Tuesday, October 23, 2007

The fun part of cancer is over


'The cuckoo who is on to himself is halfway out of the clock."
- Wilson Mizner, playwright

I've got 21 of 35 radiation treatments done, and 2 of my three primary chemo treatments under my belt, so I'm really past halfway here.

I've been pretty lucky with my chemo treatments so far. I have tolerated these without much nausea (caused by the chemo) and without much trouble except for some permanent high frequency hearing loss and ringing in my ears. As an avid target shooter, this was probably in my future anyway. Honestly, it's not bad because it doesn't interfere with conversation and I know in time I'll get used to the ringing and tune it out.

The radiation side effects have been very rough, though. I can't lie. The radiation has burned my throat and made my mouth a little raw, leaving me with a constant briny taste in my mouth, but the worst part of this that I have a constant heavy amount of phlegm. I know gross. This is more than just inconvenient, though. It's overpoweringly nauseating, requires me to constantly cough/spit it up, and has made it impossible for me to eat, sleep, or talk.
It's my biggest cross to bear in the whole treatment. Medicine has been ineffective to combat this. Fortunately, this will slowly disappear after the radiation treatments stop and is not a permanent side effect.

I knew from reading other posts that around Week 3/4 things would get pretty hard, and here I am in Week 5, with a few weeks of treatment to go and then recovery after.

There are times when you struggle to take in calories through your feeding tube, just to get sick and lose all those nutrients. Your eyes water from vomiting and you feel awful. I give myself two minutes to feel sorry for myself, and then chill for a bit and then get those calories (and hydration) back in there. Getting sick is more a matter of inconvenience than any sort of grossness for me now. It physically burns a bit, but then you rinse with baking soda/salt/water and get right back in the fight.

Similarly, it can really suck when you get your shower and are heading out the door for treatment, and then the cap on your feeding tube pops open and you spill Ensure all over your shirt, pants, etc. Sometimes, it will happen again right after you've cleaned up and changed from the first incident. These times just show me that God loves to fuck with me, and has a great sense of humor. What matters is that you just gotta do what you gotta do. Get changed, get that food and water back in you, and go about your business. Cursing and blowing up doesn't help . . . I've tried it.

Sorry to share this unpleasantnesss, but I wanted to be honest on this blog for people who are going through this sort of thing later. I want people to know what to expect and honestly how it feels to go through treatment.

All the same, when I keep my mind engaged I can forget about the side effects for short bursts and let my thoughts take me to the world outside cancer. I think about things like my Daytona Coupe, fantasy football, the theater company that I am a part of, and many pleasant memories of travels and good times. Either that or I watch an episode of It's Always Sunny in Philadelphia and just laugh for a half-hour.

This cancer-fighting game is a battle of endurance. I can definitely outlast the treatments, and still keep my spirits intact. I just pray that all this hardship is not in vain, and that we get rid of this cancer and it never comes back. It would suck to go through all this and still lose to cancer.

Sunday, October 21, 2007

Yum


Right now, I would really love to have a buffalo chicken baja wrap with lettuce, tomato and ranch dressing, as well as some golden brown french fries.

I've already decided that after my treatments conclude and I can eat again, I'm going to become a fat guy.

Friday, October 19, 2007

Week 4 Wrapup

"Do something that scares you everyday."

OK, this used to be my motto to live by, but I think I've taken things a little to far with this whole cancer fight thing.

I'm hanging in with the fight, but things are definitely harder. It's rough not eating anymore, but I'm thrilled to be getting all the calories and hydration I need through my tube . . . rather than fighting and losing trying to eat by mouth. Still, I have to be sure to take some shake by mouth, or I'll lose my ability to swallow. It's tougher than you think, because right now my throat is sore, it always feels like I've got acid reflux going on, and everything I eat tastes . . . well, let's be kind and just say awful. Nevertheless, I have to keep the swallow mechanism operational, so that a couple months from now I can get back to Nick's Roast Beef sandwiches, Chick Fil A, sushi, and all those goodies I miss so much.

I've finished my #19 (of 35) radiation treatment, and have 2 of my 3 primary chemo sessions complete. There is definite progress on my lymph nodes shrinking and all, but honestly I'm beyoond being excited now. Now my job is just to be tough and to endure the side effects of the radiation and chemo. It's not easy not being able to really talk, eat, and even have the energy to live my normal life. Then again, I knew this part would be tough . . . tough and temporary. In another month, these treatments will wrap up. I'll begin recovering which will take a while, but I know that better days lie ahead.

There's so much I can't wait to do, and I feel such a massive debt to my caretakers. My mom, Kristina, Shelly, my Dad, my brother, they've all been unbelievable to me. I have no idea where they find the courage and strength not only to help me with tasks, but to smile and encourage while they do.

I'm very grateful to have them.

Wednesday, October 17, 2007

Half way There

Sorry to all for not having a wonderful quote to start this post. Today is an important day for Dave he is 1/2 day over being half way through the radiation treatments. The past week has been a tough one but Dave is handling in Dave style. Monday was chemo day and Dave took that chemo with sheer determination and even smiled a few times. The side effects of the radiation are worse than the chemo. All feedings are now via peg tube. He does try and drink at least 12 ounces of liquid a day and so far is not suffering from any severe nausea or vomiting. The mucusitis is the worse for him and last night he had to sleep sitting up. Not a lot of words are spoken (mostly written or signed words) but when Dave speaks it is with that same lovely voice as always. Dave appreciates all your prayers and well wishes and this is what will get him through. The schedule for now is 3 and 1/2 weeks radiation and cisplatin dose 3 in 3 weeks. After that will be the 3 rounds of 5FU and then he will be done with treatment. Soon Dave will post again. Thanks to all and PRAY HARD.

Saturday, October 13, 2007

"His sickness increases from the remedies applied to cure it."
- Virgil, Roman poet

Forgive me for not posting the last few days, but I've had a pretty rough go since my last post. Plenty of nausea and vomiting, my throat and mouth becoming increasingly sore, and my ability to eat all but gone. Every time I toughed it out to force down a bowl of soup or shake, I would get sick and lose the precious calories and nutrients I need. Even drinking water was difficult and I became pretty dehydrated. A little of the hair on the back of my head also started falling out. All of these things are expected, but none are pleasant to go through.

Yesterday, I started using my feeding tube. It makes it a lot easier to get water and food in . . . but I still need to drink at least a shake or two a day to keep my swallowing mechanism operational. With the radiation, you can actually lose your ability to swallow if you don't use it. So, I will be sure to drink at least one shake a day to keep this working.

I'm actually glad to use the tube right now, because I've had it hanging out of me since the end of August and it's been nothing but an inconvenience. At least now, it's serving a very useful purpose.

This week has been a struggle, and it's left my body pretty beat up. I just know that the cancer is hating the treatments at least as much as I am. Whereas, I've lost 10% of my body weight, the nodes on the side of my neck are probably 1/4 or 1/3 of the size that they were before. My throat is so ripped up that I can't imagine anything could live there, so that nasopharyngeal cancer picked the wrong place to squat.

Now I realize why having a positive attitude is critical. You need it when you feel pain and severe discomfort. To fight to get your calories, even though it hurts to eat/drink and you've already thrown up your last two meals. You need to keep fighting through it.

The love of my support team helps me get through it, and so did a cute little message that a kid put up on a dry erase board easel at the hospital. It said, "Keep trying. God loves you." It was simple, cute and very timely.


Tuesday, October 9, 2007

Sweet Distraction

“It's a massive motor in a tiny, lightweight car.”
- Caroll Shelby, creator of the Shelby Cobra, Daytona Coupe, and Ford GT40

My appetite's dropped off a bit, and is somewhere between my ravenous weekend appetite and the pathetic state I was in before. I'm pretty sure that I'm doing the 2700 calories that I need. My energy's been ok, and I've still battled nausea from time to time. Unfortunately, the inside of my throat is beginning to get increasingly sore.

Fortunately, I have plenty of incredible things keeping my mind off my present condition. Besides unbelievable companionship with Kristina, Shelly, my family and friends, I have a couple of great passions that I'm turning my attention to right now.

First and foremost is my Shelby Daytona Coupe replica car build. Last November, I bought a frame, body, and other kit parts from a company called Factory Five Racing. In addition, I bought a Ford Racing crate engine, a 392 cubic inch monster, along with a TKO 600 transmission, and loads of other performance parts from Ford Racing. Since then, my father-in-law Bill and I have been building what promises to be the most beautiful, high peformance street car ever made. Right now, we are 99.9% done, and just waiting for the body to come back from the paint shop so we can reassemble the car. Driving this car, even just starting it up in my garage will be as important to curing my cancer as radiation or chemotherapy. I'm telling you.
It has been a long 11months getting this car built, and my mechanic father-in-law has done the lion's share of the work.

Right now, I spend time in the waiting room thinking about the finishing touches I'm going to put on the car, imagining what it will look like with its sleek black paint. Working with my father-in-law on the car was a great experience. I've sunk a ridiculous amount of money into this car, with thousands left to spend, and at this point, I just want to have the car done and road ready. I can feel it. We're so close . . . just in time for winter, which aint prime sportscar time. No matter. I will spend a lot of time in my garage just staring at the car, or just sitting inside. OK, I'll probaby make the occassional vroom=vroom noise when nobody's around.

In any case, I wanted other patients who might read this blog later to know that while you're in treatment, life goes on. By embracing the things you love, chemo and radiation are kept in proper perspective.

Sunday, October 7, 2007

Feed Me

"The poets have been mysteriously silent on the subject of cheese."

~G.K. Chesterton


OK, since Friday my appetite has been back . . . which is really weird because my taste buds and salivary glands have been zapped pretty good with radiation. I can no longer taste a lot of foods, even favorites like cheese. My mouth is pretty cottony these days. Still, with this going on, I've been eating like a bastard all weekend.

Pizza, cheeseburgers, milkshakes, ice cream, canned peaches (I love these nowadays), filet mignon, WaWa hoagies, New England clam chowder, French toast, bacon, bagel sandwiches, and even sushi (which was delicious) have all made their way down my gullet this weekend. Let's just say I had no trouble making my 2700-calorie/day goal this weekend.

My energy level and spirits have been pretty good. I've experienced some nausea here and there and I definitely feel my gums and throat are getting more raw and burned. In another week or so, they'll be a barrier to eating that I'll have to overcome. For right now though, all the eating of this good food is helping to fight infection and keep me strong.

With my dry mouth and taste buds zapped, I think this is what life is going to be like for me for a good long while after my treatments, and honestly it's very liveable. I can't talk for long without my mouth getting too dry, which is great for everyone else around. Finally people will be able to get a word in edgewise. Seriously though, I think it will help me be more judicious with my words.

I've got two of seven weeks of radiation behind me, and one of three of my first chemo treatments. Slowly but steadily we're getting through the treatments, and before I know it my treatment experiences will be nothing but a memory.

Thank you all again for your loving words and support. It means so much to hear from old friends, co-workers, and general well-wishers. I know your words also help my family and loved ones know they're not alone. God bless you.

Friday, October 5, 2007

I Feel Great

“Quotation is a serviceable substitute for wit.”

= Oscar Wilde

Last night, I had a vanilla malt milkshake. My nutritionist would love the calories. My dentist would warn me about cavities. Screw them both. It tasted good and I loved it. From there, things just got better. I had a decent sized dinner of chicken casserole and mac & cheese, and peaches. I housed the stuff and drank a bunch of water.


I haven't felt as nauseous or fatigued the last couple days now, and I'm hoping that I've battled through my initial round of chemo and will have a week or so before my radiation and next chemo dose hit me.

All I know is that today I feel like a human being again, and I love it! I drove out to WaWa and bought a turkey hoagie, Smartfood popcorn, and a Tollhouse ice cream sandwich for lunch today.

So, yeah, there are bad days . . . but there are good days, too. Days like today.

Thursday, October 4, 2007

Hmmph

OK, so today I went in for my #8 radiation treatment and then to meet with my chemo doc for our regular blood work and follow up. I had a bit of bad news on both fronts.

#1: I lost 10 pounds. Mind you I had put on a couple extra pounds right before treatment, but weight loss is not good when y0u're fighting cancer. You need calories and nutrients to beat down the cancer. My doc is not panicking, but he did tell me to put in more effort and we'll see where we are next week.

#2: My doc confirmed that my nasopharynx cancer is EBV-related through my blooodwork. My DNA shows that I have been carrying an EBV-mutated gene that has caused my cancer, probably for a few years now. What does this mean? Unfortunately, compared to EBV-negative nasopharynx cancer, I am about 40% more likely to see my cancer spread distantly and less likely to survive. This is no reason for us to give up the fight. Not at all. The only real setback here is that it would have been nice to have been one of those non EBV guys, because I'd have an easier time of things. Instead, I know where we stand and because the large number of NPC cancers are EBV-related, I'm pretty much right where I was before . . . just one less miracle to hope for. I guess I'll have to go the old-fashioned route and beat it with faith, grim-determination and . . . I know, nutrition. Who wants to win the easy way anyway?!

“Living things have been doing just that for a long, long time. Through every kind of disaster and setback and catastrophe. We are survivors.”


- Robert Fulghum

Wednesday, October 3, 2007

I've had a rougher patch than I thought for this early in the treatment. The first few days were not terrible, but I've been sick and exhausted a lot more than I thought since this weekend.

Last night I was running a dangerous fever. You see, during chemo your blood counts drop and you are very susceptible to infection for a period of usually a few days. During this period, the doctor tells you to go to the emergency room if you run a fever of 100.5. Last night, my temp (normally 97.5) was up to 100.1. My head was thumping and I was quite nauseous. The nausea hit me quick and I got sick, then took my anti-nausea medicine. I hadn't really needed it until now and the nausea just hit me so quick.

I'm no martyr, believe me. Now that I'm feeling nausea, I'll be taking those medicines. Until now, I just hadn't needed it.

My appetite's still pretty pathetic, especially for a guy who is usually a championship eater like me. I'm doing my best to eat and that's all I can do. I'm trying everything. Smaller more frequent meals. Favorites. It's just hard to force feed myself right now. I'm taking in what I can, because I know it'll get tougher as the radiation burns my throat, salivary glands, etc. even worse. Believe me, I'm trying to get all the nutrients I can to heal me.

My spirits have been better the last 24 hours or so. It's great hearing from everyone on here, and with cards and everything. People have really touched me with their gifts of Faith and spirituality. It's really touching that people are giving me their most powerful positive thoughts and prayers at these time. These beautiful acts really help give me hope.

“Hope is faith holding out its hand in the dark.”
- George Iles, American author

Monday, October 1, 2007

This Just In: Cancer Not Fun

Amazingly cancer treatment is not exactly a pleasant experience. All in all, I believe I've had it pretty easy, but his weekend I had a few unpleasant episodes . . . but hey, this is chemotherapy we're talking about. Radiation?! They don't put stomach tubes in you for fun, you know.

It's like Horace says, "Nil desperandum." Never despair.

Since my last post, I've been VERY tired almost all of the time. My ears are constantly ringing, and my throat and nasal passages are not allowing me to breathe real well. This in turn causes me to cough a lot, popping the cap off my stomach tube and leaking all over myself. Yuk. I know. I'm finally getting to the point where I just accept the inconvenience of this, rather than be worried or grossed out.

I've been trying so hard to eat, even when I'm not remotely hungry. Honestly, I think I've been pushing myself a little too hard.

Until now though, cancer treatment has just been exhausting, inconvenient, a little messy and uncomfortable. Not massive, unendurable agony or anything like that. It's already not very much fun though. It will be amazing to have this behind me some day in the coming months!