Albert in Bryce Canyon

Albert in Bryce Canyon
Self Portrait, May 2007

Thursday, December 27, 2007

The other side of 2007

Looks like I'm gonna make it to 2008!

On New Year's Day, I plan on doing an annual tradition. The recreational seakayakers gather and paddle. A couple years ago we were blessed with a double rainbow. I usually paddle my short slow boat to make it a long workout. Not this year....
















My medical situation forced me to pass on a lot of annual holiday traditions. I missed the holiday skate in which the ~30-60 year old kids dress up as skain' elves to entertain the much younger kids at the Union Street Parade. Here I am pictured with my fellow skaters, escorting Miss SF and entertaining the kids.



I also renewed my interest in ice skating again. My new skates got some use this year and I even toyed with idea of playing ice hockey again. I even skated in the warm California Sun. I am cutting out all skating for the time being now.



Happy New Year!

albert

Saturday, December 22, 2007

Helmut Kommt Nach Hause




A much younger Helmut before he ever became Helmut (from HS yearbook). Member of the infamous SauerKrauts.


I am finally going home to SF Xmas eve. I've been delayed by the Kaiser Mid Atlantic giving me the runaround. I actually have a barrage of MRI and CT scans xmas eve afternoon before getting on the plane. This whole situation is like a script for a comedy.






"... he called the suicide hotline

and got put on hold..."


Prost!

So I think back to my last days of freedom. I have had an 24/7 entourage since October 24th, with just some breaks when I can sit home alone. The weekend before I volunteered at the huge multi day Oktoberfest celebration in SF which I have done the last couple of years. I worked the busiest nights, Friday and Saturday for One Brick, a volunteer group where I am one of the organizers and a beneficiary of the festival (http://www.onebrick.org/). I worked two long nights at the festival.
0

Jess three Germans volunteering at Oktoberfest

There has been a special place throughout the years with my adopted heritage. My previous German name from high school was not so PC and I wanted a name last year to put on the name tags at German events. "Albert" is a good German name but, I wanted a name that said: "He must to be German".


"His name tag says Helmut but he looks Asian to me...". I also tell people when engaged in conversation that I am 1/3 German, basically, genetically impossible. At Oktoberfest an older German gentleman came up to me and said:
"Helmut? My name is Helmut too!!! We must be the only two Helmuts in this place!". I laughed and agreed and proceeded into the crowd of thousands.


My German friends in Koln making a donation of Euros to my vacation fund last year.

It all started back in sophomoric year in high school German class. A group of us musicians thought that it would hilarious to start a parody oompah band. "Die SauerKrauts" were born. We were a 6 member band made up of 2 Asians, 1 woman and I think no Germans. We played authentic oompah music with authentic instrumentation, spoke German, donned somewhat exaggerated German cloths and stretched parody & double entendres to the limit. We played various high school events, community gatherings and groups like the Lions Club & Senior Center. This was years before Spinal Tap stole our idea. We were way ahead of our time.


Tschuss,

Helmut
former leader of the infamous SauerKrauts
aka albert








Friday, December 21, 2007

Mine's Bigger Than Yours!

. In SF, the last time I saw an oncologist

I FINALLLY got a chance to see a oncologist again. I have not been under the guidance of a specialist since I left SF. I have been very fustrated navigating the Mid Atlantic Kaiser. I'm a second class citizen here and have less rights and benefits than I do in SF. This has slowed the logistics to a crawl.

I have basically taken over all the management of my own care. The work that fell on my family and A-team now falls on me. In addition there is SF Kaiser, My personal life and everything else that is going on. Huge job, lots of stress in trying to get things done in an understaffed system etc. That is why only 5hrs of sleep a day. A bit of that stress has been released but there still is some. Luckily much of that time I should have been recovering, but without all the stress.

I had a few weeks to be my own oncologist, changing my intake of drugs, and planning treatments, since I did not have one for 5 weeks. I've made my "expert" recommendations for my own treatment to my new oncologist. Let's see if she gets PO'd and kicks me....

But then again, by the medical reports I am a dead man walking. First ones our were gruesome, "4-7 months", "as bad as it gets", so much doom and gloom. The docs started to change their story after they saw me make the miracle turnaround and fight back.

But to set the record straight, my situation is dismal and I need to manufacture a "hail Mary" to go on. Basically late stage lung cancer spreading all over. Non-operable.

Here is what I have:

Non-Small Cell Lung Cancer (many tumors, largest golf ball size)
Brain Metastasis (about 2 dozen tumors larges golf ball size}
Bone Metastasis , lesions
Spleen Metastasis, no big deal
Oh and some healing rib fractures and bad hip.

On a rating of 1-4, it is a 4/4, "as bad as it gets". These words have been ringing through my head. I look at the reports and say, " that guy is a gonner", then I see my name on it, and rescind my opinion.

I hear stories from my elderly friends who have had cancer, walk around the hospital and see nurses and patients despondent about their situation. Often they have stage one or two cancers that may be operable.

"Stop whinging! I raise you stage 4 NSCLC with huge neucrotic brain mets sprinkled with bone & spleen mets." End of coversation.

Bottom line is my team has to manufacture a long shot situation. Big problem is you can traditionally only fight the brain and body cancer separately. I do have some things on my side. I am a young, asian, never have smoked, kayaker which lends me to some very promising options that are currently being studied in clincal trials. I am not going to be a guinea pig but have and will use the results from new research to craft my care.

Babe Ruth's Legendary Called Shot
I feel like the Babe. It's the World Series and I am up at bat. The team needs me. I take a few pitches and then point at the bleachers....

I need to deliver that home run.

albert

Tuesday, December 18, 2007

Winter Cometh

llllllllllllllllllllllll
Let it snow, let it snow, let it snow
Snow always brings up fond memories of growing up (Princeton, NJ). As many of you know I tolerate cold well and hate heat, that is why I live on the Cali coast where it rarely gets above 75 degrees. Well I got my first shot of winter this month when 5 inches on snow fell overnight. By law, you are required to shovel the walkways within 24hrs.

Shovelling snow has always been categorized as a workout rather than a simple chore for me. I did not mind the exercise, more fun than my regular run at night with the temperature in the teens. Brrrrrr.
More than that it reminds me of high school where junior year I organized a HS community outreach program. We shovelled snow for senior citizens, ran a few errands, but mostly had cookies and hot chocolate after. They really liked the company, and we became adopted kids.

I think I was the only student in the whole school that dreaded snow days. On snow days everybody would get up early to listen to the radio to find out if our school was closed due to the snow. While everybody went back to sleep I would curse the any closure announcement and jump out of bed. This was going to be a long work day for me. I had to organize a couple dozen or so shovellers into teams to make sure all our clients were taken of well. Then head out and shovel and make sure all the walkways and driveways were done. Sitting in Calculus in back, getting into trouble, was a lot easier .


llllllllllllllllllllllll
It wasn't all that bad tho...
Somehow I always ended up with 4 girls, driving around in my station wagon, shovelling, eating and chatting all day. It could have been worse...



...like having a shovelling partner who has 4 legs, bad hips
...and a senior citizen herself!

albert

Sunday, December 16, 2007

Albert writes.... finally!




Hey friends, family, and stalkers,

My very first post from Arlington, VA. Sorry this has taken so long. I have been extremely busy only getting ~5hrs of sleep a night. I lie around and rest a about another 3-4 hrs. My infrastructure has been crashing around me; ISP, email in and out, cell phone and medical logistics. Too hyped up with all that is going on. Thanks for understanding about calls in, they are highly disruptive and I should only lose rest answering medical calls.

If you saw me, you probably could not tell today that I am fighting for my life. I feel and move better than I have since last summer. This is only after rest, I tire quickly in a few hours and start falling apart, but that is normal when you are dead tired. I am relatively weak to before but comparable to the average non-athletic guy now lifting heavy bags and such.

Best Memento/Present

The leader in the coveted prize for the best memento/present. The leader is....

R.J., a retired, mid-70's hippie kayaking professor!

I have paddled with him and the Thursday group of ~60 yr old Marin hippies. We drank, ate and did other hippie stuff in kayaks on the SF Bay waters.
"I did not inhale!" as I defended my good name.
I only stopped going because I went competitive and joined the national team. RJ talked about it for about year saying that I inspired him to make a sculpture. I forgot about it til now. I guess he made it a few years ago:

a 3ft high all steel sculpture somehow inspired by me!



I don't know, what do you think of Mini-Me?

Email announcement

I recently sent out an email to people that I had emails for and who would disseminate the message to other members of our group. Maybe you got the email, or you heard about the blog from one of our lists. Please email : albert6363@gmail.com to get on the announcement list for all future important notifications. Almost all updates will be done here....and hopefully I will be around to send and monitor them....

The email announcement is below and I should be back in SF for Festivus for about 2 weeks. Anyway, that's it for now and have a happy Festivus!!!

Hope to see you soon,

albert

Email announcement

Hello everybody!

Some of you I have not talked to in a long time. I have some life changing news, about a week before Halloween I was admitted into the emergency room and later I was diagnosed with lung cancer spreading to the brain, Both are very bad and in late stages but I have responded almost miraculously to treatments to where I am mentally almost all the way back. I am sprinting through treatments to fight the two headed monster.

I am not depressed or even sad, maintaining the same albert personality that has been locked in since HS. I approach this objectively and without emotion like a scientific case study calling on my biotech and medical skills from over 15 years ago..

It is going to be a hard battle and I have certain advantages given my genetic and non-smoking background. My medical team is top notch put together with some top people from SF, Boston MGH,, Johns Hopkins, DC and even experts in the area on the cutting edge. I am in good hands with 3rd, 4th or more opinions. One big problem, everybody is vacationing!

Only a few social groups know about my condition, mostly local, are SF Bay area and few of my foreign friends. I apologize profusely for either not telling you, not letting you visit or even call me. Also, I am often asleep random times a day. The implications are too great; if I let one of my friends call then I would have to let many others call too, Right now I am booked with medical meetings, treatment, managing my life... and oh yeah I should be resting. Somehow I am behind my computer or on the phone 8-10 hrs a day and on the phone on hold a couple hours! My background, biotech, medical and engineering helps me quickly understand the technical reports. I have a lot of old colleagues that work in the area.

As far as not telling most of the closest people to me, those I have known for decades, I am sorry. It went so fast. By the time I was diagnosed, (a week later btw) my condition dropped significantly for a week and a half to the point of being an invalid, hallucinating and just out of it. I could not dress or feed myself or even hold a fork for over week dumping food on the floor like a 2 year old. I barely can remember 5% of that time period. It was a very scary time for my family and the "A-Team", but I was so drugged out and affected by the cancer I did not realize what was going on. I was projected as having a lifespan of a few months... by ALL the doctors and specialists who saw me, giving me less than a year at most.

The hospital, at first , could not figure out what I had for almost a week. The A-Team was very effective in "protecting" me from my closest friends, fighting for my rights, questioning medical decisions, etc. I just let them handle everything and they delivered big time. I knew I was not thinking straight and my support team could make better decisions than I could.

They thought originally that I had something contagious like TB or worse. I was locked in a special negative pressure room and all visitors had to wear masks the whole time. At least one member of the A-Team stayed with me in my hospital room 24/7 with no notice for the entire week wearing these uncomfortable masks the whole time. I was the inverse of the Bubble Boy. I had an escort into the emergency room the first night and another A-Team member (MD) came later once they locked me in and would not let me leave.

I started treatments the very next week after my release from the hospital. Wide Brain Radiation and a targeted drug called Tarceva. My brother who was with me for two weeks, was replaced by my parents. He went home thinking this was it and took a bunch of cloths for me, life mementos, cell phone, etc. 5 days into treatment I suddenly "woke up", becoming coherent again. Everybody was looking at me saying "Who is this guy?" I was gaining about 10-20% mental capacity every day for almost a week.

My coordination came back after a few days in the middle of the night. It was weird like I was putting on a skin tight "coordination suit", I could feel coordination coming back into my limbs. I was so excited at 4 am I got out bed and tested my skills. In pitch black with sunglasses on I started to flip a TV remote and catch it without being able to see it. I also walked up and down my room jumping, spinning and walking backward, I could do all of it. Another check off the list. Initially I felt like a 3yr old with Alzheimer's since physically and mentally I still had problems. I had very little short term memory, but long term was intact, remembering decades back very well. But now I have recovered most of my mental capacity including a lot of short term..

Anyway I am fighting 2 deadly late stage cancers, I have lots of tumors in my brain and lungs, largest is golf ball size. I am surprised there is room for brain matter at all with the number of marbles in my skull! Initial prognosis by one of the oncologists: "As bad as it gets". Unfortunately, you can only treat one at a time, so I have had to treat the biggest problem each step. We just ignore the spleen cancer for now, too small of a problem.

I am recovering phenomenally to the first treatment and I am surprising the doctors.They keep stretching out my life expectancy now. The also want to torture me with the most effective treatment possible since they think I am in great shape, so it looks like chemotherapy next.

Obviously my hopes are to push back the line. I am working overtime now to do that. It is hardest job I have had in years. You can't tell by the way I look or act now that I have a huge medical problem... except maybe by my shaved head.

Check out:
http://www.blogger.com/

You can track my recovery or get information there. Right now I am in DC at my brothers recovering getting ready for the next stage of treatments. Sorry Scott, Steve, Debbie, Chris, MKP club, and all my other DC friends. I hope to see you soon. Please no calls, Email or text me first. I will try to find time to call back. Sorry....I feel like I am trading life expectancy just to chat these days. Every time I see a doctor/specialist, they give me more time than the last.

Please pass this on to other members of our group who may not know. I have only sent it to a few people, those whose emails I can easily access. Sorry if you get multiple copies of this announcement or it was forwarded to you. I have had major problems with my email for 2 weeks now.

always,

albert

working hard for you today to provide you with a better albert tomorrow...
:)