Say cheese!

Went to UCLA early Monday and Tuesday to get my teeth ready for the radiation treatments. They took x-rays and made a cast of my jaw for the flouride tray and the mouthpiece I'm supposed to wear when they blast my mouth. They used this pink, play-do type stuff that hardens in seconds. (My dentist, Dr. Soltani, is CUTE, and she's really nice. What's the deal with all these attractive doctors and dentists popping up in my life?) So I'm supposed to brush and floss after every meal, and wear this flouride filled tray over my teeth for 5 minutes every night... forever. No more slacking when it comes to oral health, but I guess the good news is when I die I'm going to have all my own teeth.

I'm finishing up the cleaning at my old apartment. Yes, all by myself. Ever since the radiation news I've been spending a lot of time alone, doing stuff on my own, much to everyone's annoyance. I just need the illusion of being in control. My body is healing, but worrying about what's around the corner is really starting to wear me down. I haven't had any more fainting spells or dizzyness, so I'm not taking on too much or wearing myself out.

I had tri-tip for dinner the other night, and carnitas last night. But I don't think I'm quite ready for a Fatburger yet (unless I eat it with a knife and fork). One more week should be enough time for the swelling on my tongue to go down more and to get more maneuverability. Still sticking to liquids during the day. I just don't have much of an appetite when the sun is up.

Next Wednesday I see Dr. McNicoll. Friday is my radiation appointment.

Happy Anniversary

Where does the time go? One month already since I went under the knife. I'm speaking more clearly, my leg wound is getting back to normal skin color, and my arm has almost all its flexibility back. Yesterday was the first time I woke up without immediately thinking about how wierd my mouth felt. Yesterday was a good day.

I report to Radiation Oncology on October 8th. I got an info booklet from Kaiser on side effects and other stuff to expect. The actual treatments take 5 minutes, 5 days a week, for 6 weeks. Aside from dry mouth, loss of appetite and a little fatigue, I don't expect too many problems on a daily basis. So I'm starting to feel a little better about the whole thing.

Tomorrow morning is my dental appointment at UCLA. Since I'll be producing less saliva, I'm at more risk for cavities, so I'm supposed to get some sort of fluoride gel and tray to use during radiation therapy.

The hardest part about this past month hasn't been physical, although it has been a challenge. Every time something new comes up, most of my efforts have been towards getting myself in an emotional and psychological place where I'm not bitching or whining about the whole ordeal. I haven't been praying. Not for time to turn back and make the tumor go away, or for strength and serenity, or anything so cliche. But I have been thanking him for James. I knew he was pretty wonderful before, but to make me feel like the luckiest cancer patient in the world?... that's quite a feat.

Radiation Treatment

I met with the Radiation specialists this morning. Three of them. They poked around my mouth, reviewed the CT scan, and went over the post-op findings. Bottom line: I'll be spending five days a week for six weeks in radiation therapy. Earlier, they had graded the tumor as a borderline 2-3 (from 1 to 4). But after the surgery, they discovered that it was actually a 4. Part of the tumor that was taken out had extended from the original mass enough to cause concern. Dr. Kagan explained that from past experience, they believe that there is a 30% chance without radiation that the cancer will come back. If I go through radiation, the chances will go down to as much as 16%.

As far as side effects, there will be dry mouth because the salivary glands in my mouth will be affected, but the glands in my parietal area (top part of my cheeks) will be left untouched. Because I won't be producing as much saliva, I'll have to take extra care with my teeth, so Monday I'll be at UCLA getting some cavity prevention gear. There will be a diminished sense of taste, but with someone my age, they expect that it will return in about 8 months. The inside of my mouth will have some kind of sunburn type sores, but that's temporary.

Dr. McNicoll and Paula made a guest appearance. Paula told Dr. Kagan I was their star patient, but that's only because I promised to get her and Maria drunk soon. Before Dr. Kagan came in with the verdict, Dr. McNicoll sneaked in the exam room to give me a heads-up on what was coming, just to soften the blow a little I guess. Then Dr. Kagan came in and busted him for elbowing into his turf (they were just kidding).

James asked that since I will be coming in for check-ups periodically forever, is radiation treatment necessary since any tumor that may develop would be caught early. Dr. Kagan said no because it would be in a hidden area, underneath my tongue, which wouldn't necessarily be detected with a periodical, visual exam.

I don't even remember the questions I asked, much less the answers. James assured me that I was fine, at least from the outside. I could feel myself go numb. I honestly woke up this morning believing that there weren't going to be any more surprises, and that the biggest thing on my mind this weekend would be moving.

It didn't really hit me until today that I would be a cancer patient for the rest of my life; that there would never be a typical medical appointment for me again.

Nothing but talk

My brand of speech therapy seems to be working: reciting Italian words and singing. My playlist is mostly hits from the 80s since those are the only songs I remember all the words to. Plus, "Hungry Like the Wolf" has the added bonus of annoying James.

I've finally gotten the keys to my new apartment. For those of you who aren't aware of the long saga of the downtown loft, I've been waiting since May to move into a bare bones but huge loft around the corner from Cole's in Downtown L.A. I'm moving all my stuff out of Koreatown this Saturday. It sucks that when people found out I had cancer, there were all these offers to run errands, cheer-up, etc. But when it comes time to move... nothing. It's right up there with driving someone to the airport as the least favorite favors to perform in Los Angeles. But I guess moving the same weekend as Yom Kippur and the USC vs. Stanford game wasn't the best decision. C'est la vie.

Tomorrow is my post-op appointment with the Tumor Board. I guess they have to decide if I should get radiation treatment. I hope not. The swelling in my tongue is getting much better, and the stitches in my mouth and arm are quickly dissolving and falling off. I just can't wait to have a chili burger already.

Week 3

The latest photos are available. Thanks to Agnieszka Lapczynska for her fascination with all things medically appalling ("Oh, that doesn't look bad at all."). Click here.

Food update: Had chili on Thursday w/half a liverwurst sandwich (1 hour); one slice of pizza on Friday (30 minutes); and tried Nachos Camacho Saturday (just a few bites over 45 minutes). The swelling on the top of my tongue seems to be much less. The underside is still a pain in the ass, but down enough so that this past week I'm able to floss my teeth again.

Happy Birthday to Big Eric. Check out the Birthday Boy as Lenny at the Pacific Resident Theatre's production of "Of Mice and Men" in Venice Beach. He's gotten some very good notices for his performance.

Some really terrible news. Randall Flagg, our family dog passed away Friday night. He was a 12-year-old Siberean Huskey, and the only dog I know personally who had two dog houses, a swimming pool, hot meals, and ice water. He was a great puppy who had no doubt that he wasn't actually a dog, but a four-legged human. He will always be loved and missed.

First night back at Cole's

I showed up pretty early because I wasn't sure how late I would be able to stick around. Drove for the first time since the surgery as well since I've gotten a lot of flexibility back in my neck and shoulder.

Ali, Allan, Rob, and Sal were already there. It was great being back, even though Ali started in on the Elmer Fudd jokes as soon as I opened my mouth. I offered to show them the trach hole, but got no takers; funny since all my girlfriends are eager to take a peek. Andrew showed up a few minutes later, and I laid into him and Ali about telling everyone how much I ate at the Bellagio buffet the week before the operation (I thought what happened in Vegas stayed in Vegas).

The remodeling better happen soon, because the crowd for the I See Hawks in L.A. show can't fit in the back room anymore. It's gotten pretty annoying. But the band played some new songs, and they sounded great.

I'm going to try and drive around today, get out more. Cabin fever is starting to set in, which is no fun when your arm is constantly on pins and needles.

That sharp, tingly feeling

Saw Dr. Blackwell this morning. The waiting room at UCLA Medical Center was chock full of people! Some were holding their X-rays or CT scans, others were obviously post-op like me. I wasn't actually able to see Dr. Blackwell until an hour after I checked in. And they were all so different, old and young, caucasian, african-american, hispanic, asian,... it was a rainbow coalition of cancer patients. One of Dr. Blackwell's nurses told me that I was his first off-campus patient. Hey, he's my first plastic surgeon!

The wound in my arm is healing nicely, he reported. Two more weeks, and I can stop changing the dressings on a daily basis and simply moisturize. I'm experiencing more discomfort on my arm, jaw, and ear lately. He said that as the swelling is going down and the nerve endings affected by the surgery are healing, this is only natural. So it's a good thing that my wounds are annoying. It's not really painful, more like my arm was asleep and now it's constantly at the pins and needles stage. He scheduled one more appointment for the beginning of November. I told him that I'm eating soup, and I had a square inch of pizza this past weekend. He said that it's good that I'm trying solid food, and that I just have to be very patient with myself. Same thing with talking. The best thing I can do is practice talking and eating and that eventually I'll be back to normal.

Afterwards, James and I hung out at the Coffee Bean & Tea Leaf a block away. It was such a nice day. I scored a Chocolate and Toffee flavored Ice Blended... heaven! Beats the hell out of Nutren.

That's all for now. I'll see you guys at Cole's tomorrow night.

Pizza

This weekend, I ate about a square inch of Hawaiian Pizza. Since my tongue is swollen, most of the chewing was done by my fork, but I managed to get the stuff down. I tasted some of the pineapple and tomato sauce, but because I got a little too eager, I also bit into a numb part of my tongue by accident. Dr. Blackwell warned me that when I was ready to try solid food I should expect that a 10 minute meal would take 1 hour. Since my tasting is diminished still, the better choice was a bowl of Hot & Sour Soup I got Friday night. That was actually very good. I had a hard time when I tried the tofu, but 5 minutes later, it got chewed and swallowed.

As of this morning, the tracheotomy hole is closed. I'm still putting a Band-Aid over it, but now I'm breathing solely through my nose and mouth. Now the priority is the scars. The swelling on my neck and face is continuing to go down, but still there. My neck stretching is coming along nicely. Hopefully, I'll get enough range of motion to drive to Cole's this Wednesday. Wish me luck.

I see Dr. Blackwell tomorrow morning. I hope he takes the stitches out of my arm. They're keeping me awake without the Tylenol 3, and the skin around the edges are pretty dry. Fat is starting to accumulate underneath the graft, finally. Every time I change the dressing, I get dizzy looking at muscle and tendon.

Saw "Hero" again this weekend. Rented "The Ladykillers" and "The Red Violin". But I couldn't find "Demonlover" (sorry Lane, I tried), which I hear is hilarious. Otherwise, I just napped and exercised all weekend.

Now that I'm starting to eat real food again, I'm going to have to step up my workouts. I mean, what's the point of following the cancer diet if I only end up gaining all the weight back?

New photos

Had another photo shoot last night. My colleagues at work just can't get enough digital imagery. Or maybe I'm just an exhibitionist.

Skipped the arm wound because it wasn't much of a change, but there's a never-before-seen shot of my leg wound. The synthetic scab was nearly all off, so you can see the brand new skin in all it's fleshy, magenta glory (Angel, turn away).

http://www.howdareyou.com/deadcat/index.html.

Post-op Appointment

Went to Dr. McNicoll's office this morning. Luckily both of his RNs, Maria and Paula, were there so I could give them a couple of boxes of chocolate-covered macadamia nuts. Brought Dr. McNicoll the bottle of tequila, but no thank you note. I decided to mail it instead. Didn't want to risk embarrassment if he actually read it while I was sitting right there.

So he checked out the swollen (but much deflated) tongue, which he reported is healing nicely. He slid the scope up my nose and down my throat to check the progress on the back part of the tongue; more good news, there's no swelling there. The skin on my arm is healing nicely. His colleague, Dr. Lueg, took some pictures, but I left Paula the URL for the blog pictures as well. I made the mistake of wiggling my fingers while looking at my healing arm. It's like a glass-bottomed boat. Saw some muscles and stuff moving and nearly took a header.

Because there was a small cancerous off-shoot from the main tumor, Dr. McNicoll set up an appointment for me with Radiation, so they can check for any microscopic cancerous cells (again, with the worse-case-scenario talk). But he's sorta confident that I won't need radiation. Then more talk about the healing process in my jaw, and how fluid draining out of the wound on my neck is better than... well, after hearing the description I had to put my head between my knees (I'm such a wimp).

We discussed physical and speech therapy. I'm doing alright with the modified yoga moves I've been doing since I got out of the hospital. I'm going to wait on speech therapy until after next week. Right now, I sound a little better than the adults on the Charlie Brown cartoons, which apparently is good news considering I'm only two weeks out of surgery.

Next week, I see Dr. Blackwell, then the week after that, the Tumor Board for a post-op evaluation, I guess. But tomorrow night, I think Agnieszka is coming over for another photo shoot. I'm hoping that next Wednesday, I'll be able to go to Cole's for the I See Hawks show. I miss you guys.

How to say "Thank You"

My post-op appointment with Dr. McNicoll is tomorrow. I got a realllly great bottle of hand-crafted tequila for him (I never thought I'd say this, but I hope my doctor drinks), but I'm stumped when it comes to the thank you note.

This guy saves lives as a job. Day-in, day-out, save a life, ho-hum. How do you say thank you? AND let's not forget that in the middle of a busy, out-of-town conference, he brought a doctor from another hospital in so I could get my surgery a week earlier!

Because of my arm being out of commission, I can't even bake him a cake. Does anyone have any ideas?

Family Day

My brother and sister took me to the movies this afternoon. I went out into the public in all my swollen and bandaged glory. It wasn't too bad. No babies crying at the sight of me, or cars comedically hitting the center divider. We saw "Hero" at the OG Town Center. It was beautiful, the first time I saw a Jet Li and Zhang Yimou movie in the theater.

Did a load of laundry and completely wore myself out. I don't think I'm drinking enough of those cans of liquid nutrients that they sent home with me. The feeding tube is out, but I can still only take liquids. I'm supposed to have 2 cans, three times a day, but I'm really only taking 2 a day. Hopefully, I'll be able to have pizza next weekend.

Since the wheezing through my tracheotomy hole is getting louder and whistley-er, I guess the opening is getting smaller and healing. The neck is stiff, but my left arm is getting stronger. Today I put my hair up in a ponytail in less than 10 minutes. That's my life for now, small victories.

Post-post op photos

As promised, here are some photos of my surgery scars. I know that some of you are kinda squeamish (Angel), so I posted them remotely at howdareyou.com.

Click here to see the photo gallery.

Have a Happy Labor Day Weekend.

1st Full Day

Unfortunately, I didn't get much sleep the night before because my bed and I had to get reacquainted. But I got up around 10am, cleaned up, and spent the entire day reading magazines donated by friends, backgrounding season 4 of Sex and the City, and exercising my tongue. Do you believe it took me all day to consume 3 glasses of liquid?

Day Nurse Jennifer stopped by to make sure I knew how to change my bandages and care for the stitches Dr. Blackwell left; I guess he wanted to save some fun for later. My next appointment with him is on the 14th. I think I'm getting separation anxiety from Dr. McNicoll; I'm such a cliche. I'll have to wait until the 8th for any more sick (but amusing) surprises from him. But seriously, if it weren't for his efforts to get Dr. B in from UCLA to assist, my last day at the hospital would have been my first day in (see Dr. McNicoll rocks!).

So except for the slow drinking and flashing my wounds to a complete stranger, it was like playing hooky. The Docs said that I should be able to try soft food on the 2nd day. I hope so, because I'm craving kiddie food like crazy: chili dogs, corn dogs, cheese pizza, ice cream, gummi bears, etc. I'm going to try some yogurt today, and hope the swelling on my new tongue goes down a lot more.

James says the swelling on my face and neck have gone down a lot in the past 2 days. I'm feeling like Jabba the Hut. But after tonight's photo shoot, I'll post a couple of sick examples for all to decide for themselves. If you're driving over, Irolo and 7th Streets are your best bets for parking in the early evening.

And I've noticed some complete strangers commenting on the blog lately. I just wanted to say thank you for your support and encouragement. This has been the wierdest 2 months of my life