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.