Wednesday, February 23, 2011

I was SO close!

The plan was to head down to LA for the leukopheresis and removal of the stitches. And the plan itself was executed flawlessly. I headed down there yesterday and met up with H-Lo to be a tourist and grab some dinner in Santa Monica. I spent the night in a hotel that was walking distance to Cedars-Sinai, and woke up early this morning to make it there in time to start the process. The nurse in the blood donation lab was very kind, but also very conservative. I was told under no circumstances was I allowed to move my arms once I was hooked up. This was a little disturbing since my initial thought was that I could sit there for the possible 8 hours reading books, writing e-mails, and watching movies. Luckily the casa Deepistan had given me some movies to bide my time, so I set up my laptop to watch one of my faves, Up. Then I just needed to produce the proper dendritic cells quickly enough so my battery wouldn't just wear out. I managed to finish up in about 3 hours, leaving minutes on my laptop and giving me enough time to rush up to the surgeon's office to get the stitches removed before lunch!

So what am I complaining about? Well...this whole procedure excited me so much because it offered me the chance to finally shower as soon as I got home! And then I get the news - no showering for another 24 hours, AND you should wear a hat to make sure the scar doesn't get infected. Yeah, not much to complain about, I admit...but if you had to hang out with me lately, you might feel the same way.

Thursday, February 17, 2011

Yep, I'm back!

I arrived back in San Francisco last night, but kept a little on the down low today after having dinner with both sisters and my freighbor. At what most would consider an ungodly hour, my "Big Sis" left this morning and my other sister "W" is sticking around to take care of me until early Saturday morning. I'm a lucky man to have the family I do!

Unfortunately I'm also sometimes a little spacey. Somehow I managed not to record the discussion with the amazing oncologist Dr. Rudnick, whose name, for as much as I like him, must have been carved out with the tumor, as I consistently have not been able to remember it even once since I first met him. And I really do think he's been one of the best oncologists I've talked with so far. (Yes, I did try to use the word "Redneck" to give some association - didn't work so well).

Luckily my "Big Sis" took really good notes that day, so here's a quick summary. Essentially it's believed that the recurrent and obvious tumor sprung from cancer that has been around for a very long time and just recently became more aggressive. The aggressive part of the tumor was growing very rapidly. The number 20% was mentioned for the aggressive, compared with 3% for the non-aggressive part, but to be honest, I can't remember what those referred to at this point. Can you remind me "Big Sis"? Anyway, the part that was really good to hear was that about 99% of the aggressive tumor was removed in the surgery (thanks to the verbal mapping), along with some of the non-aggressive tumor. There is still a very large area of the non-aggressive, spread out tumor, but that's hopefully the part that will be attacked by the vaccine.

In addition, the tumor was tested and showed that it is not sensitive to Temodar. This doesn't necessarily mean I won't go back onto Temodar again, but it does lean in that direction. Apparently on the plus side, "old" tumors like this that aren't really sensitive to Temodar have shown good reactions to the vaccine (we think). And the vaccine might also sensitize the remaining tumor cells to any other types of chemo which have yet to be applied. Of course, if you get a lemon, make lemonade. I try to look at this result and think, well, Temodar made me miserable, so maybe this is a benefit!

My next step is to head down to Lala Land next Tuesday night for a day-long appointment Wednesday. They're going to extract my dendritic cells and replace the rest of my blood. They'll then use those cells and the tumor to make up the vaccine. Also that afternoon I'll get my stitches removed!

About 2 1/2 weeks later I'll head back down there for my first injection of vaccine. This will happen every other week for 3 visits, followed by another MRI and some blood tests checking to see how everything went. Part of this investigation will determine how sensitive my immune system is to the vaccine, giving me some indication to its effectiveness. It will also lead to the decision about whether I'll be picking up another chemo treatment. These conversations will involve Dr. Rudnick and Drs. Clarke and Butowski from UCSF. It's been a pretty positive process so far, and I've really liked the experience I've had down at Cedars-Sinai.

In the meantime, I'm trying to get my life back slowly. I'm still not completely recovered (sheesh, it's been a week, I should be better by now!), but as the steroids reduce, my sleep increases. I do need to slip in some exercise soon just to take advantage of my meds....

Tuesday, February 15, 2011

Welcome to the "Hotel California"

You can check out any time you like, but you can never leave....

Our expectation was to head home directly after our meeting this morning, but it turns out the quickest opportunity I have to enter the clinical trial is to start by getting my qualification blood tests tomorrow. Luckily we have such fabulous cousins here willing to let us stick around for another night to start that process! Then in one week I will be heading back down here to have the cells taken out of my immune system for the manufacturing of the vaccine. All of this will be explained in more detail tomorrow, so until then, remember, there's plenty of room at the "Hotel California"....

And the winner is?

The "G. Kravitz Band" (aka "Kravesis") and...my mom! They both guessed ZERO staples, which is how it worked out this time. Stitches only. I guess my original surgeon wasn't lying when he said that the screws and scar would let someone open up easily into the same area of the brain. They didn't even shave a large part of my head, just a strip along the old scar. This definitely relieves my biggest concern, which was whether I could actually change the name of my blog....

Today I'm about to head off for my appointment with Dr. Yu, and then it's back to SF to join the wonderful drizzle. That might be a good thing to keep me inside for more rapid recovery.

Monday, February 14, 2011

Tinseltown!

Today I got to spend a little time seeing the other side of the world, through the frame of a camera in Tinseltown! My cousin here is a music editor working on a film for Warner Brothers, so his he and his wife offered my sister and I a chance to head out there and check out the scene and have some lunch. It was really cool to be able to walk through a far less publicized studio to see what it's like to shoot films there. It's really amazing what it takes to throw together a final piece. We had a really great experience seeing what went behind the scenes and how much fun such a career could be like. We also got to check out the museum, which for several of you out there would've been a dream come true (Peat). The entire top floor was dedicated to the Harry Potter series. Over my head even before the tumors, but very cool nonetheless. I did hit my limit while I was there, but managed to get back "home" in time for a solid nap to recover. In addition to the random energy levels (most likely tied to the steroids I'm on) I'm also noticing a similarity in slight memory loss. Not nearly as bad as the last time, and still awaiting recovery, but frustrating just the same. Weah weah.

Sunday, February 13, 2011

Ah the future!

A benefit? Or a curse? You decide.
Thanks Lee!

Saturday, February 12, 2011

Sometimes maybe cancer's not so bad....

By the way, anyone want to guess how many staples there were this time? Competition is always fun!

Yup, time for the update

Yeah, I know, I know. I'm a little late on this post. But I've got a good excuse! It might be old, but it never goes away....

So where have been the last few days? Logan, these are the days of your life!

Tuesday - Feb 8th - Pre-Surgery Day
My "big sister" and I arrived at Cedars-Sinai early for all of my pre-surgery appointments. Initially I met with Dr. Samadi who was in charge of testing me to make sure I was healthy enough to qualify for the surgery. This included an EKG, blood tests, and a chest x-ray. Given our tight schedule I only had time to sneak in the EKG before heading off to an appointment with Dr. Eliashiv to talk about the surgical brain mapping. With her and her cohort I went through a quick test to set a baseline of my "intelligence". She showed me lots of pictures that I was supposed to name, including a compass and a protractor (which I've been mixing up since I was a kid) and an accordion, which for some reason I couldn't remember (even though The Who told me about momma's squeezebox). Other than that I did pretty well. Well enough to use the mapping method as a way to determine which parts of my brain could safely be sliced. The next meeting was with Dr. Yu to talk about the procedure overall and what will happen afterward depending on the results. Dr. Yu and his co-horts were amazing. Seriously, I don't think I've met a surgeon with better "bed-side manner" than Dr. Yu. He's incredibly caring, explicative, kind, and patient. And he also shares a decent sense of humor. My first meeting with him definitely made me feel very comfortable in my decision to head down here to C-S. Well, that and the big Jewish Star on the building. You know how religious I can get. After meeting with Dr. Yu, it was lunchtime and then time to finish up with the rest of the medical tests. The final test (chest x-ray) was in the same location as the MRI that I needed to get, so we managed to pull two tests into one, bumping up the scheduled time for the MRI. This time I had a bunch of stickers adhered to my face (shown below) to spatially map out the MRI image for the surgery. Little did I know, this had to stay on me until I entered surgery. How sexy.... That night I managed to meet up with my dear friend "AE" for dinner and then sack out in preparation for the big day!

Wednesday (and Thursday) - Feb 9th - The "Big" Day
We headed off for C-S early that morning to register for the surgery. I was supposed to be there by around 10:15 for a 2pm surgery. As is typically the case, things took a little longer than expected. However, once I got checked in, I got to meet a few more of the surgeons and also got to meet Dr. "Bob", the anesthesiologist who's worked with Dr. Yu for over a decade. He was incredible. Very communicative, and hilarious. He described all of the positive aspects and the process that the brain mapping procedure went through. Unfortunately he also told me that it was impossible to video record it. There were too many people in too small of a place. There was a slight chance it could be audio recorded, but that depended on others in the room. Basically it was so small that he was practically going to be sitting on my lap. He liked that I was a physicist so he could explain in a little more detail about what was going to be happening. However, the reality of it wasn't quite so exciting for me. As with last time, they injected me with something to sack me out, and then I didn't remember a thing until I was woken up well after. I was told about how witty I was during the brain mapping, with questions such as "What date is Christmas?" to which I answered, "Well...I don't generally celebrate Christmas, since I'm actually Jewish, but if I were to celebrate Christmas, it would be December 25th." Apparently they've had similarly detailed experiences with previous physicists. We're so special (read overly literal?) After surgery I was moved into the ICU for recovery, and remained there for a couple of days. Mainly because the regular rooms were completely full and they couldn't transfer me out! They had a list of rules in the ICU that we followed scrupulously, originally being Midwesterners, but slowly violated as my stay there kept extending unnecessarily. I ended up getting more than one visitor ("big sis" and "AE"), and did "occasionally" eat some sweets for dessert.... While in the ICU, all of my doctors came to visit me at one point or another, including Dr. Yu and Dr. Rudnick who is an oncologist in the department. He, too, was amazing in his description of the procedure, the results, and the upcoming plan.

This is a good time to mention that what I went through was not and will not be a CURE. I'm saying this for myself as much as for everyone else, but realism is key unfortunately. Dr. Rudnick mentioned that for about 30% of the patients the vaccine has a wonderful effect in improving their long term survival, whether it's related to the vaccine on its own or how it improves the effectiveness of future chemo treatments down the line. In addition, so much more of the tumor was removed this time than last, making me very confident that I made the best decision possible. He mentioned that the entirety of the "MRI visible" tumor they removed will be used to make the vaccine, as well as being tested for its response to Temodar. They are also going to test some other cells to see if they represent tumor as well. They are doing a very thorough analysis of what's come out of my brain. More than I've been able to do having owned the brain for over 40 years! Both "big sister" and I agreed that this oncologist was one of the best I've ever dealt with. He explained things very carefully but with good logical background and little vagueness. I'm looking forward to meeting with him again. And while there are some disadvantages to leaving a single company, unified hospital like Kaiser, I couldn't feel better about my decision to be here at Cedars-Sinai with these doctors and nurses. They've all been incredible.

Friday - February 11th - Headed "Home"
I got permission to get released only a couple of days after the surgery, even though I was still being kept in the ICU (due mainly to a crowded hospital). This was basically the same as with the last surgery, except that personally I was doing much better. I was able to walk around with little pain or issues. My memory was much better than last time (yes, I knew how to describe the "tape measures" on my desk at work). And my appetite and understanding of how to handle medications was much better. I was also heading to a much nicer "home"! I cannot praise my cousins here in LA enough. While I'm generally keeping people's personalities as private as I can, my family knows these people well, and they are incredibly special. They have made this entire process completely possible. Even better, they've made it beyond positive. While this was clearly the right decision for this treatment, I cannot even imagine how challenging this would have been to try to pull this off without a wonderful, supportive family taking care of us. Of course, this also marks another time to thank my direct family, especially my "big sister" right now, for all that she's been doing for me day by day. The word "love" is clearly not enough to express how much this means to me.

Saturday - February 12th - Is it the weekend?
So where am I now? Well, I'm still healthy enough to bitch about my status more than I should be. So I guess objectively I'm doing really well, because I hate that I can't (yet) head out to go play ultimate or go bike riding or kayaking. I'm still taking lots of medications, including steroids (enemies beware) that are messing with my sleep quite a bit. I'm not super communicative yet, but working my way back. The current plan is to recover here at my "southern home" up until Tuesday when I have another appointment with the spectacular Dr Yu, and then hopefully will be driving back to my original (and somewhat crowded) home in San Francisco to meet up with my other wonderful sister "W" and my freighbor. For those of you living there, visits will of course be welcome! Though the timing and extension of them might be limited depending on how I'm doing (I am optimistic however!)

In other news, my family is still dealing with one heck of a month. My dad had a brain radiation surgery for a metatastic cancer he had a day after my surgery. His brain surgery went well, but soon after he was suffering from a challenging bowel issue leading to digestive issues. The latest news on that is that it's under control, but of course we are still concerned with his conditions all initially created by the stupid cancer. So, I'll remind you all that cancer really does suck! And there's still going to be an ultimate frisbee tournament developed to raise money to fight all kinds of cancer. A description of the tournament can be found at http://www.huckcancer.org. I am still hoping to be recovered well enough to play in it, and am also raising money for the cause, which is the Lance Armstrong Foundation (a really amazing group). Feel free to donate here!

Friday, February 11, 2011

Oh yeah.....



video

More will come later.....

Thursday, February 10, 2011

Another update from Big Sis

I spent the day with Eric--he is totally amazing! He looks great, is walking around, eating normally, flirting with the nurses....and conniving to get an early discharge. We think that may happen tomorrow. Unfortunately, because the hospital is SO popular, Eric had to stay in ICU even though he doesn't need intensive care. However, he followed the ICU rules of no cell phones or computers which is why he has been incommunicado. Hopefully tomorrow he will be reunited with his gadgets and I can turn this blog back over to him.

On the medical front, Dr. Yu says that the post-op MRI looked really great, so that is very good news. He also regaled us with stories of the embarrassing things Eric said when they woke him up during surgery to probe his brain. And what were they? Well, you'll have to ask Eric--all I can say is that apparently physicists are quite erudite even under anesthesia.

Still no celebrity visits, but one nurse told Eric that as far as she was concerned, he was a star. So clearly the surgery didn't affect his charm factor.

Wednesday, February 9, 2011

Update from Big Sis

I just got word from Eric's doctor that he did great during the surgery. They were able to wake him up in the middle and perform a test that involved showing him cards with pictures while they stimulated areas of the brain. Not surprisingly, Eric passed the test with flying colors, enabling the doctor to target tumor areas rather than important brain areas. Doctor Yu believes he got pretty much all of the tumor out (he thinks it IS tumor and not necrotic cells) and that there will be plenty for the vaccine. Eric was in great spirits before the surgery, endearing himself to the medical staff with his scientific curiosity about the technical aspects of the procedure (and the chocolate he spread around didn't hurt either!)

Eric will likely be in the ICU tonight, which means that he had to be surgically separated from his cell phone and his computer. Therefore, please don't be offended when he doesn't respond to texts, e-mails or calls. I will be able to return his electronics to him most likely tomorrow.

On another note, there was a celebrity sighting today in the waiting area while Eric was under the knife--an actress from Designing Women. I was not able to tackle her and get her to visit Eric, but I will try to be better prepared from now on.

Tuesday, February 8, 2011

Puttin' on the Ritz

Today has been one crazy day. My "Big Sis" and I had to cruise around Cedars-Sinai for the first time to put to rest all of the appointments and tests required to enter surgery tomorrow. We started with the pre-op appointment to test my blood, urine, lungs, and heart to make sure I'm healthy enough for a major surgery. In the middle of taking those tests,
I had an appointment to learn more about my "awake" time during the surgery. This is very cool. After they open my head, they'll wake me up and start probing my brain. While they're probing they'll show me pictures and ask me questions to determine which parts of the brain they can carve out, and which parts they need to leave behind. I really want them to videotape this, but I don't think that'll happen. I also got to finally meet Dr. Yu, and this increased my confidence even more. Not only does he clearly know his stuff, but he also has amazing bedside manner! In fact, the entire hospital so far has been incredible. Whenever we looked lost, someone would stop and ask us if we needed help. That said, I still haven't run into a Hollywood star.

The last item on my list today was a pre-op MRI. For the first time in my history, they marked locations on my head that will better guide the surgery. These plugs they stuck to me make me look like...well...you guessed it.
FRANKENERIC!!!!!

These need to stay on until the surgery tomorrow, which starts around noon and should end around 4. That means no shower tomorrow.

Not sure when I'll be ready to update the blog, but I'll try. Or maybe I'll beg a family member to post my status....

ps - Thank you all SO much for all the great messages I've received via e-mail, texting, voicemail, etc. Sorry I haven't gotten back to you directly yet, but it's meant a lot to me!

pps - Let's hope they don't accidentally replace my brain with Abby's....

Monday, February 7, 2011

Yeah, I have an obsession with Rocky. And who pulled this together for me?
"Yo Adriaaaaaaaaaaaaaaaaaaaaaaan!"

Sunday, February 6, 2011

Heading to LA-LA Land!

My sister Donna just got in today from the snowy and blustery East Coast, and tomorrow we head south to LA to get this project moving! I'll try to keep things up to date as they change, and so far, they haven't.