, it’s hard for me to believe both that it’s been a while month since I had my first diagnosis and that it’s been a whole month since I had my first diagnosis. It seems like just yesterday that I was standing outside the clinic in shock, trying to make sense of the words ‘brain tumor’. At the same time, so much and so little has happened in the last month that it seems like that first day was a year ago, or at least several months.

As the days pass, I definitely find my attitudes changing. In the first few days, the immediacy of my diagnosis was so over-powering that I think it completely overwhelmed my sense of time and perspective. It felt in those first few days that I had only a few days left, even though intellectually I knew that was not true. Now, the 2 years that statistics would give me seem like an eternity. I think about how much has changed for me, how much I have learned and grown and how different my thoughts are now from what they were 2 years ago, and I find myself astounded at just what is possible in so short a time. For the most part this bolsters my confidence and positivity, especially given the speed at which medicine seems to advance.

How would I respond to blindness? I want to believe that I would maintain my positivity, that perspective and philosophy would carry me through, but there is no way to know for sure. I know it’s a morbid thought, and I don’t want you all to think I’m sitting around worrying about it all the time, but there’s no way to completely eliminate these thoughts from my mind, no matter how positive. Maybe this is my way of saying to any of my friends who are going through some of the same thoughts and feelings that it’s ok, that there’s nothing wrong with thinking about the worst-case scenarios sometime. More importantly, it’s important for all of us to remember that understanding what could happen is different from losing hope and optimism. Hope is a magical force that requires no objective basis for its power.

What have I learned over the last month? I’ve clearly learned a lot about myself and about how I view the world. I’ve learned that life is filled with beauty that is occasionally obscured by the silt of the everyday, and that that silt can be washed away in an instant. I have learned that the unexpected and amazing happens every day, and that in our own perceived hardships there are innumerable opportunities to grow. More than anything I have learned that the my life is filled with the most amazing, funny, bright, caring, thoughtful and inspiring people anyone could ever be lucky enough to know.

Thank you all.

-Ted

Hello all.

Yesterday was a busy and positive day for Nicole and I. The good news is that I received my Hong Kong dependent visa renewal yesterday, which means I remain a legal resident of HK for at least the next 2 years. While the immigration lawyer had told me all along that these renewals are no problem, the American in me remained very concerned about the possibility of losing my visa, hence losing my HK medical coverage. Having the new visa in my passport takes away one source of stress and is indeed a great relief.

I also yesterday had what may be my final pre-treatment CT scan yesterday. It’s particularly interesting in that the radiotherapy device is controlled (or programmed, or something to that effect) based on the CT scan, but an MRI is actually a much better tool for imaging the brain. The result is that they will use a composite of MRI imaging and the CT scan to derive the final programming for the radiation. I’ve not yet delved into the deep technical details, but it is a reminder of how far the technology has come.

Yesterday’s scan was also a bit of practice for me, as I was wearing my new head mold. It is a very odd sensation to have that thing on, as the mold is very firmly clamped to the table (hence immobilizing my head). It’s not uncomfortable, but then again it’s not exactly comfortable either. I do hope I can get a picture at some point.

In truth, the big challenge for me now is the waiting. I still don’t have a final date on when my treatment will start, and much as I’m enjoying my little ‘break’, I am also eager to get started on treatment and all that will follow. Thanks again for all of the cards and messages and general positivity you have all been flooding my way; it really does make a difference and helps me keep up my positivity and optimism.

That’s it for now. Take care of yourselves and each-other, and do take some time to enjoy life and the fantastic world around us.

-Ted

Greetings all! Yesterday I had the interesting experience of having my face molding done. The finished mold is a rigid mask that covers my entire face, wrapping around to behind the ears but not completely around the back. The mold is made of a heat-reactive plastic and is basically a mesh. I hope to get a picture of myself wearing it at some point, both to post and so I can see how scary and Hannibal Lecterish it looks. The mold will be used during my radiation treatments to ensure my head is correctly positioned, something that is obviously pretty important. The process of making it was quite quick and not really unpleasant at all.The next step will be a full CT scan of my brain, which will be done tomorrow. The radiotherapy machine requires a CT for guidance, but since MRI is actually a better tool for imaging the brain, they will be using some computer modeling to combine the imagery from my MRI’s with the CT scan to ensure they can target accurately. Fascinating stuff. The date for commencing treatment has not been locked down yet as there is quite a big of scheduling involved. I have mixed feelings; anxious to get started on treatment but still apprehensive about the affects of the radiation and chemo.

Right now I’m trying to enjoy feeling pretty normal. My head scar is healing quickly, and the main source of discomfort is itchiness. I’m definitely not used to having hair and look forward to the day I can shave again properly. Yesterday I didn’t need to take any Panadol, which is a great sign. I do still hear a strange crackling sound often, but the doctors told me that is just the sound of my skull knitting together and is normal.

Anyway, that’s it for now. Take care of yourselves and each other.

-Ted

Greetings all.

First off, I want to apologize for losing all the comments previously posted. I was having difficulty saving/editing this new post, and it turned out the problem was related to my last post. After much trial and error (which included deleting the existing comments, something suggested as a potential problem on the yahoo site) I finally found out it was related to the length of the post. It would have been nice if Yahoo had warned me, but there it is. I had to cut the last post in 2 and now will be much more careful about length. Sorry also for the frequency of posting, I’m hoping to ramp up to once a day by the time treatment starts.

On Friday 2 of my colleagues came by for a visit and a hang (Thanks guys!) which was really nice. Aside from it being great to have a bit of company (though trust me, I’m keeping myself well occupied and am not lonely at home) it was also good to talk about work and all the other mundanities of life. I never thought I would say that, but sometimes it does get tiring talking about my health. It was also great to hear from someone with a family member going through brain cancer treatment right now. While our cases aren’t the same, hearing that the side-effects of chemo and radiation have been pretty for her was yet another source of optimism.

Well, that’s it for today. I will be trying to get myself into an every-day posting pattern, though it may take a few false-starts to really get going. I will have another update tomorrow for sure, as I will have my head fitted for the brace they will use during radiotherapy, as well as possibly finding out if I am genetically predisposed to respond well to the chemo (keep your fingers crossed). Thanks again to everyone who has taken the time to write, I may be a bit slow on responses but I am trying to respond personally to everyone.

I have also posted a picture here that my mom took when I was almost exactly 48 hours post-op. I’ll work out how to post more pictures later. As always, thanks for being so supportive and remember to take a little more time every day to appreciate your families, yourself and this great, amazing beautiful world we all share.

Best wishes to all,

-Ted

Greetings to all of you around the world and I hope this message finds you well. Most of you already know about my situation, but for those that are not aware, this month after seeing a doctor about sudden headaches I was diagnosed with a brain tumor.In order to make it easier to keep up with what’s going on and how I’m doing, I have started a blog on yahoo which you can access at:

http://www.mrkrypto.com/blog.html

I just got it up, so please be a little patient with me as I figure out how to get it looking and working the way I want. I have added all the updates that I’ve sent out over the last 3 weeks, so anyone who wants to get a sense of the history can take a look. After this message, I probably won’t send out general broadcasts since the blog will be a better bet, and so many of you have written to say you care that it’s getting a little tough to keep track, a fact that truly warms my heart.

What a difference a day makes! Yesterday afternoon my stitches were removed and I was released from the hospital. The wound in my head has not healed yet, but it is nearly there and should leave me with a nice U-shaped scar with which to scare children and garner sympathy, depending on the circumstances. Being at home is an incredible relief and I slept a solid 10 hours last night, the first real full night of sleep I’ve had in weeks.

While coming home is good news, I have to confess that the results of my biopsy are less satisfying. I have been diagnosed with a type of tumor called a Glioma, and the specific diagnosis is Anaplastic Astrocytoma, Grade III. It is an aggressive, malignant tumor that is officially considered incurable, with a very low survival rate. I had my first meeting with the Oncologists on Tuesday afternoon, and will likely begin my treatment in about 3 weeks. The initial treatment plan will be 6 weeks of combined radiotherapy and low-dose chemotherapy (Temodar), followed by 6, 28 day cycles of full-strength chemo.

I have been told that Temodar is generally well tolerated, with fewer side effects and less probability of immunodeficiency than other, older therapies, so that’s some good news. All of my treatment will be done on an out-patient basis assuming al goes well, and the idea of being able to recuperate and face whatever challenges arise from the comfort of home is certainly appealing.

The doctors are also very open about discussing alternative and Chinese medicine, and I’m sure that my over-all treatment plan will at least include acupuncture and quite possibly some Chinese traditional medicine, though I will obviously confer closely with my doctors to avoid any conflicts.

I suppose the question some of you are asking is how I’m feeling about all this, and I can honestly say I feel about the same as I did before surgery. I remain optimistic about recovery, and while I am certainly apprehensive about my treatment and it’s possible side effects, I know in my heart that every new experience is an opportunity to learn more about myself and my place in this grand dance we call life. I cry at times, but as before the tears are more often tinged with joy and wonder than with fear and sadness. Every time I think about the outpouring of support I have received from so many of your all around the world it leaves me humbled and speechless and hopeful for the future of the world. How could a place with so many incredible people ever not turn out well. Yes, the world is rife with sufferings which make my own challenges fade into a whisper of insignificance, yet there remains a current of positivity and hope that time and again triumphs over all adversity. The world is a beautiful and magical place and each of us are privileged beyond measure to be given even an instant to appreciate it.

I’ll wrap up for now, as I want to have a bit of a rest and a read, and I don’t want to distract anyone over-much from the important things in life like friends, family and baseball (as much as baseball has let me down this year). I encourage you all again to take a little more time to enjoy the world around you and a lot more time to enjoy yourself and the magic and color that you uniquely bring to this fanciful collage called life. I will repeat again as well that if my situation inspires you to act charitably, I encourage you to direct your energies locally in your communities where they will do the most good.

I remain happy, optimistic, peaceful, joyous and hopeful, but mostly I remain your friend.

-Ted

Well all, I never thought I’d say this, but I survived brain surgery and all they gave me was this rotten scar.In all seriousness, I want to send my deepest and most profound thanks to all of those who have been pulling for me, praying, meditating, raising toasts or in any way sending me this incredible torrent of positive energy of which I am the recipient.

Knowing there were so many people behind me made it easy being wheeled in to the operating theatre because I never for a second felt alone. I felt blessed and fortunate before, and am doubly so now after taking this first important step on the road to health.

I know my mom has been sending out frequent updates to you all and want to thank her for keeping everyone update on my merry (and rapid) trip through the recovery room, ICU, the mysterious ‘level 2′ and now back to my normal ward, upgraded with a sea view. I feel a bit piqued to be sure, and I need to be a little cautious how I set my head down because of the stitches, but otherwise I feel none-the-worse for wear. Biopsy results will be in next week and I remain optimistic.

Tomorrow, Nicole will most likely bring my laptop and 3G card down so I will be fully re-connected, as well as having music to while away the hours. Once that is all set I have no doubt I will be fully of a mood to correspond and catch up. For my friends who are local, visitors are welcome as well.

Thank you all again for your support and friendship, with so many great folks rooting for me I have no option but to kick ass and take names and come back stronger than ever before.

Peace and thanks and see you all soon.

-Ted

Hi Everyone,

Well, Ted did it again.At 12:00 noon he was sitting up, and had all his IV’s, drains etc removed.

Tonight when we were visiting him around 7:30PM, he started to take a walk. The head nurse in the acute neurosurgical ward (C) stopped him and told us that they would be moving him to the ambulatory ward in about an hour. We asked if he could move now. When it was approved, he walked over 100 feet from the C ward to bed 8 in the A ward, his original ward. It is much quieter and he will definitely get some rest here. Last night he had trouble sleeping because of the other much sicker patients and because of all the drains and IV’s he had. He did not want to disturb anything. However, he rested well after we left at 1:00 PM.

Ted was happy to be back in the A ward. He has a window that looks over the city of Hong Kong and part of the ocean. I feel that he is definitely much improved.

Lee and I leave tomorrow so I doubt I will be emailing everyone again. Ted asked for his blackberry which he will get tomorrow and I expect him to start sending his own emails out.

The first hurdle appears to be over. Thanks to all for your support, love, prayers and positive thought.

Alice, Lee, John, Nicole and Ted Chapman

More Good News.

I knew Ted came from strong stock but did not know how strong until Lee and I got back to the hospital tonight at 6:20 PM. Nicole met us and told us that Ted had already been moved out of ICU and into the neurosurgery sub-acute care ward. He will be there until all the drains and other tubes except the IVs are removed. Then he will move back to the neurosurgery ambulatory ward.

Nicole, Lee and I were at the hospital for about an hour before Lee and I left. Ted feels extremely blessed to have survived this phase and is generally upbeat, cheerful and claims to be extremely happy. He passed all his strength tests and several cognitive tests – in both English and Cantonese – so we are all extremely pleased.

As soon as possible he will respond to all those individuals who are sending him good wishes. He does not have access to either his blackberry or his computer and will not for a few days probably.

I will continue to update you after our visits to the hospital.

Nicole, Lee and Alice thank you for all your good thoughts. Now my tears are tears of joy.

Thanks for being Ted’s Friend.

Alice, Lee, John and his wife Julia, Ted and Nicole

Good News -Ted had surgery this morning. It started around 8:00 AM Hong Kong time. We got to the hospital around 10:00 AM. The nurse called Nicole to tell her that Ted was through surgery and doing well at 1:30PM and he was transferred to the ICU around 2:45 PM. We got to see him at 3:00 PM for a few minutes. He was awake, lucid, could move all his extremities and could remember his 3rd or 4th grade year at school as well as the past few weeks. He recognized all of us. John was able to see him and see that he was clearly doing fine.

Ted even claims that his Cantonese is better now. Go figure. Anyway, as Ted said, and I quote. “I’m too stubborn a bastard to not get completely well!”

Lee and I will go back to the hospital tonight and several times tomorrow. We will see him Friday before we head back to the states. John heads back tonight.

Keep your prayers coming that the biopsy comes out good.

Thanks for all your good wishes.

Alice, Lee, John and Ted – as this is being sent at his request.

Greetings all and best wishes to each of you! Due to the person ahead of me being determined unfit for surgery, I’ve been moved to the first slot tomorrow morning and will start around 8:00AM. The next couple days will be a bit hectic, surgery in the morning, then to ICU probably for a day, then to a high-staff room for a couple days before getting back to a normal room for whatever period of time follows. It’s all on the same floor, but given all the motion I will likely be without computer or most other accessories for a little while at least. Someone will send an update to the list once I’m through surgery and OK so you’ll all know as soon as possible.I remain optimistic, positive and ready for this next step in my life. I’m nervous of course and a little scared, but I have faith in the surgeons, in the hospital, in the support of all my friends and family and mostly in myself. I know that I will come through stronger and less afraid of whatever follows on after. For those who want to get the clearest picture of what’s going through my mind, I suggest listening to Lou Rawls Greatest Hits; I know it sounds cheesy, but a more positive hour or so of recorded life may not exist. I am sitting here in my bed thinking about all the Groovy People out there, and believe it or not I’ve got a smile on my face. If I wasn’t trying to follow doctors orders I’d probably be dancing, and for all those who know me, you know what that means.

Thanks for all the truly kind, warm, generous, inspiring and uplifting words you have been sending me the last couple of days. Each message is a reaffirmation that even when things seem wrong, in truth and at the heart of things all is well with the world. I found myself crying last night, not tears of fear or sadness or loss, but those tears of joy that come unbidden and uncontrollably in the cool of a desert night under the stars when all the universe bares it’s soul and lays plain the wordless and indescribable truth. In the words of Earth Wind and Fire, ‘I just wanna pay gratitude!’.

I will speak to you all soon, and look forward to facing whatever challenges lay waiting, knowing that as the dust and grime is stripped from my soul a new canvas is unveiled to paint a bright and festive future.

Best and warmest wishes to you all and to your families and friends, I remain humbled by the knowledge of your presence in this world. So try not to worry, knowing what I know today about the world, there is no way I’m leaving any time soon.

-Ted

Hey there everyone, I wanted to send out an update on progress, status, etc. as things move forward. This email is a bit long and sorry about that, but I know a lot of folks are interested in the details and want to do their own reading on the subject, so I want to provide as much as I can.Firstly, let me say I really appreciate all the kind sentiments and connections from afar. Reading and responding to all of your messages has been fantastic and just serves to remind me ever more about how connected we all are and how durable those connections truly are. Don’t feel pressured to write in any way, nor pressured to respond to everything I write either of course, what I want more than anything is for everyone to be and do what is right for them. I just wanted to emphasize that I deeply appreciate all the sentiments spoken and unspoken and across the gaps of distance I KNOW you are all there.

Ok, so for the details. Yesterday we met with Dr. Pu to go over everything and give my family an opportunity to ask questions/understand. For those with a medical bent who are interested, I have posted both the original MRIs and MRI report and the MRS on the web at http://mri.mrkrypto.com/. Not fancy by any stretch, but for those who are curious they can take a look.

I have 3 lesions, which as I understand is what they call it when they are not yet sure exactly what it is. Based on the shadows in the MRI, the peripheral tests (e.g. no immune deficiencies, sign of infection or indicators of additional activity) and the MRS, all signs point to a Primary Brain Tumor. Primary just means it originated in the brain rather than metastasizing (sp?) from somewhere else. As I told many of you, it is in the left side at the ‘posterior parietal and occipital lobes’. The lesions have caused ‘moderate mass compression’ (that means they are squeezing things around a bit) of the ‘occipital horn and left lateral ventricle’ (the ventricles hold cerebral fluid). The compression effect is the source of the symptoms I experienced that caused me to first go to the doctor 2 weeks ago (headaches, funny flashing lights in the visual field, dizziness). There is also indication of edema, which as I understand means that at least part of the tumor is rich in blood vessels. Indications are that the tumor is aggressive (which I believe just means that it is growing), most likely because it has tapped into said blood vessels and has a rich supply of food.

The surgeons here will perform a craniotomy on Wednesday afternoon in order to collect samples for a biopsy. The goal will be to minimize the duration and scope of the operation and as soon as they have sufficient tissue to be confident in later diagnosis they’ll be out. They will not try to remove mass, or “de-bulk” as they are 100% focused on not doing anything that would endanger my cognitive function. The risks are the same as any major surgery, bleeding and infection, but they are pretty small and it’s probably statistically as dangerous to cross the street in Hong Kong as it is to have these experts mucking about in my brain. The only concern I really have is no one will explain mineral rights to me and I want to make sure if they discover gold, diamonds or oil I won’t be hit by any claims of imminent domain.

If all goes well with the surgery, I could be up and about within a day, and certainly I or someone else (in case I don’t have access to the Internet at that time) will send a message letting everyone know. After the surgery, it will take about a week for analysis and diagnosis before I really know what I’m up against. As Dr. Pu said, this is the type of procedure they perform here every day, and given I am young, healthy and have the right attitude she is extremely confident. I am 100% sure I will come through fine. I just hope there are no microphones to record whatever I might babble under anesthesia.

For those not aware, I am at Queen Mary Hospital here in Hong Kong and it is the best spot in the region for neurosurgery. It is a public teaching hospital associated with the University of Hong Kong and has all the most modern equipment. The fact that it is public also makes it cheap (since I’m an HK resident), and really feel good about being in a teaching hospital where my experience will more directly help others in the future.

So that’s where I’m at in as much detail as is worthwhile. Mentally and emotionally I remain calm, optimistic, scared and grounded. All the ‘worst-case’ preparations are now over (will, benefits, legal stuff…) so that minor stress is gone and I and all those who I know are behind me can just focus on recovery. I am touched beyond words at the outpouring of kindness and good wishes that you have all sent to me.

This week-end I am hoping to get out of the city a little bit and take a walk in the woods somewhere (surprising to many, most of Hong Kong is really just wooded hills) with my family or maybe go down by the beach. I will be back in the hospital starting Monday AM so that I have a bit of time alone to focus and prepare my own mind for this next step. As I have said to many, I firmly believe that my recovery rests as much in my own mind’s willingness and ability to fight, endure and find its own path to recovery as it does on the expertise and technology of medicine.

I will continue to write and share my experiences and feelings and thoughts as I find it massively comforting, and the volume of memories that keep coming back to me is as visceral a reminder of the power and durability of the mind as anything could ever be. I have said and will say many times to come, I know you are all pulling/praying/hoping/wising for my recovery and feel it in every fiber of my being.

Lastly, I’ll repeat that if my experience moves anyone to make charitable donations, I would encourage you to give locally to the people in your communities, or to give to causes that affect us all such as global warming. I was really pleased that Al Gore received the Peace Prize yesterday and hope that all of us can wake up and recognize that we will see events in our lifetimes that are of far greater impact and scale than anything that is happening to me. I’ve been woken up recently to this great, beautiful world around me and hope each of my 6 million room-mates can as well. Nothing is inevitable.

Love to all and best wishes; stay positive and share.

Ted

Hey all, given I am a little distracted and can’t get to sleep I figured I’d send my own update, since the cat’s out of the bag so to speak.Yep, I’ve managed to grow myself a doozy of a brain tumor somehow. In truth, it’s not 100% certain to be a tumor and the official MRI results indicate possibilities of either primary CNS tumor, primary CNS lymphoma or intra-cranial infection. Given I show no signs of infection or the type of immune deficiencies that would be expected with lymphoma, and given the nature of the shadows in the 2 MRI’s I’ve had, tumor is the most likely reality. As my mom says, we won’t know until after the biopsy what exactly is in there, whether it is malignant or what not. The location is left side, and it is in the form of 3 lesions with largely uniform structure covering more area than anyone would like. If anyone wants to see what this looks like, they can contact my mother and she can send a link to where the scans are posted on-line. Because of the size and location, it is unlikely to be operable, but for now I just don’t know and can only wait and see.

For my part, I am scared of course, particularly at the prospect of losing my mental facilities, which is much more frightening I think than death. At the same time, I am in many ways happier than I have ever been because this change has given me a whole new perspective on life. I am not feeling bitter or angry, I just feel incredibly lucky to have lived the life I have thus far, known the people I have known and seen the changes I have seen. I find myself believing more than ever that the world, for all its flaws, is an incredible, magical, beautiful place and we are all fortunate beyond measure at all times. I know to some of you I was not a good friend at times, but youth is fickle with wisdom, and only in the mirror of adulthood do I see the many truths that lie before me. I hold no anger or malice in my heart for anyone today, and hope that all of you can see me in the same light, just another flicker of creation wandering wind-blown through a path of learning and discovery.

I believe that I can recover, and am specifically refusing to ask the doctors about my chances at this point. I’m not in denial, but a close friend who survived aggressive brain cancer himself said a little tactical denial really helped him get through and I am not to proud to take good advice from the seasoned veteran.

My close friend Jody Platt has set up an email alias which I will use to send out updates as things progress. She would be happy to add anyone who wants to be included, just send her a message at plattgarcia@gmail.com and she will get you on.

Guess that’s it for now. I’m in good spirits and calm, though lacking a bit for sleep just today. Cherish your friends and family, waste no time on the petty hassles of the world and enjoy this incredible, beautiful, joyous universe of which we are all a part.

-Ted

Hey everyone, I wanted to keep you all up to date on how I’m doing and what’s going on.First off, I appreciate beyond words all the kind messages and thoughts that you are sending my way. I can truly feel the positivity and it means just a tremendous amount to me.

As far as my body is concerned, I am not currently in any pain and am on both anti-convulsives to prevent, well, convulsions (my headache attacks were likely pre-convulsions of a sort), and a steroid to reduce swelling in my brain (so I’m going to get pumped-up as well!). I seem to be a bit of an enigma to all the doctors since all the cognitive and physical tests so far have shown virtually no impairment even though the growth is quite substantial.

I am at home on home-leave right now and have been since Friday evening, so I’ve been able to spend a bit more time with family. I will be back in the hospital tomorrow afternoon following my next MRI, which will be an MRI Spectroscopy. The goal of this test is 2-fold, to get a sense of the chemical composition of the tumor/growth and also to determine the rate of growth. It is possible that if the tumor is not growing and the chemical composition is not to gnarly, they will try to treat with medication alone. If not, they will perform a biopsy sometime towards the end of next week. After that we would know exactly what is going on and be able to plan a full strategy.

Many of you have asked about visiting me, and while you are welcome to do so if you truly want to, it really is not necessary. When I’m back in the hospital I only have a few hours of visitor time a day, and given the uncertain nature of my status, it’s not the best bet. Again, I know my friends are a stubborn lot so I will not tell folks not to come, but it really and truly is not necessary. If you want to send a card or something, the address here is:

7th Floor A, bed 13
Queen Mary Hospital
102 Pokfulam Road
Hong Kong SAR

The hospital website is: http://www3.ha.org.hk/qmh/index.htm

Don’t send flowers please, since while nice they are not the most sanitary of items in a pre/post surgical ward. Also, some folks have asked about donations/charities. If my situation inspires you towards generosity, please give where it will do the most genuine good, either give locally in your own communities or support groups fighting global threats of pollution and warming, whose impacts are far more meaningful to us all.

The doctors, nurses and med students here have all been very nice and over-all I am in good spirits. I am clear and calm in my heart and mind and just focusing on the challenges ahead. From my bed here I can see out the window to a hill-side, and on the top of the hill there’s a sort of pavilion with a steep staircase running up to it. When I look out, I can see those stairs and I think about the time when I will climb up and look down at this very same window and send my own hope and best wishes to whoever is lying where I am now.

I want you to all know that I love each one of you, and if nothing else I feel truly blessed by all that with which this world has seen fit to gift me. I look now at so many stupid concerns and petty grievances that I have felt and have seen them in an instant melt to nothingness and less. The universe that surrounds us every day is a miracle, whether intended or accidental, and we should all take the time when we can to ponder that fact, to appreciate each other and this great and infinite gift we all share.

Love to all and see you all soon.

-Ted

Over the last few months I have had several severe headaches, which I had hoped were merely migraines. I saw a doctor and had an MRI on Friday, the results of which I received last evening. All day today I have been meeting with specialists and in an hour or so I will be admitted to Queen Mary hospital here in Hong Kong. The scan has detected a relatively large tumor on the left side of my brain; most likely it has been growing for many years, perhaps 20 or more. For whatever reason it has recently become more aggressive, hence symptoms have been appearing. I will have an additional test probably tomorrow to try to determine the composition of the tumor and we are hoping for the best. I will need surgery and other treatment and have no idea how long it will all take.Nicole and I are remaining optimistic and I am 100% committed to beating this thing, whatever it takes. I will try to set up an email alias for everyone, though I could use some help with that from a technically minded person if at all possible. The hospital I am going to is the top public hospital in Hong Kong for neurosurgery, so I will get the best of possible care.

Please think good thoughts and send good wishes, I am looking forward to seeing you in December when I hope to be well through my recovery and just as obnoxious as ever.

Sorry to bring bad tidings via email, but I wanted to let folks know and with time differences and the need to head to the hospital this is the best option.

Much love to all

-Ted