VP-16 Hangover...

Actually, I don't feel all that bad today, thank God! This morning I even had some rare energy which quickly faded after my clinic appts. So far though, no real problems with nausea or mucositis (knock on wood). My biggest thing right now is trying to eat. Because of the Palfermin, I have absolutely zero saliva in my mouth and everything tastes like cardboard. The only foods I can eat have to be moist or liquidy. I tried to eat some crackers last night and it was a joke! My Mom just got back from the grocery though and went hog wild! She bought me all kinds of soups, noodle dishes, treats, you name it...

So, we're getting into the Christmas spirit at my place tonight. I've got icicle lights all along my ceiling and also bought a little Norfolk Pine tree from the Home Depot which I've also strung with lights and some ornaments. Plus, as I've well documented, we've got pleny of snow so it should be a white Christmas :)

Tomorrow's going to be a long day as I've got my final high dose chemo Cytoxan. I've got to be at the clinic at 8 a.m. and will be there till around 8 at night. They have to give me 2 hours of hydration prior to my chemo, then they have to infuse me with a drug called Mesna which protects my kidneys (from the Cytoxan) then the actual Cytoxan itself. I think they saved the nastiest stuff for last... Hopefully I'll be feeling ok to celebrate Christmas eve. My cousin Ken is supposed to be coming in from Chicago (weather permitting) so that should be nice.

So, if I don't update, I hope you all have a wonderful Christmas with many blessings!

VP-16

Well, I'm here at he SCCA in a bed and receiving my first high dose chemo. Thank God they finally got WiFi here! This place had every ammenity of a "boutique" cancer center (tasteful updated decor, artwork, gourmet food), but no WiFi till now, go figure...

The chemo I'll be getting today (VP-16) is of course pretty nasty stuff. My infusion nurse Seth told me that most people with solid tumors receive 200mg. Guess how much they're going to give me today...? 8500mg!!!! Holy shit! Now I know why they call it high dose chemo, they're giving me an elephants dose, crazy... I mentioned this stuff is nasty, don't know if that's the proper word for it. First of all, at this dose, they can't put it in a bag because it'll eat right through the bag. They have to give it in a special plastic syringe (5 of them) that get automatically pushed by a machine. I could taste it as soon as Seth hit the button to start the pump. That brings me to the next interesting part of this chemo. They have to mix it with pure alcohol for some reason (he explained it to me but I forgot). So, as I get infused with this chemo it'll be like doing 5 shots of pure alcohol over 4 hours! Might as well belly up to the bar! I got that saying from an old co-worker from Texas and finally got a chance to use it :) So I better get this entry in before I start feeling looped which I'm sure I will be after the dose of benadryl and zofran they just gave me... I'll be doing my best to hold it together (no barfing).

A quick update on the crazy weather we've been getting here; My Mom and Jackie had to push me out this morning even though I parked on top of the hill! Times like these I wish I had a Hummer... I'm a little worried how we're going to get back and forth to my place. I guess we'll deal with it when the time comes. Worse comes to worse we can just crash at Jackie's place although I don't think my Mom's too keen on the idea of sleeping on the couch again. Who knows, maybe they'll plow the street that leads to my place but I doubt it.

P.S. I decided to put one of my painting's up for S&G's :-)

That's pretty much it for now. Just going to listen to some music and drift off........

It's 3:15 and wanted everyone to know we made it home safely, thank God. I'm feeling pretty out of it so I think I'll just hit the rack and pretty much stay there till tomorrow's appts. At least I get a 24 hour break before the next monster CYTOXAN huuuhhhhuuuuuhhhhuuuuu (menacing laugh).

Cheers Everyone!

TBI Day 3

3 days down, one to go! Went through both sessions of TBI today without any problems... I started using the custom designed lung blocks for my afternoon session which were made of lead and around 3 inches thick. They kind of looked like slices of cantaloupe... The blocks were taped onto a piece of plexiglass and attached to the "rack" which holds me steady while they zap me. To make sure they were lined up properly, an x-ray was taken prior to the session. The tech then came in and made a mark on my chest with a sharpie to make sure I was properly alligned. All of this seems pretty low tech if you ask me... I mean the blocks were taped to the plexiglass with masking tape and he positioned me by using a sharpee! I did my best to hold as still as possible for the 12 minutes I was in there but sure I moved a little bit. Apparently, the idea is to protect (the best they can) the portion of my lungs that has the highest capacity (mid to lower portion). I guess I'll find out how the blocks worked once I recover from this mess and go biking or running for the first time...!

My other excitement for the day came from yet more snow here in Seattle. I dropped my Mom off at my place after my appts. so I could head back to Jackie's (wanted to be close to U of W as we're supposed to get hit again tonight). It took me at least25 tries to get out of my little subdivision! I would get halfway up the hill and that was it... I finally got enough momentum to get up the hill and made it over to Jack's safely. On the way, I checked the auto parts stores to see if they had any tire chains and all of them were sold out. I then went to a tire store and could've grabbed a set but the guy was totally capitalizing on the weather situation and selling sets that normally retail for $39 for $100!! People were still lined up to buy them, capitalism is alive and well here in Seattle...

I also wanted to mention that I've found an energy healer who's been helping me. My buddy Lee down in L.A. has been fighting an extremely aggressive brain tumor (Glioblastoma). He'd been through surgery, chemo, radiation and not too long ago had an MRI that showed his tumor was growing still. He then switched to an experimental drug called Avistan. The drug has some pretty bad side effects so he decided to stop the drug and go a different route. In came Ron. Ron is an energy healer who promotes the power of natural healing. I'll comment more later regarding some of Ron's techniques and methods. Back to Lee... He's gone to 3-4 sessions with Ron and told me he hasn't felt this good since before he was diagnosed. He has more energy and has been working and living a pretty normal life. The best news is he just had an MRI and found out his tumor is shrinking!! To me this is incredible as he stopped taking the Avistan (tumor shrinking drug). Can't say how happy I was to hear this for Lee!

In no way do I plan on stopping my treatments... I want the chemo and radiation to kill all of the cancer cells in my body. Where I think Ron can help me (and he agrees) is how he can help my body (and mind) heal so the disease doesn't come back. I think that's one thing that's lacking in the cancer field today is assisting patients in their healing post treatment. I'm excited to find out ways that I can participate in this healing through future conversations and eventual face to face meetings with my new energy healer!

The more tools I can put in my box the better...

TBI Day 2

What a difference a day makes! I'm feeling much better, thank God! The swelling in my face and neck has gone down and my headache is way better. I talked with the nurse today and she said it's common when people first start TBI to get severe headaches as the brain swells from the radiation. I really didn't think I was going to be able to go through with it until this morning. I don't think I'll have a problem finishing my last 4 sessions now... I've been told to expect severe fatigue and maybe some more nausea, nothing I can't handle.

Nice to be back at my place... The roads over here in West Seattle are still pretty slippery but I'm getting better at knowing which hills I can take and which ones to avoid. It's all about momentum... If I can get a little head of steam before I get to a snowy hill, usually I can make it up. If there's a car ahead of me going slow or if I have to stop and re-start for any reason, forget about it. I probably should look into getting some chains for my tires as it seems like most people have them but hoping the weather gets better and I won't have to worry about it anymore. I guess we're supposed to get some more snow this weekend so hopefully I can get my last 4 TBI sessions in.

By the way, it's pretty funny watching the cyclist's riding around in the snow! There's so many people here who use their bike as their primary transportation... For a lot of them, the snow hasn't slowed them down! That's some serious dedication...

That's all for now. I'm totally exhausted and will be crashing early tonight.

First Day of TBI...

Did anyone catch the license plate on that truck...? Wow, can't believe it's only day one and I feel this lousy. I'm really hoping tomorrow is better because I don't know how I'm going to do 3 more days of this... My head feels like it's going to explode and I'm really nautious (although I just took a compazine and attivan and feeling a little better). The combination of Palfermin and TBI has caused my cheeks and jaw to blow up like a balloon. Thank God I have a girlfriend! (thanks for making me feel better babe)

The actual process of radiation isn't really that bad though. In fact, I'm only in there for 12 minutes (two 3 minute sessions facing front and 2 facing back). For the afternoon session while facing front, I closed my eyes and played 9 holes at one of my favorite golf courses in Michigan, The Orchards (front 9). I was afraid I was going to puke so I needed to keep my mind occupied. I was 7 under making the turn...:-) When my back was to the machine, I got to look at a Where's Waldo poster to pass the time. Amazing all the detail that guy puts into those drawings! I finally found Waldo after about two minutes into my morning session so I got bored of that pretty quick. Hoping they change it tomorrow...

Picked up my Mom at the airport tonight which is nice. I feel bad for her as her flight was delayed for an hour and they were stuck on the tarmack when she arrived in Seattle for at least an hour. It took another hour or more for her luggage to arrive, crazy... We've been hit here in Seattle with some serious winter weather (reminds me of home) that's wreaking havoc on commuters. It's really hilly here and I've gotten stuck a few times now trying to drive up hills (and I've got all wheel drive). When it happens, I've got to carefully cut my wheel, let the car roll back, put it in drive and let the front slide around 180 degrees so I can go back down. I couldn't go back to my place tonight because my apartment is at the bottom of a hill. Getting down is no problem, coming back up is another story. Don't want to risk it with my first appointment at 7 a.m. So, Mom gets to sleep on Jackie's couch tonight to add to the drama... I don't think it's a big deal as I think she'll sleep like a baby after a full day of travelling from Michigan.

That's pretty much it for now. The fun is just beginning...

Jowels!

Hey Everyone,

Counting down till D-Day on Thursday! I took these pics at my favorite park in West Seattle, Lincoln Park. I try and stop there when it's nice to get some exercise on my way home from the clinic. It's been especially nice there as we got some rare snow here a couple of days ago and there's a white blanket over everything... It's also been pretty cold here (25-30) and think I may have gotten a wind burn from walking along the beach. I look pretty funny these days having a shiny bald head, red face and puffy cheeks! The puffy cheeks part is from the Palfermin infusions I've been receiving. It's really working as the inside of my mouth feels really thick and weird. I went to Taco Bell for lunch earlier and the food tastes different... I think my taste buds are buried in new tongue flesh, bizarre...! I think it's going to be worse tomorrow as I have another infusion of this stuff. So for the next few days, I'm going to look like a big bald red chipmunk :-D.

Small price to pay (gladly) for reduced mucositis...

Slumdog Millionaire

Jackie and I went out to the movies last night (first time in a while). We saw this great flick called Slumdog Millionaire at this great old theatre in the Capital Hill neighborhood of Seattle. If it's playing where you live (I think it's a limited release movie) I highly recommend it.

Also, wanted to congratulate my friends Roger and Mandy on the birth of their new Baby Joshua! He came into the world a little early (3 weeks) and weighs in at 5 pounds 9 ounces. Can't wait to meet the little bugger! :-) I hope Mom Mandy is feeling better and home soon...

We're sitting here watching one of our favorite movies, Pulp Fiction while also watching a rare beautiful snowfall here up on top of Queen Anne Hill (Jackie's place). Also had a fun day Christmas shopping downtown today. There was so much great energy and Christmas spirit with Christmas Caroler's singing and the usual street performers. The Christmas lights were beautiful with the topper being a giant star above Nordstroms. I think we may go back tomorrow so I can take some shots to send out...

So, it's been a nice last weekend so far before my big transplant starting next Thursday. On Monday I have to go in for the first infusion (of three) of this new drug called Palafermin (sp?). It's a growth factor drug that helps mitigate mucositis. The drug works by stimulating extra growth of the skin inside my mouth. In other words, once I get the drug, my tongue, cheeks and gums will grow extra thick so that when the mucositis kicks in, I'll have a cushion so to speak. Kinda like having padding inside my mouth. I guess the sensation is pretty strange once it starts working as you can imagine having an oversized tongue and puffy cheeks and gums! I'm also starting to prepare mentally for the pummeling I'm going to take. The first step is going to church tomorrow to pray! There's a beautiful church also in Capital Hill called St. James Cathedral that Jackie and I like to go to. It's probably one of the most beautiful churches I've ever seen with amazing stained glass etc... and a beautiful choir.

After church I hope to watch the first win by my hapless Lions... You never know, miracles can happen (although I'm not betting on it)!