Wednesday, August 26, 2009

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.

Tuesday, August 25, 2009

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?

Thursday, August 20, 2009

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!

Sunday, August 16, 2009

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!

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.

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....

Wednesday, August 12, 2009

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.

Friday, August 7, 2009

“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....

Thursday, August 6, 2009

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....