CSTAR

Sorry I haven’t posted lately…radiation is starting to kick my ass. It’s not something to succumb to, however, only something to endure. My point is, we all have a finite amount of energy to do things every day. I just have less than before right now. It doesn’t mean I don’t do anything. I still work out every day. I still handle my schoolwork. I help the unit out as much as possible. I don’t sit around whining about being tired. I do most of the things I usually do, I just have to sleep a lot more. It’s just an adjustment. Bosco sleeps 22.5 hours a day, and he’s plenty happy. All of this was reinforced by the first topic:

PinCushion

Based on recommendations for TMC (traditional Chinese medicine) from several oncology physicians, we went to see Dr. Guo in Chinatown to start herbal therapy and acupuncture. Seriously, Dr. Guo is the man when it comes to TCM in the U.S. He is one of the first people to bring TCM to this country, and definitely the pioneer when it comes to adapting TCM to western medicine. Take a look here, its very interesting:

http://www.liferising.com/about/guo.html

Our appointment with Dr. Guo blew my mind. I don’t know if I am quite ready to accept everything about eastern medicine, but that guy has too much respect in the western medical community to be dismissed. I am very excited to begin his treatment. Here’s our general treatment plan:

1. Emotional – A well balanced emotional state will lead to health and the defeat of cancer.
2. Sleep – more sleep, more sleep, better quality sleep, more sleep, more sleep (both eastern and western doctors have said this is the most important thing I can control in my fight)
3. Diet – a variety of foods is crucial to provide the largest spectrum of nutrients for health. This also includes herbal therapy, where I am now taking 5 different types of herbs, mushroom-black tea, and miracle cookies (actual name). Herbal therapy does not interfere with western medicine, and mine is designed to boost my natural immune system as well as mitigate the destructive effects of radiation therapy.

I could go on and on about the different thought process TCM presents, but here is the main thing:

1. Cancer is a symptom: meaning that a condition existed that caused the tumor. Dr Guol is only interested in my diagnostic images from before all of the surgeries. He says he will treat the underlying problem that caused cancer, while western medicine removes the tumor. Awesome!
2. Dr. Guol doesn’t consider TCM to be alternative medicine. He considers it medical science, period. Therefore, he will treat me as a cancer patient. Meaning, he doesnt really concern himself with Dr. Pelzer’s efforts, only with healing my body of cancer and its underlying conditions. This is super cool because I don’t care if the Americans or the Russians get to Berlin first, only that one way or the other Nazi Germany is wiped out (check your history).
3. The coolest part: TCM IS SO EMPOWERING! I really like the fact that it presents me with an opportunity to heal myself. All of my western treatments have happened to me. Cancer happened to me, surgeries happened to me, radiation happened to me, and I just endure it. Now I have an opportunity to improve my own health by applying herbal therapy, eating a variety of foods, being super active (as I can), and sleeping, sleeping, sleeping. Its just nice to pick up a weapon and participate in the fight.

After meeting with Dr. Guo, I next went to see Jun, who is Dr. Guo’s acupuncturist. She divided my treatment into two parts: immune system enhancement and shoulder therapy. She began by sticking needles in the top of my head, bridge of my nose, stomach, right hand, knees and my feet. It was very relaxing after my intial apprehension, but I wasn’t yet a believer. Then she says she wants to work on my shoulder. I thought I should roll over, but she says its not necessary. She tells me to put my shoulder in the position where it hurts, which I proceed to do. Then she starts working a needle into my left calf, which loosens up my shoulder and takes away the pain. Amazing!

More on this later, but radiation sucks. The first few days weren’t so bad, but it is really starting to accumulate in the form of fatigue. No big deal, not freaking out, but its not cool at all. They are nuking my brain every day. I’m putting together a walkthrough for everyone, but this post is already too long.

Big Thanks to DVision! Chris at DVision has been super helpful to spend a ton of money on several pair of glasses and sunglasses for me. I am trying to make some lemonade about how paranoid I am about protecting my other eye, and expensive designer eyeglasses is a nice start. Big thanks for their help in selecting great stuff.

Next post will be about radiation (Sunday?), and also about Dr. Pelzer getting me in to have my shoulder treated by the Bears team orthopedics physician (Dr. Nuber). I just hope I get Urlacher results and not Grossman/Orton therapy!

I am going to start posting from the hospital, since we estimate we spend 20 hours a week between 8 different doctors there, and I’m usually too tired from radiation to post when I get home. So more info in the near future.

What a day!

1. Today started with a scary situation. A strange, yellow-brownish watery liquid was coming out of my left nostril to start my day. Great. We immediately thought it must be spinal fluid, which is one of the worst symptoms following a craniotomy. Spinal fluid leakage would indicate brain trauma, which is bad.

2. However, after arguing with Mary Ellen (Dr. Chandler’s nurse) about the fact that “no it is absolutely not blood or snot!” (WHY DON’T THE “PROS” LISTEN TO THE DAMN PATIENT?”) we were told it will wait until our next neuro appointment, which is tomorrow afternoon.

3. Then, a genius suggested that it is probably some sort of drainage from the bellybutton fat that was used to fill my sinus when they reconstructed my head. This seems to make the most sense, as Dr. Pelzer called me later in the day and, after a series of questions, came to the same probable conclusion. We op-checked it by having me keep my head between my legs while on the phone. Since this didn’t induce more fluid to drain, it is probably not coming from my brain. Yay.

4. This situation ate up the whole morning, so no physical therapy, in case anyone was awaiting the outcome of the PT throwdown ’07.

Off to radiation!

1. Radiology oncology was running behind today, so we had to wait a couple hours to start my first treatment, which is fine since I am so patient in nature. That’s a joke at my expense. Haha.
How unpleasant is radiation treatment you ask? Here’s my totally accurate (perspective error aside) narrative [internal dialogue in brackets]:

Operator: okay Mr. Schrank, just lay down here and we’ll put this cushion under your legs and this other one under your shoulder like you requested to keep you comfortable.
Me: okay, thanks buddy!
Operator: Okay, so now we are going to put you in the mask [Iron Maiden…EXCELLENT!] and bolt it down [movement = bad] and then we are going to shoot lasers [air quote Dr. Evil “laser”] into your head from five different angles to minimize tissue damage in any one area.
Me: okay, thanks buddy
Operator: You like Phil Collins?
Me (muffled from mask [IronMaidenExcellent!]): mffHellNo!mfmfmPhilCollinsSucks!mfmfmmfmf
Operator: okay, I’ll put in the greatest hits and turn it up
Me (muffled in the mask): NOOOOoooooo……
Operator: …I see your true colors shining through…

—– break in story: Phil Collins is bad enough, but Phil Collins doing a cover of Cyndi Lauper? It’s like washing down rancid fish with someone else’s vomit…hard to figure out which is worse, but there is definitely a synergy that makes the net effect MUCH worse than the sum of the parts. And yeah, he was actually singing along. I couldn’t decide which I wanted to drown out the other. Back to the story ——

Operator: sooo sooo sooodio! [WTF does that even mean?]
Me: [someone end this, its not worth it, I’ll take my chances with the cancer…]

2. This goes on for the longest 15 minutes of my life. Tomorrow we will be listening to the Slipknot 9.0:Live album during treatment, because that is what I am bringing. The nice thing is that the Phil Collins took my mind off the fact that I could actually taste the radiation, which is flavored like a blend of chicken and my own flesh cooking.

So far not much in the way of side effects. This is to be expected, as Dr. Mittal has explained that radiation is cumulative. This means that side effects and the probability of complications will increase each day over the next six weeks.

Tommorrow is the rescheduled PT Throwdown ’07, as well as PCL Tech (Phil Collins Lover) music fest ’07. Viva La Fiesta!

More updates as events warrant! Below is a picture of PCL Tech (he operates the “laser”)

The big event is, of course, that radiation starts tomorrow. Here’s some details:

1. As before, 5 days a week for 6 weeks
2. Dr. Mittal (radiology oncologist) will examine the tissue graft just prior to radiation to make sure I am healed enough. If not, we will push radiation back. There is no hurry to start, if we have to wait a week or two, so be it. We’ll probably start tomorrow, though.
3. The only real concern I have is damage to my good eye. I feel pretty strongly that if this occurs, I will stop radiation and take my chances, since I have no detectable tumor right now. Dr. Mittal feels the dosage is low enough that this is “very unlikely”.
4. I will lose my left eyebrow from the radiation, and some hair on the back of my head where the radiation enters. This may or may not be permanent.

I can’t stand my physical therapist (trying to get my shoulder up to 100%). Here’s why:

1. SHE DOESN’T LISTEN TO ME. I know myself physically pretty well. In two visits, I have had two episodes of being irritated when I have to repeat myself over and over.
2. Her answer to everything is “stop doing stuff”. My response is “do your job”. Don’t worry, physical therapist, I’ll make you do your job. You will get creative and find a way to therapy me without me stopping all activity. I spend enough time on the couch.
3. The other PT’s listen to me. In fact, I like everyone else in that office EXCEPT my assigned therapist. She hands me off to other people and all is well. She is careless and seems to have no passion for her work, while everyone else is happy to finally have a patient willing to work his ass off to heal. Don’t worry, lady, I’ll fix you.
4. My next PT appointment is tomorrow, and I am planning on going ala carte. I will demand all the stuff that I now know is effective (the thing that runs electricity through my shoulder), and she will not be allowed to stick me on an elliptical machine for 30 mins to chew up half my rehab time. We are on our way to being 3/3 for PT altercations.