what i am going to eat once i can again

Thanks for all your kind words. I have one more post before the state of the economy post and that is what I plan on eating once I can eat again. I am open to other suggestions, but they have to be homemade. Also, you'll note, this mission is going to have to involve my grandmother (maw maw) heavily, but I do contribute myself. Thanks again for all your support.

Not in a particular order but this is what I am going to eat for dinner during the first two weeks I can (all homemade):

• greek style macaroni and cheese
• dolmades
• spanakopita
• chili
• green chili
• lesco (hungarian dish)
  
• lasagna
• chicken pot pie
• hamburger with swiss cheese portabello mushrooms and grilled onions
• greek style pork chops
• my own macaroni and cheese
• my own enchiladas
• flank steak
• calzones: whoever is around we will all make our own kinds
  

When I go to other cities after this is all over and want to eat out:

Phoenix: Los Dos Molinos, Phoenix City Grille
Seattle: Dick's, Piecora's, Yoshinos, Duke's Chowder House
Eugene: Burrito Boy
Hartford: Trumbull Kitchen, but really anything my Aunt Connie cooks is best
Malad: Drive-in

hold on (not related to the song i suggested earlier which got very little praise)

Today, I woke up just praying that the TOMO machine that does my radiation would be broken. That happened once in the past, but today it would would have saved me a lot of pain. You see, my lips have become horribly disfigured over the last few days, and the sores in my mouth are also painful. My lips are swollen and encrusted in scabs and are very painful. I reached a low last night when they started to bleed pretty hard. I just put a wet towel there, but it was painful because the towel got stuck to the lips.

I met with my medical oncologist yesterday and he said the reason I looked so bad was from the 5-FU. I should actually back up a month or two to when the medical oncologist called me at home and said he was considering adding 5-FU to my treatment but he wanted me to know that the side effects would be very bad, which he reiterated a few times. I of course was willing to take anything they threw at me because I wanted to be as aggressive as possible, regardless of the pain. Then, the medical oncologist asked to speak to my dad to tell him of the drug and get him on board, reiterating how tough it would be.

Well, according to the medical oncologist, the 5-FU drastically increases the power of the radiation, and that caused the radiation to rip apart my mouth and lips.

On Monday I talked with the radiation oncologist, and we agreed to lower the amount of radiation going to the lips. Yesterday, we did treatment as usual, and today I was laying down on the TOMO machine, ready to go, when one of the radiation techs said wait a minute, "I am going to go page Dr. ____." The doctor came in and said we would postpone treatment today and thanked the girls for alarming him of my worsening lip situation.

The radiation oncologist basically said they modified my plan, but that there was very little radiation going there to begin with, and that it must be the chemo causing the sores. He also said we would have to take time off because there is a certain threshold of what your body can take and that I was there. I was worried because the day before the medical oncologist warned that taking breaks of six or seven days was bad. In general, I have heard that you want to complete your radiation with no breaks. So, I brought this up to the doctor and he said anything over five days is considered a break, but that we wouldn't go that long. This made me feel better. It also made me feel better when he said there is such a thing as being too aggressive. I think we have been very aggressive, but still want to push on as best we can.

I have a very rigorous plan of how to repair the lips. It basically involves about a 30 minute routine to be done every hour or two on the lips. It's designed to give moisture to the lips, which is ultimately how they'll heel. So, I am going to be fastidious about this, and also make sure to get all my calories, so my body can use them to heal.


I have mixed feelings about all this, but am still confident everything will be fine, and it will be nice to have healed lips.

I am still debating the "state of the economy post" as it seems like a lot of work, but I think a short posting should be coming soon. Also, look for a new post about what I plan on eating after this is over. I think this should be of particular interest to my cousin Ellen in Thailand who must already have a list of the American food she is going to eat when she gets back. Also, Ellen, were you referring to Los Compadres on 7th Avenue?

get ready to rock

Given my love for BTO I think someone must have already suggested "Takin' Care of Business" so I won't suggest it, but BTO (Bachman Turner Overdrive) does have another song that rocks even harder "You ain't seen nothing yet." I would like this to be added to the Manos' list.

I was really surprised, when I saw BTO in concert (the second time) they literally played "Takin' Care of Business" three times. Once to open the concert. The second at midnight (it was New Years Eve), and the third to close the concert, but "You Ain't Seen Nothin' Yet" could have been played just as much.

Of course, I should also add: "Let it ride," "Roll on Down the Highway," and "Hey You" by BTO as they also rock really hard. Really I celebrate the whole collection, but I just wanted the music record to show that my picks draw heavily from the BTO fountain.

the week from ellensberg (for those not familiar with Washington, not a great place)

warning: sensitive material, don't read if sensitive stomach

I am in a good mood for now, so I am going to strike while the iron's hot and get a blog in. The amount of blogging in the future may depend on herculean task of U of A beating UCLA in basketball tonight. The Cats are looking good, but lilliputian good compared to UCLA.

This week proved to be quite trying. I had to do the chemo with the radiation this week. The deal is that once every three weeks I have to do chemotherapy. The chemo involves one dose of Cisplatin that I get sitting down; it takes about an hour. Then, for four days straight I get 5-FU. As Dominic pointed out, any drug ending in FU is bound to knock you around harder than the late great Dale Earnhardt. I got the 5-FU off today, and got a liter of fluids and am finally feeling a lot better. Despite throwing up while getting the pump off, and throwing up heavily every day this week, I am finally starting to get more strength. Part of this is due to the fact that I started to use my PEG-tube/Gastroenterology tube. Basically, it's my feeding tube that Jenny nicknamed Peggy. I can't say I enjoy using it. It's pretty degrading, so I don't let people watch, but Peggy gets the job done. She's been the only way I have been able to keep food down. Although, by food I mean Ensure, or Ensure mixed with something like vitamin water. Once I can go 24 hours without throwing up I am going to try and eat something again.

For some reason, my throat and mouth aren't as sore as they use to be, so I think I could eat solid foods. The one problem is that my taste buds are all thrown off. I had a Sprite this morning, which I drank because the carbonation makes me feel better, but I couldn't taste any sweetness. It just tasted like carbonated water. Looking back, I have strong suspicions the Sprite was the culprit in my morning gut heaving. But, my point is that I have almost no taste, but I do have really strong cravings, which is why I got the Sprite in the first place. My mom just mentioned she almost got tuna fish, and that's all I have been able to think about. It sounds so good, but it's probably just as well I can't eat it, since it wouldn't taste like I imagine.

I am really looking forward to this all being over with, for the simple reason of being able to eat what I want, whenever I want, and to be able to enjoy it. Of course, for those who keep my nutruition in check, this does not mean McDonald's for dinner every night, but it does mean biscuits n' gravy if I feel like biscuits n' gravy.

Brian, your comment about this being the point in the race where your language and demeanor changes is quite punctilious. This week was a real struggle, but I am going to take these two days of rest and fight hard this next week. It will be nice to just have the radiation and not the chemo and radiation at the same time. This is definitely harder than I ever thought, but we don't have too much longer to go.

Thanks for all your support and comments. Each one means the world to me, and while I would have liked to have posted more frequently, I wasn't feeling well, but reading your comments really helped.

thanks

I haven't listed any individual thank you's so far because I have been truly uplifted by everyone's comments. I look forward everyday to see what people are saying and each comment you leave is truly a monumental present to me, no matter how small the comment. This last week was a tough week. I felt okay yesterday, but am back to not feeling so great today. While I'm going to go get in the shower and enjoy a shake and be in a fine mood for the rest of the day, all your comments help, also.

I did want to list three individuals to thank because they are three people everyone should thank. The first is Robert Renninger. Robert and I are good friends and ran cross-country and track and field together in college (and together pushed each other into more trouble than Seattle U could handle). Also, Robert broke my 5,000 meters school record in track in field, although I don't think he ever beat me in any race in college and I still have the 10,000 meters record. (See previous post about what a harder race the 10,000 meters is.)

But it was Robert who suggested I start the blog and set everything up for me. This was a great idea and has really helped me out. Looking back, I can't imagine going through all this without having this blog. I probably wouldn't have written this thank you this early, but Lydia rightly pointed out that Robert deserved a lot of credit.

That reminds me of one story from college. The track team was flying from Seattle to Boise in a very small plane, the kind with two seats on either side, and I had an empty seat next to me. A few other runners did too. Well, Lydia (a runner on the team) comes up to me from the front of the plane and says "Paula, (with her baby Ellie) only had one seat and had to sit next to someone, and that I should switch with her." Well, of course I felt terrible so I went up to the front of the plane and switched with Paula, only to see that right nearby Lydia had her aisle to herself. I said Lydia, "why wouldn't you have just offered," and she said that is was my job as the captain. The only reason I tell this story is to point out that Lydia has a knack of getting me to do the right thing.

The second person to thank is my Uncle Jim. Every single song that was ever suggested on the comment boards was put on a brand new iPod nano. Whether or not he could get the song on iTunes or not, he tracked it down and put it on. And most of you have your songs on your own playlist! Shelli, that meant he even put the whole Juno soundtrack under your playlist. I am looking forward to listening to all the songs everyone suggested. Also, I was really touched by what an incredible act this was for Jim. It meant a lot to me and won't soon be forgotten.

Lastly, I want to thank Tim Pickrell. Tim has been the epitome of selflfess through this whole process. For those of you who don't know Tim, he is a friend of my dad's. Tim lives in Phoenix, but as he says, he votes and his heart is in Pima county (where Tucson is). He is very involved in the University and lived in Tucson for many years. He still has a house in Tucson in a beautiful area, the Catalina Foothills. For those not familiar with Tucson, the City is surrounded on really all four sides by mountains. But the closest are the Santa Catalina mountains, with Mt. Lemmon being the largest mountain in the Catalinas at about 9,150 ft. Several times a year snow will cover the entire mountains, and Mt. Lemmon has skiing every year. The southernmost ski lift in the entire United States is on Mt. Lemmon, with the ski resort being "ski valley." So you can come down to ski if you want! It is actually open now, but the vertical drop is only around 900 ft, so don't expect too much.

But, back to my point, "the Foothills" area is a beautiful area to relax in. The desert surroundings are untouched, with no grass yards or anything like that. There are javalina, bobcat, and all sorts of desert wildlife around. From the very start of all this, when I was diagnosed with cancer, Tim has let us stay here, and has pampered us by fixing up the place with big screen TVs and new furniture. I can't imagine having to do all this in my small studio apartment. I will publish some photos to show how cool the area is, and Tim, it has meant a huge difference in my recovery and treatment to be able to stay at your house.

Of course, I should mention the unsung heroes: my dad, my mom, and Jen who have really had to endure all the hard parts of this. Without them I couldn't do all this, and yet they get almost no gratitude from me because I am usually in a bad mood around treatment time. I just want to say thanks to you guys and that I truly couldn't do this without you. You are directly responsible for my future success.

Amie and Ryan have been great, driving down every weekend to keep me laughing; it is a very long drive for Amie. Like I said, there are many of you to thank, and you should all know how much I enjoy your cards, books, visits, soups...so much support. Please keep your comments coming because I really do look forward to your words of encouragement and anything else to make the day brighter.

Also: I do plan on a post on the state of the economy soon and an analysis of what the candidates are saying.

10,000 meters

In track and field, the longest event run on the track is the 10,000 meters (about 6.2 miles). It's 25 laps around the track, and delivers pain to the runner in a different manner than any of the another events. The next closest event, in terms of distance but maybe not pain, is the 5,000 meters, which is 12.5 laps and requires more leg speed than the 10,000.

The extra 5,000 meters adds a significant barrier to successfully running the 10,000. The barrier is set up as this. From the start of the 10k the runners race along at a fast clip. The clip should not not be fast enough to tire out shortly into the race, but it also needs to be close enough to your fastest so that you don't wind up with too much gas left at the end of the race. So, a 10k runner wants to get into a rhythm up a very fast tempo and "zone out" until late in the race. It is important not to think about how many more laps are left, or how am I going to run another lap this fast 4 laps from now when I can barely do it now. The best strategy, in my opinion, is to treat the race like you are doing 25 quarters (1/4 miles) and each time you finish a lap just think: "I need to run this lap at __ pace." Soon enough, its the bell lap and you just need to kick home with everything you have left.

Of course, this is a very oversimplified version of an actual race. In an actual race there are obstacles: someone pushes you in the back, someone steps on you toe when the gun goes off, you can't get in a pack that is running your pace, people force you to do all the work, and etc. Or, the pack you went out with is running faster than you wanted, which tires you out too early. And probably the most common reason for a bad race is poor mental preparation. You are intimidated by the field; you are not used to running a distance that long on the track; or you mentally exhausted yourself thinking about the race all week. In running, being well prepared mentally can make the difference between first and last. For proof, see my performance at the conference indoor championships my senior year in the 5k, and my performance at the conference outdoor championships my junior year in the 5k.

What makes the 10k so difficult is that the body slowly accumulates stress, and at some point you have to make the decision to give in to all the fatigue that has set in, or go for it, hoping you have what it takes. In the 1500 meters I always felt the opposite. I loved the 1500 meters because you just went as fast as you could until the end. By the time your body was screaming to quit, you could tell it, "shut up, only 200 more meters to go." It's a lot harder to say, "shut up, only two more miles."

If you haven't noticed yet, I could have easily replaced "10k" with "cancer fighting" and the same analysis would be true. Its a long fight that involves constant energy and is constantly draining your bodies vital resources. Not only does the cancer do this, but the chemo and radiation are constantly pounding you. So, its not a fight like the 1500 where the pain sets in and you 2 days to go, it is a fight like the 10k where the pain sets in and you have 4 weeks to go. And every day you just have to tell you body-"just get through this day." Like in the 10k you can't think about "how am I going to do this in 2 weeks when I am getting my chemo again."

I am saying this, not because I am practicing what I am preaching, but I figure the more I try to preach a message, the more likely I will truly convince my mind I am right. Like Steve Prefontaine said, "Its the hardest thing is the world to truly believe in something." He's probably right. Of course, a lot of evil has been done in the world because of "true belief in a cause," but also a lot of good.

I was surprised that this week has already been so tough. I already mentioned the problems on Monday, and on Tuesday, I was told my white blood cell counts were too low. The medical oncologist said 4,000 - 10,000 is desirable and mine were 4,000. As a result, I am much more susceptible to getting sick, which means people need to be very clean while around me. We also need to be on constant watch over my temperature. Anything 101 or above is alarming, and anything over 100 for more than 30 minutes is alarming. Of course, when I was at home on Tuesday night I recorded a temperature of 101.7, and was able to eventually fight it off with Tylenol. One reason for having a high temperature is always that my body is working so hard to fight my inflamed mouth. While I was able to get my temperature down, I wasn't as successful with the food and lost a lost of the calories and food I worked so hard to get. That just makes things very frustrating. You keep thinking, "when am I going to catch a break," but now I think you should be thinking, "what can I do to be more successful." My mom always said something like, "God rewards those who work" (in an attempt to get us to clean house). But in general, its probably better to go out and make good things happen than to wait for them to come around.

So, tomorrow is a new day and I have a 1/4 mile race to run.

I originally started this post to tell what is arguably the most inspirational 10,000 meters race: the 10,000 meter finals at the 1972 Munich Olympics. The race was won by Lasse Viren, who would also win the 5,000 meters that year. However, Viren was not the favorite in the race. There were several outstanding runners, including Mohamed Gammoudi, Emil Puttemans, and the favorite, David Bedford. While most 10k championship meets start off slow, with no one wanting to do all the work of front-running, while the others save energy by drafting, this race started off at an alarming sub 61 second quarter mile by David Bedford, and the runners became very dispersed very quickly. However, a small pack remained attached to Bedford. This blistering pace continued, and about halfway into the race, tragedy struck Viren: Virens feet got tangled with Putteman's and he fell off the track. Gammoudi also fell down. What is amazing is that this would be crushing and mentally jarring to most runners. Not only did you stumble and fall, but you have to expend what seems like an insurmountable amount of energy to catch up with the lead pack that left you in the dust. But, not even for a second did Viren hesitate, he got right up and chased down the lead pack. With 10 laps to go Viren surged to take the lead from Bedford, but Viren found himself continuously challenged by other runners. Several other runners took the lead from him, trying to drop him. At the final lap, it was Puttemans and Viren, and the small Belgian runner proved no match for the tall lanky Finn. Viren crushed Puttemans in the home straight, and did so in a world record time!

You can get down and still do amazing things if you get back up.

bad nurse

warning: some material may be nauseating

Yesterday was probably my toughest day so far and I blame a lot of it on a new nurse giving me my Ethyol injection (to protect salivary glands). I will just tell you she said this and you should be able to form a pretty accurate description of her: "I was thrilled when my kids said they wanted to move out and go live with their dad. It meant I could go do everything I wanted."

The problem was she also showed me how to use my PEG-tube (feeding tube). Its really not that complicated, you just take a syringe at squirt whatever you need into the tube. For some reason though, she took the syringe and instead of pushing, pulled, and in turn this pulled everything out of my stomach and into the syringe. While this was unbelievably gross, it was also a terrible feeling to have everything sucked out only to be put back in. She told me "sometimes its nice just to see what's inside the stomach." This goes against my general philosophy that its never nice to see what's inside the stomach. That's one of the things that makes throwing up so bad.

I blame this on why I threw up for the first time last night. It wasn't very normal though. It was a lot of blood and mucous. I am sure most of you don't like hearing about this, but its what happened. I felt awful for the rest of the night but feel better today.

I also feel bad because my cousins Billy, Danny, and Patrick came down and I didn't really spend much time with them because I started to feel so bad. I just wanted to let you guys know that I did appreciate it though, and loved watching the amount of "Groundhog Day" we did. Its a pretty "sure as heckfire" way to get in a good mood by watching a Bill Murray movie.

week 2

Even though I was slightly peeved with the humidifier debate in the waiting room the other day, I am now thinking it might be a good idea because my mouth is getting really dry at night. If week one was hard because of the chemo, then week 2 was hard because of the radiation. My mouth and throat are constantly on fire, which even with the pain medication, makes it very hard to eat and sleep. I am still hoping to get through next week without having to use the feeding tube.

As far as humidifiers goes, the Air-O-Swiss Ultrasonic 7133 seems to be the Cadillac DeVille of Humidifiers, meaning you are not quite willing to pay enough for a luxury humidifier, have to be over 65 to purchase, and should expect to take it into the shop frequently; however, when it is performing well you should strap in for the ride of your life. Of course, you can never go wrong with the Vornado Vortex HU1-0013-11. It's obviously the industry classic.

It was Tuesday when I noticed my throat really started to hurt and Wednesday I developed a lot of sores in my mouth. From this, I constantly have a large amount of film in my mouth that I get rid of by rinsing with a water/sodium bicarbonate and a water/sodium solution. Also, the pain has made it too difficult to talk. So, I pretty much don't talk, but I seem to be put in more situations where I am expected to talk than before. I was hoping the mouth situation would improve from the two days off this weekend, but it really hasn't.

Still, once I get through this week, I am pretty much half way done! Also, I don't have to do chemo again until the week after next, so things are still looking good.

song comments

You guys are doing a great job with the songs, and I was thrilled to finally see some John Prine, Ellen! My addition would be "Dear Abby" by John Prine. It's always a song that reminds you to be happy whatever your situation.

I just have to make 3 clarifications to what people have posted:

1. Many people are thinking singing "since you've been gone" to someone going through cancer is insensitive, but we have to assume Danny is referring to the cancer being gone.
2. Breanne came through clutch and seems to be hipper than her sisters. We also have to view her choosing a band called "The Killers" as appropriate if we think about that referring to the chemo and radiation being cancer killers.
3. If you think I am going to download a song with both the words "Regan" and "sucks" in the title then you might as well go renew your WNBA season tickets.

Also, I have a song I thought someone (Jim, Beanie, or my Dad) would have thought of that to me is about the ultimate: Tom Waits -- "Hold On." Jim based on this one submission alone let me know what place I'm in. Also, did someone give Bean a link to this site?

Below are a sample of the lyrics:

Well, you build it up, you wreck it down
You burn your mansion to the ground
When theres nothing left to keep you here, when
Youre falling behind in this
Big blue world

Oh you go to
Hold on, hold on
You got to hold on
Take my hand, I'm standing right here
You got to hold on

Down by the riverside motel,
Its 10 below and falling
By a 99 cent store she closed her eyes
And started swaying
But its so hard to dance that way
When its cold and theres no music
Well your old hometown is so far away
But, inside your head theres a record
Thats playing, a song called

Hold on, hold on
You really got to hold on
Take my hand, I'm standing right here
And just hold on.

two days into week 2

You guys have been great with the song updates and keep them coming. I have a feeling the battle isn't over between Jim and Lindsay.

As for the treatment things are going ok, and I got some good news today. Yesterday I had an MRI to investigate the reasons I have been having bad headaches for the past month. There was a very slight worry that the cancer could have spread to the brain, but the results today seemed to have ruled that out. I will have to talk with the medical oncologist soon to fully understand everything though. But it was a relief to finally get some good news, especially when every test up until now has come back negative! I feel like now we got the ball going from downhill to uphill.

Of course we still need to find out what is causing the headaches. My three leading causes are:

1. Valley Fever, Tuberculosis, or Cancer
   
2. Turning on the tv and listening to any discussion on economics or the economy
3. The fierce debate over the merits of humidifiers that ensued in the radiation oncology waiting room today.

The treatments are going fine. I am starting to get tenderness in my neck from the radiation and it hurts to swallow. Also, I am bleeding a lot more. Last night it was from my nose and this morning it was actually around the toenail. Apparently that is a common reaction to the chemo therapy.

My mission is to keep the weight on though, so I have been trying to eat a lot. If I lose too much weight then they will have to pause treatment, which would be really bad. Today one of the radiation techs told my I was looking thin, which was a real shock because I am used to people saying how big and ripped I am. So, I guess I better go eat.

Songs

Jen thought of a great idea the other day: if you want to, I would love for you to post a song that you think is inspirational, energetic, or helpful to my situation. I have a lot of time sitting around getting chemo, waiting for radiation, and etc. and would like to make a power playlist on my iPod.

Think hard. This is an important mission. Also, I have dibs on the Office theme song as my choice.

first week down

Well, the first week is pretty much down, because in two hours I go to the Cancer Center to have this chemo drip removed. This week I got a dose of Cisplatin on Tuesday and then since Tuesday I have had to carry around this bag of chemo (5-FU) that continuously drips into my body. I would have liked to have posted earlier, but this drip makes me feel really nauseous and tired--so I haven't felt the greatest.

I have been blown away by the amount of support for my blog though! Watch out Perez Hilton, my number of hits are getting pretty high. Seriously, I enjoy reading everyone's comments and wish I had the time and energy to tell each of you how nice they are. I think I have said this before but the silver lining in all this is knowing how many people truly care about you. I hope I can repay the favor one day.

Tuesday was one of the biggest days so far. In the morning I had the port put in. It is a pretty simple surgery, but all surgery is scary, especially when it takes place around your heart. What a port is, is basically a permanent IV except instead of going into a vein it goes directly into your heart. The 5-FU is so strong, that it could corrode or destroy a vein if injected into it. Instead, it needs to be sent right to the heart to be distributed to the body.

The surgery involves carving a little piece of of your breast where the port goes. Then, an incision is made near the very base of the neck into the major vein that goes to your heart. (I think vein and not artery-- veins take blood to the heart and arteries away?) The doctor then threads a wire down to where the vein meets the heart. Then, over the wire a catheter is placed. Lastly, the catheter is bent at the top to meet the carved out portion of the breast where the port goes.

The same doctor who did this did the PEG-tube surgery, which I will describe later because it is a little cooler. I have to say that I have never really had too much of an interest in medicine, but I have grown to appreciate it a lot more.

After the surgery I went and got radiated for the second time. I expected all the sedatives from the surgery to still be in effect while I was being radiated, but I got really claustrophobic again and had to be given a shot to be sedated. Every day since then though, I have take two valium and have been fine. I will try and post of a picture of me being pinned down to the machine by my mask so you can get an idea of how claustrophobic it would be. Also, starting on Tuesday and for every day onwards, I get a shot of a drug called Ethyiol which is designed to protect your salivary glands--without it most people lose their salivary glands.

The last part of Tuesday was the Cisplatin injection and starting the 5-FU drip as described above. The people at the Cancer Center were amazing. As far as personal treatment goes, the nurses at the Cancer Center have been as good as you can get, and that makes all the difference when going through this.

first day of radiation

I was supposed to start radiation and chemotherapy today but only started the radiation. Under the guise of waiting for my port to be put in, the medical oncologist's office decided to wait until tomorrow to start the chemo. In the morning I will have the port put in and then have chemo and radiation in the afternoon.

The problem was I am getting two types of chemo: cisplatin and 5-FU. The first is a typical chemo drug that will only be delivered three times at three week intervals. The second is given through the port 24 hours a day for four days straight. So, we were going to wait on the 5-FU, starting tomorrow, and start the cisplatin today. But, the office thought we might as well just start both at the same time, tomorrow. I countered with what I thought was a better argument, saying that really we might as well just start the cisplatin today and the 5-FU tomorrow, as originally planned. That led to the real truth that they didn't have a room available to do the chemo today. Plus, they probably weren't willing to do me too many favors because I left several blunt messages in the morning asking why we weren't starting today.

While I was not nervous for the radiation, I did panic a little when they put the radiation mask on me. The reason is that it made me really claustrophobic. The mask goes from mid-peck to over your head and is made out of a mesh material that is as hard as a cast. They lay you down on the TOMO machine (my type of radiation machine) and pin the mask to the bed you are laying on. The problem is that when they peg the mask down, there is an incredible pressure on your face including your nose and mouth. This makes it very difficult to breath and it also immobilizes you. With the mask being over your face I got quite claustrophobic and we had to have a few takes and an eventual tranquilizing shot before we were successful in doing the treatment! The treatment itself involves a 20 minute CT scan (every time) to map out the radiation and to make sure the radiation isn't hitting dangerous areas things like you spine, and then just 5 minutes of being radiated.

Hopefully things are better in the future, and I have some medication to take beforehand to keep me calm. There are no signs of some of the bad side effects yet. At some point my mouth should get really rough, but I am feeling no side effects now. I will update after chemo and radiation tomorrow; it will be a bigger test.

more background ...

My diagnosis has changed since then, and I will be starting chemotherapy and radiation tomorrow.

The oral surgeon referred me to an ENT (ear, nose, and throat doctor) since ENTs have a better knowledge of the entire head and neck. Since this is the area my type of cancer typically spreads to, an ENT is better suited to perform the surgery.

My ENT was very confident and a good doctor, but looking back we might have done things differently. What we decided to do was to get into surgery right away, which is desirable because you want to keep things from spreading. Surgery involves two parts: the first part is using a laser to carve out the cancerous piece of my tongue as well as a "good margin" around it. After this is done, the piece of tongue is sent to a lab to make sure the margins are good. While this is happening the ENT performed a neck dissection; this involved cutting from my right ear to the center of my neck and taking out 26 lymph nodes in the upper neck. This is really done for exploratory reasons--to see if the cancer has spread to the lymph nodes. In almost all cases the cancer only spreads to the lymph nodes on the same side as the primary cancerous area. One doctor explained your body as a divided highway, and that the fluid coming off the tongue from the right side drains to the lymph nodes on the right side. There are actually about 50 lymph nodes from your ear to the upper neck on the right side alone; however getting all those lymph nodes involves a deforming surgery and does not offer any more real benefits.

The surgery apparently went really well, and the surgeon was happy with the margins on the piece of tongue he took out. (My own opinion of the surgery was that it sucked and it hurt like hell to swallow for a week.) After about two weeks though, we got the bad news that one lymph nodes came back cancerous. But, the cancerous part of the lymph node was only 4mm and it was very close to the right ear, which is the first place the cancer could really spread to. This did automatically place me in the 4th stage of cancer (the last stage), but the ENT didn't want to jump into radiation because the cancerous piece was so small and in a "good" location. In other words, it looked like we were in the clear even though it had spread to the lymph nodes. I should also say that I have an uncle who is the dean of a medical school who shared the reports with some of his doctors and they all agreed to wait on radiation. One of the factors was my age. Radiation on the head and neck is harsher than other areas due to all the sensitive material in your head and neck. Also, parts of your body have a certain tolerance on how much radiation they can handle. So that if I got radiation on the head and neck now, I probably couldn't get it on that area in the future in the event a recurrence did happen.

Again, the odds suggested we took care of everything. I was sent to a radiation oncologist and the University Medical Center (UMC and U of A) for a consultation, and he concurred that I was probably cancer free. However, he did stress that we could not declare victory for five years. The reason being that if the cancer did spread to other areas of the body it would take up to five years before it was big enough to show up on a scan. And if this did happen, my survival rate would plummet. Once cancer spreads it is very hard to contain.

As a safeguard, I was sent to get a PET-scan to verify there was no cancer left. At this point, I was hopeful, but willing to accept a positive result. Still, despite my doubting the results would be negative, I was crushed when they came back positive. I just felt like there was no end to the bad news. Its not a good feeling for every piece of news to get your hopes up only to have them crushed. First, the oral surgeon doubted that I could possibly have cancer- wrong. Then the ENT doubts that the cancer could have spread- wrong. Not that they were errant in their decision making, because I am a rare case. Twenty-six year old non-tobacco users generally don't get cancer, and if they do and its treated quickly the success rates are very high.

The results showed that I not only had a region of positive lymph nodes on the right side, but also two positive lymph nodes on the left side. This was unexpected. For the right lymph nodes to be positive was alarming but not too remote a possibility, and for the left lymph nodes to be positive was a serious matter and cause for concern. The concern is that if the cancer could spread from the right to left side of you body then where else could it have gone to?

While I took this is bad news, the ENT was sent this results via the radiation oncology people, and he took it as false news. He said he flat out didn't believe it, asked me to come to see him, and told me I needed a fine needle aspiration done on the lymph nodes. This involves using a needle to take a biopsy. The doctor simply takes a needle, sticks it in your neck, uses it to get a piece of a lymph node, and then analyzes the piece for cancer. The whole process only takes a few minutes, which meant I only had to wait a few minutes to get more bad news--the lymph nodes were cancerous.

I should explain really quick that PET-scans just pick up areas of your body that are overactive in processing sugars. So your heart, brains, testes (if you have them), and etc will all show up positive. If you are sick then your lymph nodes will also show up positive because they are working harder than usual. The ENT was so convinced that I was sick, that he sent me out of his office with antibiotics, and said he didn't believe this could be cancer.

I am too tired right now to describe the emotional blow of again having your hopes shot up like Roger Clemens' veins only to have them shrunk like his private parts, and I feel bad that my blog so far has been as exciting to read as the pathology reports I have gotten back. In the future I will try and provide a little juicier material.

I should also say that I am still very optimistic about the future. Things are more serious than I like them to be, but there are still a lot worse things that happen in life than having cancer and going through surgery, chemo, and radiation. I look at my sister whose boyfriend was killed a few years ago, and think I would much rather go through this. Everyone has to undergo their own trials in life, and I consider myself well-equipped for the battle. You have to remember that I was a member of the Seattle University Redhawks Cross-Country Cavalry and we did battle almost every Tuesday, Thursday, and Saturday. The endurance, courage, fearlessness, dedication, and will to fight that I developed as a runner are tools that I will use to be a success in this battle also.

My second strength comes from all of you who care about me and my situation, have taken the time to read this, or take the time to think about me during your day. Since you should always take away the positives from a seemingly dire situation, mine is that I am fortunate to be surrounded by a lot of people who love and care about me.

I will keep updates coming throughout the radiation and chemo process, which starts tomorrow. You don't need any more boring details on what happened to set all the chemo and radiation stuff up. If you want a general impression imagine trying to get a license to start a business in the former Soviet Union!

long background on what has happened so far

If you are reading this then you probably already know I have cancer, so I just want to write down a brief summary of what has lead up me writing this today.

In late September I noticed my tongue hurting an abnormal amount. I complained about it to Jen (because complaining makes dealing with pain easier), and she asked if I had looked at it yet; my response was no. It seems like a no brainer now, but I don't know why I wouldn't have looked at it. When I did, I was shocked to see a white lesion on the right lateral side of my tongue. This wasn't too shocking for me at the time, because I am a teeth grinder, and I thought I must have ground on it in the middle of the night.

That weekend I went home to Phoenix (from Tucson) for Ryan's birthday, and two of my aunts and my mom looked at it also. They all said to go to the health center on campus, and my aunt Maryanne was the first one to utter the words, "It looks like cancer." Although that was frightening to hear, I didn't think it was likely to be the case.

I did go to the health center when I got back in town, which I knew would be fruitless since I didn't have a bacterial infection, virus, or std, and thus was out of the range of expertise of doctors at the health center. This was confirmed when the doctor who saw me said he had no idea what was wrong with me, except he was certain I didn't have cancer. He thought it was best I saw an oral surgeon.

I was referred to an excellent oral surgeon who has been wonderful through this whole process. She said I probably had one of three things: valley fever, tuberculosis, or cancer. To which I told her "we aren't playing 'The Oregon Trail.'" That part was made up and if you didn't play the Oregon Trail computer game in grade school probably isn't funny; in fact it's only borderline humorous if you did play it.

While I joke about it now, it was one of the scariest things someone has said to me in my life, and it was one of the scariest and most emotionally destabilizing things I have heard. If it turned out I had valley fever though, the consequences are really not serious for almost all individuals. In fact most people in Arizona will have valley fever sometime in their life without ever knowing it. Of course, almost every person alive has cancer cells in their body, they just aren't beyond a critical mass that makes them pernicious. The oral surgeon said what I had looked just like cancer, but that for a young, non-tobacco user like myself the probability of this being the case was very small. Instead she thought I had valley fever. To find out what was going on, we did a biopsy of the tongue (painful), and then I went back to the health center to do blood work to see if I had valley fever. (I should also say there was also an outside chance I really had nothing.)

It seems weird to say this, but before I got the biopsy back, I got the bad news that I did not have valley fever. I say bad news, because of the three things to have that was the "best." At this point I really started to worry about what was wrong with me. After, a nerve-wracking few days, I went back to the oral surgeon with Jen and my dad, and got the bad news that I had oral cancer.

I don't think I could accurately characterize how frightening this was. I started crying hard immediately, because cancer is such a terrifying word. As all this has unfolded I have learned a lot about cancer, and now know that cancer is an apartment complex that houses a multitude of different diseases, all different, all requiring different treatments, and all differing in survival rates. I was diagnosed with well differentiated squamous cell carcinoma on the right lateral side of the tongue. The size of the tumor was T2 (out of 4) although I would later find out it was "only" T1 and that the rest of the tumor was just scar tissue.