Wednesday, September 28, 2011

by the way

I solved the "nothing rhymes with 'orange'" thing.

Door hinge.

So there's that.

I don't have any news. Just here waiting. I did find these pictures buried in my email. I added some for a mini timeline.

This one is from the first day after surgery. May 13, I guess, but it could be the 12th.

The only sleep I got

Leavin the Pit of Despair
Radiation Graduation

Need more chin whiskers

Sunday, September 25, 2011

Screw Your Weak Sugar

Tomorrow I get my pet scanned again. You know, that whole - inject radioactive sugar in your veins so you can pick up cars like Doc Oc - thing. All the kids are doin it. I don't get the results till next Monday.

I've been eating like a fiend. Still can't taste most sweet things. Fruits and ice creams are pretty boring. Vinegary and other tangy/spicy foods work well.

Completely different:

Flaming Lips have issued a six hour song

Monday, September 19, 2011

"I am in fact, a hobbit in all but size"

Dramatic improvement in the last couple of days. I have been craving pancakes for some reason. I don't even really like pancakes all that much, but the thought of them has been growing in my brain for days. I finally decided that I'd deal with it, so I tasted the syrup we have in the fridge and I could taste it! No more reason not to head out and get some.

As it was 9pm and dinnertime, we all piled in Kev's truck for Mr. Toad's Wild Ride to the nearest Denny's.  I ordered the Build Your Own Slam - 2 pancakes, 2 eggs, hashbrowns and sausages and a glass of strawberry lemonade. I should have ordered the eggs over medium, because over easy was too runny. I couldn't really taste it anyway. Shoulda got them scrambled so I could dowse em in ketchup as I did the hashbrowns. Those were good. The sausages were not. Old and chewy.

The pancakes, for which I'd craved, were light and fluffy, but the syrup was obviously imitation maple because, unlike the real maple syrup I tried at home, I couldn't taste a thing. This and the cakey quality of the pancakes made eating them a futile effort. Irony, that.

Regardless of the small disappointments, the overall mission was a success. My first real meal in 2 months and I could taste most of it, though, admittedly it was the ketchup that saved the meal. I ate everything except the sausages and half the pancakes. A little return to reality afterwards. I was fairly worn out by the time we got home, but still happy to be making improvements.

I have an appointment with Dr. Woo on Wednesday. I think he might take out my feeding tube. I have a long list of questions for him. I'd read a bit about lymphadema. Basically, since Dr. Rothman removed 27 lymph nodes from my neck, the lymphatic fluid that they usually carry away can build up and cause problems. Most of the stuff I've read pertains to breast cancer patients and I need to find out how it affects head and neck cancer patients. Breast cancer patients tend to have 2 or 3 nodes removed. Common problems are swelling in the arm on the side operated on, which is painful and is treated with tightly wrapped bandages that must be worn for weeks. From what I've read, it's not pleasant at all. I doubt this treatment can be adapted to my issues. Can't wrap my neck in tight bandages.

One of the therapies used to treat lymphadema is gentle, specific massage. The fingertips are lightly pressed to the area and moved very slightly down and towards the torso. The other thing I'd read concerned flying after node-related surgery. I'd only seen a couple of things related to this and need to ask if it's true.

I also have to ask when the PET scan will be and how long till the results are back. My dad wants to fly out for it if the time between the scan and the results isn't too long. The last thing I need to ask concerns my lack of saliva. The radiation and chemo pretty much killed those glands. They'll come back, but haven't so far. There's a product that's called Biotene, I think, a spray that acts like synthetic saliva. Part of the problem I have eating certain foods is this lack of saliva. Too dry and I can't swallow. Meats are the biggest issues in this regard.

Anyway, time for my second breakfast!

Sunday, September 18, 2011

Over The Hump

The last couple of days have seen a lot of improvements. The fatigue is slowly going away, but the big thing for me is that I can taste certain things again. Tangy stuff most of all, like tomato sauces were first. That and Diet Coke, which I believe prompted the return of flavor when I shocked the hell out of my tongue the first time I tried it. Since then more areas of my tongue seem to be waking up. Since that happened I've been trying to force myself to eat regular food to wean myself off the feeding tube.

I had some cereal. Cocoa Krispies, to be specific. I couldn't really taste the cereal and the texture was a bit much, but I was able to finish two bowls. Ice cream with a brownie, almost a whole sloppy joe, some noodle soups, even a little prime rib that Kevin brought home last night. Mostly it was the A-1 that I was tasting, but still, it was so great to be able to taste even just that!

Now I have no excuse to slack off anymore, I guess. Back to work.

Sunday, September 11, 2011

It Hurts and Stings

I was able to eat some spaghetti last night. Sorta. I ate some sauce and some noodles. A mushroom or two. The tomato sauce burned a little, but it was the Diet Coke that really did it. Harsh. It made my tongue do odd things. Everything tastes metallic or alkaline on one part of my tongue. Even water. I think that's why I was able to eat spaghetti. The acidy taste mimicked the real taste of tomato sauce's acid taste and fooled my brain into thinking it was tasting something. So I could finish eating rather than losing my appetite after a few bites of no flavor.

Wednesday, September 07, 2011

Curse You, Anthony Bourdain

I've been craving real food so badly the last few weeks. I sit and watch Food Network and Travel Channel shows to torture myself. Anthony Bourdain's Cajun episode replayed and I had to watch it. Actually, they serve a good purpose, I guess. They make me so hungry, I can force myself to pour another can down my tube and hopefully gain back some weight. My pre-surgery weight was around 180, which was down from my average 185 to begin with. Right now I'm at 157. Almost 30 lbs lost over the last four months.

But the craving... I've tried scrambled eggs, soup, mashed potatoes, and for the most part, I can swallow it without too much trouble. It hurts and doesn't go down perfectly but it's doable. Last night I made chocolate pudding in the hopes that chocolate, being the last thing I could really taste, might be the first taste to come back. Nope. And the complete lack of taste makes eating it so much more difficult than the physical pain and discomfort. It makes me a little queasy, eating something with no flavor, like I'm doing it wrong or something. I really feel that if they could develop a pill that kills people's sense of taste, they could market it as a diet drug. 5 bites and I'm done.

On the other hand, I opened a Diet Coke and tried to drink it. I was surprised by the fact that I could kinda taste it, but more surprised at how much it burned the inside of my mouth. Like acid tearing through my skin. Oh wait, it is acid... I still managed to drink about a quarter of the can and the burning lessened with each try.

I'm finally feeling less fatigued. Hopefully I can get stuff done today. Like shipping the paintings people were kind enough to buy from my Etsy shop. Up until this week it's been difficult to do much more than sit and click a mouse. Even typing is tiring. But, my mouth is almost healed, the dead skin has finally started peeling off my neck and I was able to sleep through most of the night without waking to clear my throat. Slowly but surely.

Monday, September 05, 2011

Slowly But Surely

I think I'm finally turning a corner. The burns in my mouth are starting to heal finally and I don't feel as tired as I had been. The burns on my neck are much better. I haven't really been out since my parents left, except to go to my doctor's appointment. Had no energy to do much and driving is tough because of the muscle issues in my neck and shoulder.

I tried to eat a few times. Tonight I tried a scrambled egg. I got most of it down before the lack of flavor made it nasty. It's amazing how hard it is to eat when nothing has flavor. If they could make a pill to do this temporarily, they could market it as the ultimate diet pill. I still crave something real, like a hamburger or something. Kevin bought chocolate popsicles but they taste like unflavored ice. Maybe chocolate will be the first taste to come back, it was the last to leave.