Update and USA visit news – Sat, 12 Apr 2008

April 16th, 2008

Family Picture w. Jody

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

Sorry for the silence – Mon, 7 Apr 2008

April 16th, 2008

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

Treading water – Mon, 17 Mar 2008

April 16th, 2008

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

Happy leap day – Fri, 29 Feb 2008

April 16th, 2008

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

Starting 2nd Chemo Cycle Tomorrow – Fri, 22 Feb 2008

April 16th, 2008

Greetings all, tomorrow I will start my second cycle of chemo. Because my liver function is now completely normal (touch wood), I’ve been cleared to move up to the maximum dose and will be at 440mg. The doctors have also given me a couple different drugs for nausea, so hopefully this round will not be as bad on the side effects. I’ll have an MRI next week, so everybody keep your fingers crossed for some sign of improvement. I believe I am getting better, and if all my friends and family do as well, I know I will recover.

-Ted

Hello all – Wed 13 Feb 2008

April 16th, 2008

A slightly more energetic posting for today as compared to the last one.

I’m almost 3 full weeks through the first chemo cycle and (touch wood) am now feeling relatively normal. If the pattern follows, it looks like each cycle will have one miserable week, 2 recovery weeks and one fully-functional week. Friday I will also see the Chinese medicine doctor, who may be able to help recover more quickly each cycle, and I may get better anti-nausea medication starting the next cycle. If both of those things work out it will be all the better.

I also have my next MRI scheduled for the 4th, which could be quite an experience because I will be in the first week of recovery from the next chemo treatment. This will be the first real opportunity to judge my response to both chemo and radiation, so everyone keep your fingers crossed. That’s enough medical updates.In other news, I’ve been meaning to send out the link below for a while. It’s a video that my friend Edith put together for me that has really helped me get through the first round of Chemo. I watch it again every time I’m having a bad day and it both makes me cry and cheers me up.

http://youtube.com/watch?v=gvWzbY6CgAg

To Edith and the other folks who helped put it together, I can’t thank you enough.

-Ted

Gung Hai Fat Choi! – Fri, 8 Feb 2008

April 16th, 2008

Well, it’s been a while since I posted and very busy as well.

2 weeks ago I started the new round of chemo. My old dosage was 160mg and the new dosage is 340mg, which is a big difference for side-effects. I was completely flattened for the 5 days I was taking the chemo and have very slowly been recovering. It’s been 2 full weeks now.Of course, nothing can ever be easy and we moved at the same time. Actually, Nicole and the movers moved while I tried to sleep and not think about the nausea. The new place is a lot smaller, but it is quieter and cleaner, and the air is better by far. It is going to take a long time to get used to the size, but it should only be for a year if all goes well.

I will see a Chinese doctor from another public hospital next week; Queen Mary has no Chinese medicine clinic so we can’t go there. The doctor will hopefully help with the nausea and other side effects and I’ve got my fingers crossed.

That’s it for my energy for the moment. Hope you are all well and happy new year!

-Ted

Ah, shaving! – Mon, 14 Jan 2008

April 16th, 2008

Hello again to all my friends and family.

I am happy to say that this week-end I met another milestone; I was able to properly shave (alas, not my head yet) for the first time in 2 months. The radiation weakens the skin and makes it much easier to cut/tear, while also slowing the healing process. Now that I’m 2 weeks past radiation, those side effects are pretty much gone. While inconsequential in the greater scheme of things, having a clean shave feels really good.

It was a busy week on the medical front, with a Tuesday MRI, Friday Oncology consult and Monday meeting with Dr. Pu. My blood continues to improve and was almost normal as of my Friday tests, and it looks like I will be on-target to start the next cycle of chemo on the 26th of January. We are also going to step-down the anti-seizure drug over the course of the coming week to see how I do without it. Obviously we will monitor carefully, but the doctor’s opinion is that given I’ve had no seizures while the drug level has been at a sub-therapeutic level it should be safe.

My MRI results were very similar to the pre-surgery ones, which I can view as a positive since it indicates there hasn’t been significant growth (it will be a few months before radiation effects should start showing up). I told Dr. Pu that I didn’t really believe it myself, but I felt like my visual field had improved, and her quick test showed it was normal, so maybe that’s a positive indication as well. On a more shallow and vain angle, I asked her to evaluate the healing progress for my head scar and she thinks it is going extremely well and totally normal. So, on the medical front there’s a lot of reason for hope and optimism and I’m focused on that. Good news for me.

As for the rest of my life, Nicole and I are busily looking for our new flat. It looks like we’ll be trading size for quality and may end up in a nice but tiny 23rd floor flat with a harbor view. It will take a little time to get used to such a small place, but I think it will be a fair trade in the end, and will definitely be better than where we are now. The latest development in my little hell-hole of a flat is that all the pounding, jack-hammering and drilling down the hall is transforming the unit from residential flat to some sort of commercial enterprise. Given the other enterprises in the building, I don’t really want to know what’s coming. Escape at this point is critical.

Well, that’s it for now since I need to get a bit of sleep. I hope you are all well and have fully recovered from whatever travails holiday travel may have handed you.

Take care of yourselves and each other.

-Ted

Back in business – Sun, 6 Jan 2008

April 16th, 2008

Well, seems my surreal little side adventure has run it’s course for the most part. Yesterday when I got to the hospital the doctor told me I had been cleared by the hematologist and that I was being released; they didn’t even take blood. As of my Friday test, liver function was continuing to improve and the consensus of all concerned was a drug reaction to the anti-nausea medication, something none of the doctors here had seen before. Maybe it is a gwai-lo-specific reaction.

Regardless, I’m back home and down to only one medication (anti-seizure) and feeling pretty good about that. Physically I feel the best I have since before I had my first headache, though of course I haven’t been running all over Hong Kong chasing crazy customers. I’m sure that will come soon enough. Next week I will be able to have a proper shave of my face for the first time in almost 2 months, which I am looking forward to immensely.

This month could be a bit busy. Nicole and I want to take advantage of the treatment break to find a new flat, ideally one that is a bit quieter with better air. I also need to sit down with the folks at work and put together a plan for getting back. I never thought I’d say it, but I’m looking forward to working again. Of course, I’m a long way from out of the woods with the brain tumor, but I feel optimistic and I think getting back to some normal activity will be good for me.

Thank you again to all the people who have sent gifts and cards and made donations in my name. I will try to write to everyone as best I can, but if I miss you I apologize in advance.

That’s it for now. Happy New Year to all and do try to enjoy your time with friends and family as much as possible!

-Ted

Happy New Year from the ‘deranged’ – Wed, 2 Jan 2008

April 15th, 2008

Happy New Year all and sorry for the delay in updates!

Well, as usual I roll through the waters of the surreal. Last Friday I went in for my routine blood test along with the second-to-last radiation treatment. I was pretty up-beat and excited to have one more treatment and then 4 weeks of no chemo, no radiation, no nothing. Of course, nothing can go smoothly all the time. Friday evening the doctor called me and told me the blood results showed that my liver was ‘deranged’. I kid you not, that is the term they use here. The blood doctor told me to come in on Saturday morning and have more blood drawn before my last radiation treatment. After my treatment (Yahoo! finished radiation!) the doctor told me again that my liver was deranged and I was immediately admitted to the hospital (boo!).

They’ve been letting me out every night on home leave but I need to be back in the hospital each morning for them to draw blood and wait for the results. At first they were afraid it was hepatitis (which would open the question of how the hell I could have caught it), but now the consensus is leaning towards a drug reaction. Given that last week I was switched to a new anti-nausea drug that seems a likely candidate. My blood’s been getting better daily, and I feel completely fine (though bored in the hospital). The doctors are shaking their collective heads because they’ve never seen someone have this type of reaction to that drug, but I guess it’s my job to provide them with new opportunities to learn and grow.

Anyway, I’m at home right now waiting for my parents to come to meet us for dinner. Did I mention that I was admitted to the hospital while they were in the air on their way to visit for a week? Again, I guess the lords of irony and mischief wanted to get an extra work-out. I don’t hold it against them; it is their nature after all.

Right now I feel pretty much fine and am looking forward to getting fully cleared at the hospital and enjoying my 4 week break from treatment. I’ve received a mountain of cards from folks and I want to say I really appreciate each one. The constant stream of good wishes does wonders and helps me keep focused on recovery. I hope all of you had a fantastic Christmas and New Year, and that you are feeling positive and optimistic about 2008. There’s a lot of opportunity in the air now, and 2008 is providing the world with a lot of opportunities to get our act together.

Thanks again for all your support through the past months and all my love to you and your families. Enjoy the world and think positive thoughts as often as possible!

-Ted

Ready for the last week! – Thu, 20 Dec 2007

April 15th, 2008

Hey there all. I had my weekly consultation with t he oncologist yesterday and all remains good. My immune system has not degraded (touch wood), and the side-effects continue to be relatively mild so I’m on to the final week next week.Today I learned that I probably won’t have treatment on Christmas day, which if true will be really nice. I haven’t figured out the exact schedule yet, but it appears my last session will be either Saturday or Monday.

Right now I’m looking at a stack of cards and gifts and feeling really guilty about not responding/thanking all the folks who have corresponded via the mail. I am thinking about you folks and promise to write appropriately as soon as my energy level is back up (after radiation is done).

The next step for me will be beginning my pure-chemo regimen. During this next phase I will be taking medication 5 days out of every 28, with a dose 2-3 times higher than what I’ve been on. I think it will be a 5-days-on 23-days-off schedule and I’m hoping that I will respond well (obviously). I’ve recently heard about a patient with the same genetic marker as me who is now 10 years in remission (knock wood), which gives me even more hope for my own case. I’m also looking forward to working again, even if it’s only part-time to start.

Thanks yet again to all of you for all of your support and positive vibes these few months. I cannot say enough how much it means to me and how much strength I take from it. Any time I am having a bad day or thinking negative thoughts I think about all of you and it’s easy to keep going. I hope each of you is geared up for the holiday season(s), and that you are taking the opportunity to reflect on how lucky we all are to have whatever we have and to share this amazing world.

Love to all

-Ted

On to ‘phase 2′ radiotherapy – Tue, 18 Dec 2007

April 15th, 2008

Hey all, I am trying to update a little more often but we shall see.I started ‘phase 2′ of radiotherapy on Tuesday, though it doesn’t mean much to me really. They will be focusing the radiation differently moving forward, but for me I still do the same thing. The only noticeable difference so far has been that the last 2 days after treatment I have been really sleepy. I didn’t feel sick today, just sleepy, which I suppose is a fair trade-off.

There’s nothing else much to report. I am excited to be more than 2/3 done my radiotherapy and looking forward to closing out this course and moving on to the next challenge. So far so good!

Happy Holidays!

-Ted

Halfway through! – Sun, 9 Dec 2007

April 15th, 2008

Well folks, I’ve now finished 3 full weeks of treatment, which means that when I wake up tomorrow I am officially half-way through this part of my treatment!

It definitely feels good to be half through the radiation, though last week was a little rough on the nausea front, hence no posts until today. I think my biggest complaint at this point is that the side-effects are so inconsistent and unpredictable. During my second week I felt pretty much fine, then last week I honestly felt like crap. The one happy consistency is that I feel well over the week-ends when there’s no radiation treatment. I guess I can also be grateful that nausea is the worst I’ve had to deal with at this point, as I know cancer can be a lot worse.Hitting the half-way point in this leg of treatment has certainly made me reflect. It’s hard for me to believe it’s only been 2 months since the first diagnosis; time has definitely slowed down immeasurably. Most of the time it feels like a gift, leaving plenty of opportunity for reflection. Of course, there are the days when the radiation has left me feeling like I drank a gallon of cheap tequila. Those moments I’m less excited to have extra time to ponder the beauty of life.

Even at those moments though, I can look back on experiences that at the time seemed irredeemable, and yet in hindsight are some of my best (and maybe funniest) memories. I’ve been thinking a lot about India recently, and can’t help but remember my first trip there in 1996. At the time I was traveling with my friend Harry but we had decided to split up for a bit. He wanted to go South and I wanted to go North, so we decided to split up and agreed to meet up at a specific day in front of a famous temple in Puri. Of course, at the time we didn’t know that it was one of the 4 holiest temples in all of India, with tens of thousands of people visiting every day.

The day before we were supposed to meet I was in the city of Bhubaneshwar after visiting the ancient temple of Konark (please excuse any and all spelling mistakes folks). This night I hit the one bought of ‘Dheli belly’ with which I have been cursed in all my travels, and it was a whopper. I won’t go into details of that night, but will say that it was measurably worse than anything I have experienced since, including all my current treatment. Waking up the next day, I knew I needed to get from Bhubaneshwar to Puri to meet up with Harry. After the previous evening I felt absolutely spent, and all I wanted was a simple, easy trip. Those who have traveled in India can imagine how that went.

I decided to hire a taxi for the trip (about US$15) since I felt like absolute death, and after getting the taxi and paying my hotel bill I was off. All was well, and I was enjoying traveling through the tropical countryside of Orissa when the driver stopped. I looked out and there was a line of other vehicles all stopped in front, and when I asked the driver what was going on he only replied ‘Student strike’. After waiting for 10 minutes I got out and walked up to see what exactly was going on. I then discovered that a ’student strike’ involves a group of 10-14 year-old girls pulling their classroom benches across the road, completely blocking it right at a bridge. Aside from the signs the girls had put up on their benches, there was no indication of what was going on (no changing or singing or anything like that).

Soon it became clear that this was a long-term situation, and I began to worry about my meeting with Harry, especially since neither of us had any way of getting in touch. I went back to the taxi and asked the driver if there was another road and he of course said no, there is no other road. I then, in traditional Indian style, asked if there wasn’t a special road and the driver informed me that yes, there was a special road, but it required a toll. After some quick negotiations we settled on 200 rupees (at about 35 to the dollar) to take the other road and I thought all was well. After handing over my cash, the driver proceeded to turn off the road and, ignoring any protests on my part, drive off across the dry, red-clay fields. We drove along for something like an hour across fields with no sign of a road, and I was starting to get concerned when we finally hit the roads on the outskirts of Puri (my destination). I can hardly describe my joy as I passed the sign for the temple where Harry and I were planning to meet with minutes to spare. Given that I had spent the night convinced I had cholera (and still felt physically devastated), and had just had a somewhat terrifying ride across rough terrain in an Ambassador, the relief of arriving at my destination was immeasurable. Of course, those who know India know it doesn’t end there.

The taxi stopped in front of what looked pretty much like a riot but was in fact a normal day at the temple. As I said, it turned out this was one of the 4 holiest sites in India (a devoutly religious country to begin with), and it was a festival day to boot. When the taxi driver told me to get out I found myself standing in front of what looked like about a million people crowding around this temple. As people began to notice me, they began to take a uniquely India interest in me (which I had gotten used to already) and crowded around me (personal space is not a reality in India) staring. Imagine tens of thousands of people compressed into a small (relatively) square in front of an ancient temple, with you trying to wander through and find one other person in the crowd, while carrying a big backpack and suffering from a night of dehydration and nausea. Not a great day.

As I began to wander aimlessly towards a more-quiet corner of the square, I suddenly heard my name called out. I turned around, and there about 100 feet away and just getting ready to leave (thinking I had not come to Puri at all) was Harry. Within half an hour I was checked into a great little hotel near the beach that Harry had been staying in for a few days, and had the best meal I had in all of India that evening.

That is a normal day in India.

I guess the reason I tell that story is that I often think about that day, and a hundred other horrific and glorious days traveling around the world (ok, especially in India) where the world hands you an inconceivable combination of pain, sickness, confusion, beauty and joy. During those days, I’ve had plenty of opportunities to curse my existence and whatever creator or creators have played a part in my life. Yet each time when things seem the bleakest and most painfully surreal, somehow just by sticking it out, by digging in and holding out for the inevitable pay-off, I end up having the greatest experiences of my life and making the greatest and most vivid memories. Whether it was that day from Bhubaneshwar to Puri, or getting lost on my own in the mountains outside Pokhara, or fighting brain cancer, those experiences give me the certainty that everything works out in the end if we just allow it. I guess that’s all any of us can ask for.

Best wishes to each and every one of you as you face all the challenges, big and small, in your days; I hope you find a little India in you as well.

-Ted

-PS I encourage anyone who has had a tough travel experience that turned out to be one of the best experiences of their life to tell everyone about it by leaving a comment right here on this page.

2 months down! – Sun, 2 Dec 2007

April 15th, 2008

Well, once I take my chemo today I will be 2 full weeks through my treatment!The headaches have been few and over-all I’ve been feeling pretty good, especially on the week-end when I don’t have radiation. Sadly, because my life has been pretty boring the last week I don’t have much more to say today. I’ll try to give a better update on Tuesday after I get my next blood work back.

Best wishes to all!

-Ted

One full week done – Tue, 27 Nov 2007

April 15th, 2008

Ok, in truth it’s been more than a week since treatment started, but close-enough.

Each week I need to have blood drawn to see how my immune system is responding to treatment, and that is done on Monday. The following day, after the blood tests have been done, the doctors will see if I am healthy enough to continue my full treatment. So, today I got back my blood tests, which came back normal, hence I was given another week’s worth of chemo drugs and will continue my full treatment.

I’ll admit that the process makes my Tuesday a bit hectic, and it seems like not all the doctors are on the same page (the oncologists and the radio therapists don’t have the same opinion on whether the chemo drugs really need to be taken 1 hour after the radiation), but it all does seem to work.

Today I learned some minor disappointing news, though not related to my actual health. I asked the oncologist during today’s consultation when I would have my next scans, to see whether the radiation had helped, and learned that I won’t know for a few months. It seems that the radiation takes a while to do it’s work, hence it will take a while before we see if progress is being made. Again, not really bad news, I guess that patience is a big part of fighting cancer. On the equally unimportant but positive side, I learned that my hair will start falling out in another week or 2, which will save me a lot of itching and aggravation.

I also ran into Dr. Pu today while headed to my radiotherapy. She asked how I was feeling and seemed pleasantly surprised to find out I have not been put back on steroids (touch wood). I hadn’t thought of it before, but it seems that most people would have needed to be put back on steroids to avoid swelling by now, so I’ll take that as a good sign. My next official meeting with Dr. Pu will be on the 10th, and then she will take a look at my scar healing.

I’m feeling pretty good today. Yesterday after treatment I had a nasty headache (the reason I did not make a post yesterday), which I learned is common at this point, however today has been pretty good. Nicole made some delicious soup and I am doing my best not to eat it all. I need to be careful not to eat too much so that my radiotherapy mask will fit right. Trust me to go on radiation and chemo therapy and then actually gain weight; I guess that is another good sign, or at least I’ll take it as such.

Well, that’s it for me today. Land of the Dead is about to start on cable and I want to see just how much the censors here cut it, not to mention that zombie movies go with brain tumors like Ritz crackers and eazy-cheese. Hope all is well in your worlds today and that you all had a happy thanksgiving.

-Ted

Happy Thanksgiving – Thu, 22 Nov 2007

April 15th, 2008

Greetings everyone, and happy thanksgiving!

Today has me feeling a bit better; maybe I am beginning to get a sense of what life under treatment will be like (touch wood) and it’s not too bad. The combination of radiation and chemo (though they say it’s more the radiation) definitely has sapped my energy pretty significantly, to the point that once I am finished a radiation treatment all I want to do is sleep. I’m not sure if the tiredness and slight nausea is worse, or if it’s the dry skin. The radiation makes the ‘affected area’ (my head) dry and itchy, and I really am not allowed to scratch as it is too easy to break the skin.

To make matters worse, I’m only allowed to wash extremely gently, no rubbing, and I still don’t know the rules are on shaving. For someone who has been without hair on both head and face for more than 10 years, it’s a minor annoyance that is a serious pain.I’m also going to speak to the doctors about my headaches, which seem to be getting a little worse. I think it is swelling, in which case they will probably put me back on steroids. The reason I think it is swelling is that the position of my head seems to have an affect; when I lie on my right side (hence, blood is flowing to the right side away from the tumor) I usually feel better. Also, I feel the throbbing synchronized with my pulse, which tells me it’s clearly related to blood flow. Of course, I’m not a doctor so the next step is to discuss with them.

So today is Thanksgiving, which of course has me thinking of all my friends and family around the world. I thought that I would be feeling really bitter, if for no other reason than that I don’t get a decent turkey dinner, but really I am not. I am thinking about all the great folks I know who have been writing to me, sending me packages, visiting and just thinking about me, and thinking that just knowing all of you are out there is the best thanksgiving I could have (short of a sudden, miraculous recovery of course). I do feel a little guilty for not being on top of my correspondence recently; I really will try once I get a bit more used to my treatment schedule. I’m definitely looking forward to the week-end when I won’t have radiation treatments; hopefully the chemo on it’s own won’t leave me quite so worn out.

I have to admit that my optimism over the last couple days has not been as high as before. I guess it’s natural to have good days and bad days. Starting treatment is a double-edged sword in that I am optimistic because finally I am making positive motion towards recovery, yet at the same time I have to admit the reality of my illness in a more visceral way. While I was waiting to hear, and feeling mostly normal, it was easy to forget my condition, but every treatment now reminds me that I have a pretty nasty disease with a generally poor prognosis.

I don’t say that to dwell on the negative, but it is important for me to accept the reality of my situation if I am to face it and fight it. All this is not to say that I am giving up or have lost hope. Even though I know my odds are poor I still believe I can survive; sometimes it’s just easier to believe than others. As I say, treatment is a double-edged sword because the mental and physical energy that’s required to fight also serves as a reminder of what I am fighting; it’s all very Shakespearean.

Anyway, I don’t want to dwell on the morbid since it doesn’t make me or anyone else feel any better. I’m feeling ok today, and if the doctors can do something about the headaches all I will really have to complain about will be a little nausea and some dry skin. That’s a lot better than some hangovers I had in my ill-conceived youth. I do want to wish you all a happy thanksgiving, and hope everyone takes the time to share with friends and family and really reflect on all the blessings you have. Drink a glass of wine for me, eat some turkey and pumpkin pie (or whatever animal-protein alternative you prefer) and have a happy Thanksgiving.

-Ted

1st post-treatment report – Wed, 21 Nov 2007

April 15th, 2008

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

Night before first treatment – Sun, 18 Nov 2007

April 15th, 2008

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

Treatment starts Monday – Thu, 15 Nov 2007

April 15th, 2008

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

Still waiting… – Sat, 10 Nov 2007

April 15th, 2008

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