Nuke-u-ler Magnetic Resonance Imaging (aka MRI)

This week I received my first MRI since I started my monthly Temodar cycles. The hope is that the tumor will, at the very least, remain unchanged with each new image. At the very most it will be pounded down into nothingness, never to be seen again. So...what were the results?!?

Well, Round 1 was a draw. However, since I am the current heavyweight champion of my brain, and we all know that "...in the event of a split decision, the victory goes to...", well, you get the point. Of course, in Round 2 I might want to change over to being Rocky....

Wanna know what the MRI's look like? I thought you might.

This is the original MRI before I had surgery. Now look carefully. Can you see the tumor?

This is approximately the same image taken in my most recent MRI. It shows how nicely the tumor spot has filled back in with actual brain material. Or gumballs. Either way, I'll take it.

This is an MRI from October, right before I started my first cycle of chemo. In the red circle you can see a few white spots and a bit of discolored area. The circle is red because those things are evil.

This is an MRI image from my most recent series, also highlighting that same area. Essentially there is almost no difference between the two images, which is considered very good news. Even better news would be if those spots completely disappeared, but I'm trying to teach myself not to count on that. The sizes and positions of the spots might appear slightly different between MRI images, but mainly that's because the cross-sections are about 5 mm apart, so sets of images taken two months apart will never perfectly align.

In the meantime, I'm starting my next cycle tonight, and will be meeting with my 2nd opinion doctor on Monday.

Ding ding....

Feeling thankful on Thanksgiving...and every other day as well

This week I came back to Michigan to be with my family for Thanksgiving. I hadn't seen anyone in my immediate family since shortly after the surgery. I hadn't seen my nieces, nephews, or in-laws since before all of this happened. So while this might sound obvious to some, I feel incredibly thankful to have such wonderful parents who raised such fantastic siblings, each of whom married amazing partners so they could raise some of the most adorable, wonderful, caring, and sweet nieces and nephews I could ever imagine. And of course, I feel incredibly thankful for all of my doctors and nurses and all of my wonderful friends (in particular "H-Lo" and the "Freighbor") who've kept me going long enough so I could get back here this week to see them all!

The rest of my thanks are spread out far and wide:

To the people I work with and the place I work. I can't even begin to explain how easy it's been to make it this far because of their support, and how crazy it could have been if not for them.

To my mom's chocolate cake. Damn that's good.

To Chana and her mom, for helping me keep perspective.

To blogs, so I don't need to write quite as many e-mails....

To other survivors, for helping me learn how to pull myself through.

To ultimate, for connecting me to some of the most amazing people I know.

To Lance, mainly for making me laugh.

To the Lions, mainly for making me...laugh.

To the X-men, for giving me a quick way to explain things to strangers.

To all the turkeys who sacrificed themselves (including the Lions).

To layers. Remember, layers are key.

To drug companies. While they aren't perfect, they are keeping me alive.

To the parts of my hair that seem to be slowly returning.

To the members of Congress who are caring people and understand that an incredibly wealthy nation can afford to keep its people healthy.

(And again) To my luck of being employed by a great company, and therefore having health care to keep me alive.

To my siblings' dogs, each of which is adorable in its own way! (I still like you more, Chana....)

To music....sweet sweet music. And, of course, dancing in the street.

To wilderness areas. They keep me sane. Ok...close to sane....

And not to be too repetitive, but I'm most thankful for my family (immediate and extended) and friends (local and long distance) for all the kindness and love they've shared. And yes, that's you I'm talkin' 'bout. Youse gotta problem?!?

Second verse, same as the first!

Last week I was in the middle of my 2nd round of chemo, and my first round of chemo with cold virus. How did it go? Well, in retrospect, it was about the same as the first round, with some bonus tracks from the cold. In fact, it mirrored the first experience so much, I felt the same level of frustration and disappointment towards the end of the week, when the fatigue and lack of appetite carried on longer than I expected. And yes, as "H-Lo" and my mom both said, I was once again too hard on myself. So...lesson learned? Hopefully regarding that particular pattern, but if not, I did at least learn some technical lessons which seemed to work pretty well.

There is a woman who has a different blog for her own brain tumor. It's actually an incredibly detailed blog. In fact, it's so detailed, "Lazy Logan" will probably just refer to her to explain more particularly the "ins and outs". One of her entries gave a great description of the meds I can take to, well, "improve" my digestion during the chemo. I also increased my anti-nausea meds from the previous cycle, and made sure to aid my sleep towards the end of the week. In fact, I improved my sleep so much it continued well into the following day! Not bad.

Now that I'm done with the 2nd chemo cycle, I'm feeling great. Looking ahead, I'm making my first plane trip since the surgery to head home for Thanksgiving. I'm super excited to see my family, including my nieces, nephews, and in-laws, whom I haven't seen since before this all happened! And now I'll finally know if the screws in my skull will set off the airport alarm.

After I return, I'll have my next MRI, the first one since I've started the chemo cycles....

No hall pass for me....

This past week, I was hoping to finally get myself back into river kayaking. I'd even told all my kayaking friends to continuously harass me to join them. But as the weekend got closer, I started to notice a little dizziness and fatigue. I knew that I was starting my 2nd chemo cycle this weekend. Is my body foreshadowing my reaction to the meds? Well, it turns out that having cancer does not, after all, give me an exemption from other illnesses. It was just an annoying cold that kept me from kayaking.

Lance does it again....

http://www.vimeo.com/1301366

Welcoming the "New" Normal

Of course, there was nothing wrong with the "Old" Normal. The "Old" Normal had plenty of pizzazz. It had style. But it was lacking one thing....one big, gnarly "Thing".

After a couple months of blasting "Thing" with nuclear, chemical, and biological weapons of mass destruction, we are so far holding "Thing" at bay. But the post-war environment has been slightly rearranged, and every month we still need to launch a sneak attack on "Thing" to keep him from spreading across the land. This brings us to the "New" Normal.

Ok, so maybe the war analogy is a bit too much, but the "New" Normal is beginning to finally crystalize. Day by day I have been slowly picking up pieces of the "Old" Normal and seeing if they fit into the new puzzle. I've returned to work, almost full time. I've brought my dog Chana back into my life (with much thanks to JO for...well...everything). I've been gradually increasing my physical activity level. I even picked up my guitar for the first time in months. That said, I know that not all of the pieces will fit, and the final picture will definitely look different than before.

From the physical perspective, the 5 days per month of chemo will likely lead to 5 days of subtle misery; a slight nausea, a loss of appetite, a bit of fatigue, and, of course, frustration. But as my friend "Emmysan" pointed out to me, most women go through a very similar pattern every month, so I have no complaints! There are also several aspects of the "Old" Normal that I've yet to reengage, though I am optimistic that eventually, with time, I'll be able to forcefully press in at least some of those pieces.

From the philosophical perspective, the "New" Normal will have a pretty different orientation. It's still early, but from the outside it must be interesting to guess where this might go. Internally I'm trying not to guess, since that can get a little scary....

In the meantime, as the "New" Normal unfolds, I might not be writing as frequently, so fear not for long periods of silence. They do not indicate a turn for the worse, but more likely a turn for the better. I do once again want to thank all of my friends and family who have reached out to me in so many different ways, even simply letting me know I'm on their minds.

And keep your eyes and ears open for the eventual announcement regarding a fundraiser AGAINST cancer that some friends of mine and I are trying to organize. Good times to be had by all! Except Mr. "Thing"....

Temporarily discharged for 23 days

I've now begun the "gold standard" cycle of 5 days of chemo, then 23 days of freedom. I began on Sunday night, and things felt relatively normal for the first couple of days. By Wednesday evening, I was feeling a little more tired at night, but nothing too severe or different than the old days. Then came Thursday. I was wiped out by the end of the day, both physically and emotionally. I'm still not sure if it was the chemo directly or having not slept well on Wednesday night. One of the side effects of the chemo is an odd "anxiety" that woke me up in the middle of the night. I felt high energy, shaky, and nervous, but there were no actual mental thoughts I could assign to those feelings. It was one of the most bizarre reactions I've ever had. I did have some medication left to treat specifically that, and so on Thursday night I took that as well, and slept far better. Today, my final day, I felt much better over all, though I'm still far more tired than I was earlier in the week. My appetite was also a little down, but I'm hoping the "new normal" will return over the next couple of days.

Tumor? Why I hardly...

Go ahead, fill in the blank.

It's been awhile since my last update. I'd like to say it's because I've been out traveling the world, or creating a new source of energy, or just cutting it loose on the dance floor. The reality is that I just haven't felt ready to say anything.

This past Wednesday I had my post-radiation MRI taken. While waiting for my turn, I ran into another person who was on almost the exact same schedule as I am. It's somewhat surreal to keep connecting with others who have very similar medical issues and are following an almost identical schedule of treatment. Of course, relatively speaking, the numbers are still low, and there is no coincidence in running into another brain cancer patient in the MRI waiting room, but still, go figure!

My expectations heading into Wednesday were somewhat optimistic, since I'd already had a previous MRI 3 weeks into my treatment. Advanced optimism can limit one's stress level in the period of time prior to the measurement, but it can also limit one's emotional boost afterwards. Is there always a dark cloud for every silver lining? Either way, the most important result is that the tumor's size has been somewhat reduced, and it is currently showing no signs of activity. This is good. I am now starting my next treatment phase, consisting of 5 straight days of Temodar chemotherapy, followed by 23 days of freedom. This cycle will repeat until (and if) there is some indication that my immune system has been weakened.

So what is this dark cloud I mentioned? For now, I think I'm going to hold onto that one for myself. I'd rather keep seeing my friends and family appear as the silver linings.

"Feeling good, Luis!"

A quick update: in the last week I've definitely started feeling better and better with time. This week I headed up to Tahoe ("Go Team Tahoe!") with "H-Lo" and "Ansela Adams" for a few days of recovery. It was great for them to pull me along and get me out and about, and I think just forcing a bit of activity has helped boost my energy. I still need more sleep than the old days, but I don't seem to need major midday naps anymore, and I'm ready to get some more exercise. I'm going to try to get back into working as much as possible, and hopefully when I begin treatment it won't knock me back down.

Speaking of which, there is now a plan. I will get another MRI on Oct. 7th, and then meet with the oncologists the same day to discuss the results and next steps. Assuming that the tumor is still shrinking (or at the very least, not growing), then the likely plan is to start the traditional monthly cycle of chemo: 5 days on, 23 days off. The dosage will increase dramatically over what I was taking during radiation, but will depend on how well my immune system responds. I will probably also try to get another appointment with the UCSF doctors to confirm the plan soon after it's laid out.

I did try to get a good chunk of exercise in today, going for a bike ride with my freighbor. It wasn't a lack of energy that sabotaged the ride, though. It was the three flat tires I got. We did eventually make it 25 miles...over four hours. Yes, we could've walked almost as quickly. Wouldn't Lance be proud of me? Actually, he has minions to change his tires on his rides.

As for the hair...well...it's not coming out anymore in clumps. I'm still back and forth on the decision, but not particularly concerned about it either way. It's more just something arbitrary to think about and keep my mind off important things. I'll wait another week to "decide". More important is whether I should use the creepy mask on Halloween....

"I'm sick and tired of being sick and tired"

That's pretty much a description of my current status, summarized for me by "H-Lo". Yes, I have finished the initial 6-week treatment, and yes, at some level it should feel like a wonderful accomplishment. But to be honest, I haven't yet felt the release I was hoping for. Unfortunately, this led to a slight relapse, since reality fell far short of my expectation. At the same time, my fantastic friends and family wanted to send positive messages my way and celebrate the latest milestone, and I wanted to join in on the celebration. Having "fallen short" in that effort too...well...let's just say that yesterday was a rough day. I do want to be clear that I really appreciate everyone reaching out to me with positive thoughts on completing a tremendous benchmark. And I do understand that there are no external expectations regarding how I should be feeling. I know you'll all hang in there as long as necessary, and since I definitely sense things are moving forward, I'm pretty sure I'll catch up to everyone soon.

I was told by my radiation oncologist that in fact there is generally a phase delay for the reaction to the treatment, and that I might feel worse in a week or so. She also commented that given how well things have gone for me so far, there's a good chance that the typical phase delay might not apply as strongly to me. So, lemme 'splain. Wait, no time to 'splain. Lemme sum up: I still have an excuse for not always feeling great and "super social", but I can still be optimistic that things will get better.

Now for the fun part. On my last day, the techs who have been killing my tumor every day for the last 6 weeks gave me a little certificate in honor of the completion of my treatment. They were a wonderful team, even though I hope I never have to visit them in the cancer center again.....

I also got to keep my creepy "mask". Should I sell it at the Folsom St. Fair or keep it for Halloween?

Week 6, here we go!

Started the final week yesterday with a serious bonus. "H-Lo" brought me to the treatment, and then took me to my kayak friend "Neecie's" workplace where she had some frozen tomato soup for me. Turns out she works right next to....Guittard chocolate! She managed to convince them to take "H-Lo" and I on a quick tour. The place smells incredible, and we got to see all the different kinds of things they make. The guy who guided us is friends with "Neecie", so he showed us everything and they even gave us a few complementary treats to go. I almost felt like I should thank my tumor for this.

But on second thought, let's keep hammering it away for another week until it realizes it's overstayed its visit to my brain.

The home stretch....

Today was the last day of the "general" radiation treatment. Tomorrow I start my "booster" treatment, which is when they focus more tightly on the center point of the original tumor. Most people I've talked with said that this coming week is less intense and the beginning of the end. Can I hear a "hell yeah"? This past weekend was pretty rough, and I really want to thank my friends for all the meals, shopping, and general positive attitude they've offered to help pull me through.

Of course, I still need to decide whether to shave the head, and that depends on how many more chunks shed out to blanket my floor in the next week or so. I was going to post some photos allowing people to vote on whether I should shave it off or just leave it (clearly weighting the votes according to how much I trust the voter), but that wouldn't keep this blog quite anonymous enough. So for now, let's look at it a little more creatively. Since I've been identifying this whole process with Wolverine from X-Men, perhaps we could vote for either Wolverine or Professor Xavier?

Except there's no chance in hell I'll be looking like Wolverine's photo shot anytime soon....hair OR bicep.

The other option was posed by my friend "T-bone-money" who sent me two photos of Andre Agassi. That seems reasonable. So...which version of me would people like? And the headband counts, since I do need to cover the parts that have fallen out....though the long-backed mullet is unlikely....

On another note, there was an amazing episode of Fresh Air recently about comic relief for cancer patients. It's not just for the young....

Week 4 - How time flies...

...around in circles. While I'm not blown away at how I'm already 2/3 of the way done, overall I can't complain too much (that is, I can keep complaining, and it will never be too much). Actually, I am feeling pretty good about how I'm doing considering the situation, and know several people in far worse situations. Things seem relatively stable in terms of my conditions. I still haven't completely nailed down when the fatigue is going to hit me hard, but I'm starting to feel like it's more related to my food energy level than my nap time. It's difficult for me to tell how hungry I am until I put myself in front of food. If I keep eating, I tend not to be as tired regardless of how many naps I took. In the past, my stomach was very good at telling me when I was starving. Now I need to pay more attention to my brain I guess. My friends have been pretty good staying on top of me with eating, especially since many of them have their own serious energy crashes and know exactly what it's like.

The main issue is a kind of general fog which enhances my already existing laziness. I'm also losing connections to names and words again, the same thing I noticed before and directly after surgery. I'm less worried about this now, since I know what is causing it (radiation), and know that I can likely reconnect with the lost vocabulary once I'm done with this part of the treatment. It is extremely frustrating, however, but does explain to everyone out here why I'm no longer so naturally humorous and witty in conversation....

I did get to check out my latest MRI image, and overall it looks pretty good. The cavity has closed significantly (sorry, no storing gumballs or chocolate there), and there was no sign of highly active cancer cells at present. The previous deviation of the midline of my brain has mainly straightened out, and most of the ventricles on my left side are now opened up and look normal. There is still a dark region adjacent to the original cyst and tumor. This region is likely a mass of some kind, but it's not clear what it represents. It might be a lower grade of cancer, dead cells, or something else. Either way, my radiation oncologist is going to include that region in the high intensity treatment during my last week.

The remaining plan is to continue with the current radiation treatment until next week (excluding the holiday) and then for the final week switch to a "booster" version where they will focus on a smaller region of the tumor. Once that is done, I have a two week "vacation", another MRI, and then, assuming everything looks good, I begin the long-term period of 5 days of chemo, and 23 days off.

Now, to answer a few questions:

No, I did not get a haircut, and no, they did not re-shave the part where they did the surgery. Will I shave my head? That depends on how it looks after the treatment is done. Basically I'm not too worried about having to shave my head, since I have so many shaved head friends who still look really good. I do NOT, however, want to look like Beaver Cleaver, who was once told he looked like Wilson's airedale when he had the mange....

Week 3 -Done! Week 4? "Hair" we go....

Tonight is the end of Week 3. This morning I was introduced to the next phase when a clump of hair came out in my hand. It's still not entirely clear what the final result will look like, but this clump came from the backside, the radiation exit hole from the beam shot from the front above my eyes. It's kinda like the clumps that come out of Chana, only not as soft and cute.

Today I met with my radiation oncologist, and she thinks that nobody's finger would be small enough to stick into the hole shown in my skull by the x-ray picture. She says that the strength of the attachment of the bone plate is almost as strong as it was originally, but that I should still wear helmets if I ever get back into kayaking or mountain biking. Well...she actually said "I thought you stopped mountain biking - I should probably tell you not to. But if it's something that makes you happy then it's safe enough." Or something like that. Sorry mom, but once I get through the treatment, I'm going back to it.

I'm definitely noticing the increasing fatigue as the treatment moves on, and I'm so over it by now. Until I think about how much worse it could be and how miserable life could become if I were offered something far worse. I even learned today how my nephew got Hand, Foot, & Mouth disease, and for a week has been locked into complete wretchedness! I'm certain his physical feelings right now crush mine. So that leaves the psychological torment. Within a week or two, without any treatment necessary, he will return to a normal life (if you can think of my nephew as normal). Mentally, my situation falls a bit short in that category.

One of the things that tapped deeply to my core today was the announcement of the death of Senator Ted Kennedy. When a man dies from complications relating to the same disease, it's natural to reflect upon the accomplishments of their lives and to project your own. With Ted Kennedy, if I could contribute only a fraction of a fraction of his immense public service I would still be content. My friend "AE's" comments to me generated a mixture of tears and laughter. "Kennedy said it like it was, a real force. An inspiration on many fronts. You're doing damn well on your journey EA, but take a queue from Ted and don't run for president... :-)" I guess when we leave, we should leave them wanting more...and it seems like my hair feels that way now too.

Side note: I did get another MRI this afternoon, but won't know the results until the next day or so. Hopefully it shows that the treatment is generally working well. I'll fill y'all in on that once I hear. I'll also give an update on why I can no longer tell if I'm hungry or nauseous.

Did someone lose their jacks?

I think you might have accidentally left them in my head.....

I found out last Friday that I actually have some titanium screws and ties attaching the bone plate to the rest of my skull. Pretty nifty. You can see the border of the plate they removed for the surgery (the kerf is actually a little big for my taste). It also looks from the x-ray like there might still be a small hole in the skull (drilled out to insert the bone saw?), but hopefully I'll find out more about that this week when I speak with my radiation oncologist. Anyone out there have any theories on what that dark spot might be?

Week 2

Well, this week felt quite a bit like last week, with a little more intensity. I was able to head into work Monday and Tuesday, feeling relatively energetic. Wednesday was another day of napping. I'm definitely feeling the increase in fatigue, but it still hasn't completely shut me down.

On Tuesday I met with one of the radiation physicists. That was possibly the coolest part of this entire treatment so far (shocking, I know!) He described how there are specialists in image processing who work on aligning the various CAT scans, MRIs, and x-rays with each other so that the doctor can determine what volume within my skull they'd like to irradiate. Once that volume is determined, another set of physicists work on figuring out how to set apertures and angles of the incoming beams to accurately fill that volume with a high intensity, while limiting exposure to the rest of the brain. Over the past 15 years or so, the technology has improved immensely, and likely will continue in the next 15 years. If anyone is curious about more details, let me know. It's a pretty impressive process!

Wednesday I had an appointment with my radiation oncologist, and I left feeling fairly optimistic. While I'm definitely being slowed by this treatment, she was surprised by some of the things I'm still managing to hang onto. While I know that could change, the longer I can keep my life moving along, the better it will be!

Once again, I want to thank everyone who's helped me out in tons of different ways. Today, for example, Chana's mom brought her by to visit, and that picked me up for sure. And then a great ulti friend brought some pasta by for dinner. So thanks to everyone again!

Dialing it in bit by bit

Last week I was still on the roller coaster, with lots of ups and downs. But slowly I feel like I'm getting a handle on how this treatment is effecting me, and how to stay on top of it. By Week 6, I'll finally have it all figured out. Yes, that's when the treatment ends.

Caveat: everything I write here is with respect to how the treatment effects me, and may or may not be applicable to other patients. I only say that because the main thing that effects me even more than the treatment itself is when people tell me what they think I must do to survive. Every patient is different, and there is only so much information I can handle at any time during my treatment. Anything beyond that feels like someone has flipped me upside-down and flushed a hose of water in my face. I truly love having access to people who can answer the questions I have and are open to me requesting advice, and I thank everyone for such offers. But I've learned that strong opinions and articles with even a speck of negativity sweep away the optimistic and positive attitude that is most important for my survival. So...let the games begin!

Nausea-

The nausea comes in and out. I've been approved to take up to 4 anti-nausea pills per day. As usual, I tend to be resistant to adding medication. Towards the end of the rough Wednesday, however, I took one of the pills and felt better within an hour. So I added another one for every morning as well. Thursday was a pretty good day as a result, and I was generally energetic and hungry most of the day.

Fatigue-

I am definitely more tired than before, though it's hard to tell since I've appreciated naptime throughout my entire life. However, Thursday night I woke up in the middle of the night and couldn't get back to sleep since my mind was racing around thinking about the "dark side" of the force. As a result, Friday was miserable. I was trying to sleep most of the day, and even after taking the anti-nausea medication, I could never tell if I was hungry. Friday night I went to bed early, slept late, and Saturday was another very good day. Another possibility, which is part of this week's research project, is that as the radiation treatment continues throughout the week, perhaps the fatigue is increasing. Since Saturday has no radiation, it's possible that I recover some of my energy. If this is the case, I will likely try working part-time early in the week, and tapering off as the week moves on.

The "Kids in the Pool"-

Yes, this is probably TMI. I'll keep it brief by saying that I'm handling this side-effect fairly well with OTC medications and some tasty fiber cereals. That makes a big difference as well on my energy and nausea. 'Nuff said.

Female Sympathy-

I've heard from more than one of my female friends that my nausea might be on par with what a pregnant woman feels, and my irritability might approach that of a woman on PMS. If that's the case, then boys, please be at least as kind to them as you have been to me. And who knows? Maybe my next MRI will look something like an ultrasound....

Blinded by Science-

This week I will be meeting with one of the physicists that works at the cancer center where my radiation appointments are. It's as if this tumor has given me a unique learning opportunity that all you "healthy" people can't have. Nya nya nuh boo boo.

Ok, back to eating my strawberries with sour cream and brown sugar. And if you think this is unhealthy for me and my treatment, please keep it to yourself. Emotionally it brings me back to some of the most spectacular parts of my childhood, which for me is a saving grace hundreds of times better than anything else. And besides, all three were organic....

Week 1

Or should I say, "Weak One". I've essentially finished my first week of treatment. Things were going pretty well for the first several days, and I was definitely optimistic. Until yesterday. I still managed to stay engaged, go to work, and try to play some ultimate. Today was quite a bit rougher. The "queasiness" moved more solidly into the "nausea" corner. The fatigue definitely stepped up as well. The other interesting side effect I noticed is increased irritability, which my "freighbor" had actually read about. I've started to notice that I've lost patience when confronted with so many mundane and simple situations. What a wonderful new personality trait this has given me! (Ok, maybe not "New". Let's say, "Improved"?) It's almost a positive feedback loop in that it's made me even more impatient with the treatment I'm going through. So, in advance, I apologize to all my friends and family, and pretty much every other person in San Francisco who might come across me and piss me off just by placing themselves into my visual field.

Now while you might not like me when I'm angry, luckily none of you will have to fear me. I found out today that I am not being "belted by gamma rays", but instead by high power x-rays. The photo above is what I go through every weekday morning at 9:15. With a nice jazz background to keep me mellow. There is an adjustable metal shield in the source that creates the aperture to shape the beam, and the arm and table I'm on can both rotate to aim the beam from any direction. The aperture also has a thickness adjustment to provide the same power at the end target from every direction, even though from each direction the beam will be passing through different thicknesses of...well...skull and brain I guess. One of these days I'll keep my eyes open and see exactly what it does.

My hope now is that this was an off-day, and that tomorrow things will be back to "normal". Funny how meanings of words can change so quickly.

“Clever liars give details, but the cleverest don't.”

Many people wanted to hear a little more detail about how the treatment actually works. So here's the story. First off, my "freighbor" and my friend "K-Mac" helped me organize all the medications I need to take throughout the treatment. Unlike many chemo situations that require delivery by pump at a hospital, my chemo is actually a pill. Well, in this case, two pills, since I need 145 mg and they only sell 140 and 5. Yum. So I only need to head out for the radiation treatment and a weekly blood test. The medication has lots of potential side-effects, but I'll hold off on those until they kick in.

As for the radiation treatment, Kaiser developed a new facility in South City. Each patient is assigned to a "team", which is to say, two technicians and one particular room with some pretty amazing equipment. What warms my heart the most is that each team has a name based on some location high in the Sierra. I'm on "Team Tahoe", the same place that my freighbor's dad and step-mom live. It's also where I happened to be the weekend before my surgery.

Now that I'm on a specific schedule (9:15 am every day except weekends and holidays), I head to the clinic, check in, and walk into the back until one of the techs finds me. The radiation machine is pretty big and impressive. There is a hard "couch" that I lay on, and they fasten down my head with a mesh grid mask that they shaped to my face last week. The machine is able to take x-rays and also fire the required radiation for treatment. Right now they are still taking x-rays to make sure the alignment of my head with the planned treatment path remains accurate. There are several beams of radiation intersecting at the internal locations where there might be remaining tumor. This keeps the intensity low in the healthy parts of my body, but increases it dramatically where things need to be fried. The entire process takes about 15 or 20 minutes, and then I leave. Not quite enough time to nap, but they do have some nice jazz tunes playing in the background. I also found out that one of my techs is totally into hot rods, and she is getting an old '67 (or so) Mustang from one of her patients.

And no, I haven't yet asked what specific radiation I'm being blasted with or how big the beams are. But I will....

Time to make the donuts

Today was the first day of my initial 6 week treatment. For most of last week, it felt like I was standing in line for the new roller coaster. Then a few days ago, I sat down, they clamped me in, and we started clicking up the hill. I felt great physically, but was a little nervous wondering what it was going to feel like once we went over the top of the first drop. Well, so far, this thankfully seems to be a tame ride. The first day of radiation hasn't seemed to effect me too severely. I still haven't taken the chemo (like chugging a beer before hitting the coaster?) so I don't know how that's going to effect me. But I'm trying to stay optimistic about how I feel now, and so far, so good. I'll favor a mellow "kid's" coaster over, say, Millennium Force at Cedar Point. With respect to my treatment anyway....

While I'm trying to stay optimistic looking forward (and hoping to try to work on and off while I have energy), I also know that there's a good chance that my energy will decrease as my treatment continues. And so, of course, I'd like to thank once again everyone who has helped me get to where I am, and also everyone who has offered to help me as my needs may increase. I've got you all on a list and will definitely be calling out to you when and if my current status declines!

While I was "in line" for the coaster, I thought a lot about my situation and where it might bring me. Today I found out that my friend "Gabo's" dad recently passed away. It brought me back to thinking about what the most difficult situation might be, whether it's a personal illness or a potential problem with a loved one. It's hard to know for sure, but I know that being able stay alive in a world that has taken away someone precious to me would be both a blessing and a tremendous loss. So I hope that "Gabo" is doing well considering, and that he's got a fantastic group surrounding him and his family.

On another note, after talking about trying to create a "gumball machine" in the now empty cavity in my head, I had several people comment on alternative approaches. Almost my entire family recommended that I store dark chocolate there instead, though I wouldn't be willing to share that. Others thought it would be an excellent spot to store my keys. My friend "AE" even said it would be a solution to the problem that the Berkeley Naked Guy had: no pockets to store his keys or change! I'm sure "Gabo," a major SNL fan back in the day, would've suggested I let people "put their weed" in there. As it stands, I'll hold off my decision until after Week 4, when I'm scheduled for another MRI to see if the cavity has compressed a bit. Even though these options are all appealing, I'm pulling for a smaller hole to be blasted by radiation in Weeks 5 and 6.

Speaking of blasted by radiation, one contact I've met, who is currently in his 3rd year of treatment, mentioned that his mental imagery pictured a scene based on Galaga during his radiation. A brilliant concept, though personally, if I were to go with the video game vision, I'd try out Defender. That would give me 3 Smart Bombs to kill it all off at once. But as you all know, I'm instead envisioning Wolverine....and my friend "Drainage" described it perfectly.

Wolverine: "Stay low, stay quiet, stay alive."

From my friend "Drainage", who so often provides incredible art along with superb moral support. More news after the treatment today....

Maskmaker, Maskmaker, make me a mask....

Today I went down to the new-ish radiation center in South City to have a mask made for my upcoming treatment. The two technicians who were in charge of making the mask were pretty entertaining. I mentioned to them that I had been told by the doctor that I was going to have a few spots tattooed on my face and the back of my head for alignment of the radiation. They said that they weren't actually inking my face, since the mask is sufficient for alignment. But if I'm a big fan of Mike Tyson, Dave (one of the technicians) is quite good at inking, and we can talk after the treatment. I told them I was a little disappointed since I thought they were going to ink a snake around my neck.

The mask formation was pretty relaxing as they molded the gridded strips to my face while taking a CAT scan. The next step is to align the image of the CAT scan with the original MRI to map out the spots where they will aim the radiation during my treatment. In order for the mask to stay tight and accurate, I had to shave the beard I'd grown post surgery, much to the pleasure of my mom. I was also told that I shouldn't shave my head since the hair I have now will help maintain the tension of the mask. Now that the mask has been made, I am scheduled to begin treatment in one week!

After the mask making, I spoke briefly with the nurse and doctor in charge of my initial treatment. The doctor is "old school" and mentioned again that he was going to put me on high doses of steroids during the treatment in order to keep the brain swelling down. While one of the side-effects of steroids is becoming the Caleefwonyuh governor, the other effects abused me post-surgery in a rough way. So I had to plant my feet and tell him that other doctors had told me it wasn't necessary and we could wait and see if the swelling occurs before starting the steroids. He finally agreed that since the gap left by the scooped part of the tumor is kinda large, it can probably handle any swelling in the brain. And incidentally, since that "hole" is so big, I'm thinking that after the treatment I might try filling it with gumballs and charging $0.25 each. Still working on the delivery details....

I then spoke with them about the treatment and how to best take care of myself while it was happening. The nurse suggested certain creams to treat my skin from being too fried by the radiation. We also heard some interesting news about how large my tumor might have been, and how much remained. It seemed like the doctor thought that much of the size of the object seen in the original MRI was due to a large cyst, and that part of the visible mass was due to dead cells. He seemed to indicate that a large portion of the tumor was removed from surgery. The hope is that the remaining gumball bowl will shrink over the next five weeks, so that when the radiation treatment changes from a wide field attack to a more focused "smart bomb", the area of the target will be smaller. In order to see if that is the case, I've been scheduled for another MRI measurement after the first 4 weeks of treatment. Fingers still crossed.

I also found out recently that the cells from my tumor were not sensitive to Tarceva, which means I will not be taking that extra chemo. That is a somewhat mixed result for me. The plus is that I don't have to worry about pulling in extra side-effects. The minus is that there might be only one treatment that will keep my tumor at bay, instead of the possibility of multiple ways to stop its growth. And I won't know about its sensitivity to Temodar until I get the 4 week MRI result.

After my radiation appointment, my freighbor and I headed down to my company to say "howdy" to the crew there that I haven't seen for almost a month. It was pretty amazing to see everyone, and even my freighbor mentioned that she gets why I've worked there so long, given how fantastic (as well as incredibly sarcastic) all of my co-workers are. I'm hoping now that the treatment doesn't knock me down too much and I'll be able to find enough time to work on some of the exciting projects (but will be "oh too tired" to work on some of the other things, of course).

The Gift

A few days ago "Logan" took an all day hike with friends. (He's feeling great, so, why not?) Upon his return, he found a notice on his door from a floral delivery service telling him that a bouquet for him had been delivered to his neighbor in his absence.

The flowers—which were from a relative—came with an added bonus: a copy of Playboy magazine.

Not only did this prompt a bit of embarrassment and consternation about what the neighbor might think (although, really, this is a San Francisco neighbor we're talkin' about), but also, since we're a naturally exegetical bunch, it sparked a round of email speculations about 'what it might mean.' Was there an article about brain tumors in this particular issue? ("Logan" reports: there's one about G-spots, but as far as he can tell the "g" does not stand for glioblastoma). Was it a standard SF bouquet for straight bachelor convalescents? (In fact, it seems to have been a special order). An instance of the time-honored tradition of giving the gift you'd like to receive? Or, perhaps, a sly joke about which 'brain' the tumor has attacked?

We had a lot of fun batting this one around, much more fun than had we just taken it at face value as a gift meant simply to 'raise his spirits' (so to speak). And consequently, it was a gift that gave us all a chance to laugh and joke in anxious times.

That's a really good gift.

I can finally be "The Decider"

It's all coming together. Yesterday I heard back from "Dr. B" who had spoken to the main surgeon at UCSF about whether it would be wise to dig back in. Conclusion? Even the UCSF surgeon didn't think he could remove too much more, and I'm probably better off starting some treatment as soon as possible. "Dr. B" also spoke with several people about their thoughts on my joining a trial involving taking Avastin and Tarceva along with the Temodar. The general opinion there was that in my case it's probably not worth it yet. So what does this all mean? Essentially the amazing UCSF docs supported the treatment assigned by my fantastic Kaiser team.

There was a slight hiccup when I met with the radiation oncologist at the new Kaiser radiation center. I won't go into too much detail, but after talking to the doctor and nurse there, I had lost about 20 points on my attitude score (almost dropping to the negative). When I got home, I called my Kaiser NP, and she picked me back up. The main concern was that it was hard to see who was going to be in charge of making decisions about the path of my treatment: the new radiation oncologist, the one replacing him when he moves back to LA, or the oncologists that I first met with? Well folks, it looks like it's going to be the two experts from Redwood City, so any questions or concerns I have I can direct through them.

Of course, now that I've basically decided what treatment I'm comfortable with, I'm anxious to get it started. But before they can start it, I need to have a mask made to align the aim of the radiation. My brother hopes they'll give me the mask so that I can use that and my possible radiation hair loss as an excellent Halloween costume next year....

I will admit that the time between now and the start of the radiation is a little frustrating for me. Physically I've improved a ton since the surgery, and the tumor itself has essentially no physical effect on me (unless it grows back). But not knowing how the treatment will effect me keeps me from jumping back into work or training for a marathon (oh...wait...I forgot that I never liked running).

The rest of my family left this morning after completely taking care of me during the rough times after the surgery. So if anyone else visits me soon, you'll get to see how clean my apartment is! For now. I'm also planning on dragging them back if the treatment knocks me down.

In the meantime, I wanted to thank all of you for the great messages and offers to help me out. Unfortunately the tumor didn't quite remove some of my personality flaws (like stupidly feeling guilty when I get help from someone - even though I also appreciate it), but my freighbor and H-Lo are beating some sense into me since I have definitely needed help. And when the treatment finally starts up, there's a chance that the need will return.

What do you see when you're on the GG Bridge?

UCSF (arr arr arr).

Today we met with "Dr. B" at UCSF, an excellent neuro oncologist (and, according to my mom, pretty attractive as well). He described to us in mostly understandable detail all of the approaches to the treatment that he generally offers his patients, and also some of the approaches currently being presented in clinical trials. (Warning for my co-worker physicists: apparently word about our job gets out to our doctors and so they often say "you probably understand how this blah-de-blah works cause...well...you're a physicist." Well it ain't always true!)

One of the main questions I had for him was whether I should try adding Avastin to my chemo to improve my odds. The conversation with "Dr. B" essentially reinforced the"no Avastin" plan set up by my Kaiser doctor, with the knowledge that if this treatment isn't successful, I can always try Avastin later.

One of the other questions was whether or not I should return to surgery to have more tumor removed. "Dr. B" is planning to show my MRI results to the top UCSF surgeon tomorrow and get his opinion, but his initial instinct was that additional surgery was probably not necessary and starting my treatment earlier is likely more important. Of course, if additional surgery is recommended by the UCSF surgeon, it could be a slight challenge to get Kaiser to agree and pay for it....

Tomorrow I will be meeting with the Kaiser radiation oncologist to talk about his part of the plan. The radiation ultimately is what's going to kill most of the rest of my tumor, but maybe I'll take advantage of this chance and bring some vegetables along too.

Finally, an answer....

No, not for how to confidently treat this aggressive tumor. For those of you who've known me for awhile, you no doubt have heard my obsession with the difference between the chocolate chip cookies I make and the cookies my mom makes in Michigan. Hers were always thin and crispy (my favorite) whereas mine would always end up thicker and more cake-like. And before you send me several messages describing the hundreds of ideas as to why this is the case, know that I've been examining this for over 10 years. It was not a difference in recipe. It was not a difference in the cookie sheets. It was not a difference in the egg size. It was not a difference in how careful the chef is.

My mother, out here taking care of me as I head towards the treatment, decided to experiment. She made several batches of cookies, each with different positions and baked with different temperatures. The conclusion? What it seems to be, oh cookie lovers, is the oven style. I have had a gas oven since I've been in California. She has had an electric oven my entire life.

Thinking of the physics, it seems the electric oven is more likely to heat the cookie sheet more directly whereas the gas oven heats the air more uniformly. When the cookie sheet is hot, the cookies spread out before baking. One possible solution in the gas oven is to decrease the heat of the oven, and place the sheet closer to the source of gas. However, the only real solution is to buy an electric oven....sigh....

As for the tumor, I have been lucky enough to have several people in contact with several experts in this field (including, believe it or not, a Canajun we'll call "B" who actually works with one of the potential treatment drugs). Tomorrow I'll be meeting with a doctor at UCSF, and will soon be hearing back from a few non-Cali doctors offering their opinions as well. I am finally closing in on making a decision.

On your mark...get set....

This is the week. The "standard" treatment is scheduled to start next week, so if I'm going to go "radical" somehow (in a clinic or adding more chemo), I need to find out what the options are and whether to try something different. My brother and I made the phone calls, left the messages, and now we wait.

One of the most important treatments for this, I'm told, is positive mental focus. This weekend was amazing and definitely reminded me why getting through this (in good shape) is the way I gotta go. My physical health has improved a lot since the surgery, so I finally had time to go outside and hang out with lots of my wonderful friends here in SF. But once the treatment begins, there's a chance the physical health will decline again. For that reason, I've been creating a list of motivations to keep me pointed in the right direction. Of course, given my general lack of organization, that list consists of things that I've told various friends and family members. So...if any of you have time to shoot me an e-mail to remind me what I said, it would definitely help. Otherwise, I'll have to pull out some lame excuse for forgetting....

Temodar, Avastin, Tarceva...oh my!!!

Yesterday I had my appointment with my neuro oncology team down at Kaiser Redwood City. It is Dr. Peak along with an amazing specialized Nurse Practitioner, Mady Stovall. They spoke with us for almost 4 hours answering questions and explaining what they considered to be the best treatment. They made us all feel pretty optimistic about the possibility of stopping this thing from taking over!

Essentially the latest standard treatment could work well, depending on whether my tumor had a certain "characteristic". How would this work? I would go through radiation treatment every day for 6 weeks while simultaneously taking Temodar. A couple of weeks after that I would have another MRI taken to check the status of the tumor. If it looks good, then I would continue the Temodar at a lower rate for maybe a couple more years, depending on how it effects me. If not...then I'm reaching in with my fingers and pulling it out.

There are some other options that I need to think about. I could add Avastin to my arsenal, though it could effect my life quality in other ways. In addition, if I add it now, and things don't work, it leaves fewer options for the future. There are also two clinical trials I might be able to join at UCSF. One of them involves the new vaccine style treatment, which could have great potential, but would definitely require additional surgery.

I do need to decide if digging in there again is a good or bad idea. The team at Kaiser thinks a good amount was removed and we should move on as soon as possible. I'm kinda hoping the docs at UCSF agree....

Meantime, I wanted to thank everyone again SO much for the kind messages and offers to help. It's definitely motivating me in the right direction. For now, my family has been taking care of me, and my physical status is improving (just in time to get knocked around by treatment!), but I'll definitely love getting help as the adventure continues....

Fruit Flies

When I arrived at my brother's place last Saturday, Mom had done a thorough cleaning of his kitchen and bathrooms, and was in full battle mode against the fruit flies that had colonized his place in his absence. She had set traps, using some ancient Manischewitz (from a Passover celebration looooong gone by) in plastic tubs covered with saran wrap; within a few hours there were several hundred in each trap. But we were still swatting at them. Having waged my own war against fruit flies at home just last year--and done the requisite internet research on the problem--I suggested shallower traps (to drown them), a stricter regime of counter and drain cleaning (Mom was happy to oblige on this one), removal or tight enclosure of any and all fruit fly tempting victuals (sugar, vinegar, juice, fruits, flowers...and the very slimy/nasty compost container sitting just outside the kitchen door), and a thorough laundering of towels, tablecloth, and napkins. After two more days, the fruit fly population was down to one or two individuals. Dare we say, Mission Accomplished?

We realized, collectively, that our battle against this small enemy was a metaphor (or maybe microcosm?--my lit/crit friends can weigh in on this) for the treatment against the tumor. The surgery, as a first line of attack, took out 80% of the tumor. But to get rid of the rest, a combination of creative, persistent, and determined measures will be necessary. And, like the fruit flies, it may never fully disappear--at least, not until the medical equivalent of a very cold winter is brought to bear upon the bugger.

"Eet eez NOT ah toomah" - Gov. Arnie Schwarzenegger

Of course this is something I never expected would happen to me. A mild but constant headache, forgetting a few names and words. Neither of these directly drove me past my typical (male?) resistance to seeking medical help. But as time went on, more words and names were dropped and my stress and anxiety grew. I was in charge of a few projects at work, and felt like I was barely keeping up with the subjects I was discussing with co-workers. Slowly I started to expose my situation to a few friends and family. The response was generally optimistic - don't we all forget words as we get older, and maybe it's worse for you because of anxiety? I should interject now to say that nobody should feel any guilt for those conversations! However, a co-worker and friend reminded me of a friend of his who had similar issues and discovered its cause was "the toomah". Somehow I managed to dismiss that possibility within minutes.

When my amazing "freighbor" heard me talk about my concern, she insisted I go see a doctor. My regular doctor was on vacation, and the doctor I went to see tried to convince me that the headache was due to allergies. And the wordloss? It's natural when you get older!

Except by this time I was forgetting names like "Joe Biden" (who I worked for during the election), the names of the Beatles, and the name of the movie "Saturday Night Fever". That last one should've convinced me something was really wrong.

One week later, at work, my day rapidly collapsed. I had 3 meetings in a row involving actual thinking and discussion, and I could barely keep up. My feeling of mental weakness in the conversations added to my anxiety. In the late afternoon I tried laying down to calm myself, but it didn't seem to help at all. Eventually I called a super amazing friend, let's call her "H-Lo", to ask her for help. During the conversation I completely broke down, and she told me that since she was headed near my company for a class she's taking, she would stop by to chat for a bit. She also called me on the way down to calm me down and let me know she was headed over. When she got here, I walked out to meet her, and when I got to her car, I broke down again. She "suggested" that maybe we should go to the hospital to have me checked out. She even countered my resistance to that by telling me it's no big deal. They'll check me out and if there's nothing to worry about, they can refer me to a therapist instead. I found out later that her instincts were incredible. She had essentially decided that she was going to be taking me to the hospital before she even left San Francisco. She even called a friend of hers, Shannon, to find out how to get to the Stanford Hospital (incidentally, Shannon has also been an incredible source of info to help find the best possible doctors to try to contact). She "suggested" taking me to the hospital, in spite of my mild resistance.

My medical plan is through Kaiser, so we headed to the ER in Redwood City. The whole time I questioned if it made sense to be there, and she continued to reassure me that at the very least I'll get all the physical stuff checked out, and if it's nothing, then I'll know. I was set up for checking my heart rate and getting a CAT scan. It was the CAT scan that first identified the tumor. They then sent me in for a MRI to determine whether I needed surgery that night or could wait until the next morning. In the meantime, H-Lo was investigating the likely surgeon to make sure staying here was the best option. It turned out that Kaiser RC has a fairly well known and solid neuroscience department with excellent doctors. And the surgeon I was assigned to, Dr. William Sheridan, is the head of the department. Amazingly, Kaiser RC was probably a better choice than Stanford in this case

The ER doc came by again to see how I was feeling, and he showed us the MRI image. That was quite a shock. The tumor was about 5 cm, and it looked like it was pushing some of the left brain over to the right. I only mention this so that I can now use it as an excuse for anything I said or did prior to that period that people might have found offensive or idiotic....

The rest of the night was clearly intense. I needed to call my family and friends, and in the meantime, H-Lo continued to aggressively manage the care that Kaiser was going to give me. She ended up staying with me that night, and the next morning the rest of the adventure began.

I want to thank (publically) my wonderful family and friends who all stepped out at the time and since to help me move forward to the best treatment, and of course everyone who has simply shot me a line or a card. That alone keeps me sane and motivated (no comment from those who disagree about my sanity). I will try to keep this up to date with where things stand and where they are going.

Fingers are crossed.

The Bad News

On July 7 2009 my youngest brother -- we're going to give him the pseudonym Wolverine -- was diagnosed with a brain tumor at the age of 40. Nothing prepares you for the 7 am phone call from your mother telling you that there's a possibility you might never see your baby brother again. They operated on him the next day, and the outcome from the surgery was the best we could hope for--full physical functionality, no damage to speech, 80% of the tumor removed. Adult members of the family mobilized and flew from Midwest and East Coast to the West Coast to be with him. Friends brought support, love, and obscene amounts of chocolate. We spent a long weekend waiting to find out the results of the pathology tests on the tumor, doing what modern adults do when faced with uncertainty--we obsessively scoured the internet for information, taking notes, building hope, writing down questions.

When we were finally able to make contact with the surgeon, we got the really bad news: it was a grade four glioblastoma multiforme tumor, "aggressive". Now the networks of friends with contacts in the medical field sprung into action, researching treatments, doctors, and facilities, and offering help in every possible way.

We are at the beginning of a long, arduous journey into unknown territory. I told my baby brother I wanted to start this blog so that in ten, twenty, thirty years he and I and the rest of the family will be able to look back on this challenging time and revel in having helped him to survive.