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.