Hungry Hungry Hippocrates

I am forced to concur.
This is not my design, btw, I just Googled it.
It is for sale though.

I had three doctor's appointments scheduled today. One, with my otolaryngology oncological surgeon, another with my general practitioner, and finally the weekly physical therapist visit.

Except the physical therapist wasn't today. I forgot we're skipping a week now.

My family doctor was talkative. A lot. Said he wasn't confident he could get a speech therapist for me. It wasn't that he didn't think I would benefit from one, it was that he didn't think it would get approved. I talked to him a little about the problems I'm having with Ironwood and United. He knew a good bit about it. Then he went on to explain how a certain healthcare organization out here was bent on becoming the Kaiser Permanente of the Southwest and they were pitting health service groups - like Ironwood - against each other and pretty much using the insurance company as muscle. One of my Ironwood oncologists had suggested that I try to get Access to switch me to Mercy Care. I wasn't about to call them. I'm not even going to give them a reason to look my way, for fear they'll do something random.

My surgeon is the opposite, bizzaro version of my family doctor. He says almost nothing, and when he does, it's not clear what he means because his face is a blank. I can't tell if he's passive or pissed or asleep. He asks how you are and then just listens. No follow-up questions, really, he just moves on to the next thing. Looked in my mouth and the back of my throat and said everything looks good. Felt the nodes and such and said everything looked good. We talked about the upcoming PETscan and he said 2 months is too soon after the last one. He added, if he were an insurance company, he'd deny it. I'm not sure how to take that part. I can think of a few reasons, but only one that's bad for me. I don't want any more rads than I need, but I also don't want to skip a scan because it's beaucoup cash. In the end, I understand that I'm on welfare, so I'm not likely to be getting the best of care. Doesn't mean I gotta be happy with that, though I have to say, even though I have a lot of minor, daily complaints, I can't complain about the overall care I've gotten.

Side note: A few years ago it was pointed out that the true symbol
of Hippocrates and physicians was not the Caduceus but the Asclepius, which is
basically just a stick with a bent tip, not a bad-ass sceptre of winged power.
The world said no.

I don't have to see him again until April. I also found out that my surgeon doesn't take Mercy Care.

The Rumour of the Earth is Dim and Confused

"is that....cheering?"

Well, now I don't know what the hell to think.

I've just gotten back from my appointment with Dr. Szewczyck and I'm more confused than ever before. When I explained why I was seeing her 2 months earlier than I should be, she informed me that yes, they were still in negotiations and no, she doesn't know how it will play out, but she hopes it will be fine, but she isn't sure.

Basically what United Healthcare is doing, according to my doctor, is altering their contract to now require patients under 70 to pay 40% of the cost of their healthcare. I don't know anyone who can afford 40% of the $50,000 that a PET scan costs. Or 40% of a course of chemo or radiation. Patients over 70, you know, retirees on fixed income, will have to pay 20% of their healthcare costs. She said that what they want is to not only have Ironwood prescribe cheaper drugs, but also give less care. Of course that's not a realistic option.

So yeah, more reason to believe our healthcare system is screwed beyond repair. If insurance companies can't raise premiums they'll just cut services and prove yet again that healthcare is only for the wealthy.

The other issue for Ironwood, of course, is how can they just stop treating someone in the middle of chemotherapy or radiation treatments? So they're focus in negotiations is to keep at least these people under their care and get accommodations from UC over that. Being done with my treatments, I will not fall into this category.

Then I mentioned that I was under United Healthcare through Access and she got all optimistic and said that might change everything since it's welfare and not technically real insurance. She ran off to ask someone about it but came back without an answer. Apparently the person she talked to is swamped with calls about the very same issue.

Anyway, the gist of the meeting was that I'm "85% cured" and just need to keep following up. My bloodwork all looked good. We re-set my appt for the 3rd of Jan and hopefully we'll still be able to keep that date.

Not actual tire.
Or nail.

I was late for my appt. I walked out to a flat tire. I've had a slow leak for a few days but this is the first time it's gone flat. I used Kevin's compressor and filled it and rushed to Ironwood. On the way home I stopped at Walmart to get it patched.

Under what circumstances would it go from a simple patch to having to purchase a whole new tire? Yup, no patch. The nail or whatever is in the sidewall and therefore they can't patch it. I don't have $20 to my name, much less $80 so I told them to put the damn tire back on my car and drove home. Awesome.

The Building Blocks of Life

I've seen Jurassic Park at least 50 times and I never noticed the bloodsucking lawyer is wearing shorts. A suit with shorts.

I had re-scheduled my Dr appt for before the cutoff date United Healthcare gave me. Every appt with Dr Szewczyck is to be preceded by a blood draw, so I took the order and had blood drawn today. I had Syed again. That man is the best Phlebotomist I've ever been to. That's someone who gets paid to draw blood. The first time I went to him it was like he did some sleight of hand and the needle went in like air over a marshmallow. Today was less than smooth but still cake.

The lab's office is across the street from Ironwood so I figured I'd go over there in person and change my appt with Dr Woo as well since I hadn't been able to over the phone. I explain to the guy behind the desk and he says he doesn't understand why people have gotten those notices, they're still taking United Healthcare and are still negotiating and expect to close the deal successfully. Who knows what the hell is going on...

"Consider God's handiwork; who can straighten what He hath made crooked?" - Ecclesiastes 7:13

 It's that time again kids! Time to enumerate the things that are still screwed up following my bout with the cancer. Let's see how many we can count!

First, and probably most distressing, I no longer have the ability to sing.

I'll let that sink in for a bit. Pay no attention to that cheering, it's probably some Tea Baggers responding to Arizona's new "No Insurance, Go Die" policy.

 

Yeah, the voice is gone. After that, the lack of saliva glands and the accompanying inability to swallow seem a small thing, I know, but I assure you that swallowing your food is essential to actual eating. Otherwise you're just chewing and spitting. I keep thinking of Johnny Dangerously. "Gee, it'll be good to see ma spit again." I wish I could get that operation. It'd be nice not to wake up in the middle of the night with my lips stuck to my teeth.

Then there's the ball of whatever that's permanently stuck in the back of my throat. Hack and cough and I might dislodge it for a moment, but it's back in a couple of minutes, like a mucus-y little gremlin waiting for me to eat so he can horde more stuff about him. I have come to the conclusion that it won't be cancer that gets me, it'll be "complications from pneumonia" in my old age when I become unable to deal with this shit any longer. Any liquid or solid tends to get shoved upward back there, only to come back after each attempt to fully swallow it. Sometimes it doesn't go down where it's supposed to and ends up in my windpipe. I can't imagine being able to deal with that forever.

Less annoying but still problematic is the Frankenstein mess that is my neck. I've grumbled about this before, the fact that all of my neck problems come from the attempt to make me look more "normal". The skin graft in my mouth I get, since I was missing a good portion of the back of my throat, but the neck thing, no. I'd rather have a working chest muscle without the screwed up yanking of my jaw whenever I move my arm. I'd rather have a bit of a hollow chunk in my neck than this messed up junk I need physical therapy for. It has almost nothing to do with my actual cancer and it's frustrating. The scars mean almost nothing to me and the fact that I'm suffering more than necessary due to what was a cosmetic procedure just seems backwards. My poor neck tendons on the right side look like the cables holding up a suspension bridge.

On the plus side, I can now grow a nice and full mustache for the first time in my life. Too bad it looks like Matt Damon's in The Informant. Chin whiskers are another story. Kinda like my Three Stooges hairline. I had to do the Marine cut to make up for the fact that the back of my head looks like Moe's, or Forrest Gump's.

The other good news is that I feel pretty good. No more fatigue, at least not lately, and all my scars are healing well.

The Road Goes Ever

Goes. Doesn't look like a real word there.

Busy day, after two false starts. I post-poned the first physical therapy session so I wouldn't have to struggle to make it to a Lord of the Rings trivia thing later at Bookman's with a friend from The Plaza, Ista/Andrea. I was late and blew it utterly anyway. I knew all the answers for the ones I was there for, dammit. Even Caras Galladhon! She won anyway, and they gave everyone 2 tickets regardless, so she gave me her second, which was very sweet, considering.

The second appointment was a mix-up. They'd called me to re-schedule, because my therapist called in sick. I wrote down Tuesday, but apparently it was to be Wednesday. So, Wednesday it is and back I went.

My therapist, Janice, is an older woman, which is probably a good thing as I won't be distracted by a hot young chick groping me. She was very nice. Patient and slow and made me feel like she knew what my issues were, like she'd had experience with this particular surgery's issues.

Let's enumerate those while we're here. In order to fill in the void left in my neck when they removed 27 lymph nodes and I'm sure plenty of adjacent tissue, as least near the two nodes that were cancerous, my surgeon took a good section of pectoral muscle and detached it from my sternum on the one side and shuffled it under my skin, blood supply and nerves intact, pivoting it up into my neck area and reattaching the loose end to my jaw. I have a chest muscle in my neck, and it's always tight, like it's in a constant state of flex. The added feature is that, since it's still attached to my shoulder, when I move my arm or try to do anything that used to involve a chest muscle, my neck flexes and it has a tendency to pull down on my jaw.

The whole thing feels like an experiment that hasn't been proven effective yet and they're still working on it, but the procedure has a name and everything. Radical Neck Dissection with Cervicopectoral Flap Reconstruction. The neck dissection has been around since at lest 1906. Not sure how long they've been doing the reconstruction part.

So, I have a big chest muscle swung around and in my neck, laying on top of my collarbone and attached to my jaw. Flexing pulls my jaw down, but the whole thing is also tightening up a bit and pulling my chin down all the time, making my posture worse than it already was. This combined with the lack of real neck muscles and the tendons all around the area are overcompensating for the lack and everything is tighter than Dick's hatband. My neck feels like it's got a foot of steel cable running down it.

These issues and the other throat problems I have still from the radiation and chemo: muscles that hadn't been used for over a month, atrophied and burned with radiation. Means I have to learn how to swallow for the third time. At least everything I drink doesn't come out my nose like the first time.

Anyway, Janice ask me a lot of questions, listened well to my answers and offered some good suggestions. She checked my range of motion, mostly regarding my neck, but a little around the shoulder. I mentioned a problem with my tracheotomy scar, which seems to have gotten tighter. She massaged it, gently at first, then rather vigorously, but it does seem a lot better. She then began to press upon my tendons and certain muscles to both get an idea of what's going on, and to stretch them and get some more range of motion out of them.

Pretty standard physical therapy I suppose. While lying on the table, another patient came in, and though I couldn't see, he had apparently had his foot torn or cut off and reattached. Good times. Janice arranged my appt schedule. I'm approved for 15 sessions and they set me up for 10 already. About twice a week.

And then I was on the road, heading north to meet up with Andrea and her friend, Dave. We went to Armadillo Grill in Scottsdale. Appetizers were half price. There wasn't much I could choose from with my no-saliva issues, so I got fried pickles. I was expecting pickle chips, not kosher spears. They were good, but difficult to eat since I can't open my jaw very wide anymore (Janice is going to work on that too). That and the acid in the pickles messed with my tongue and cheek. Nerve damage from surgery and all. Figured I needed some more food in me for the long evening so I got the bread pudding for dessert. Not bad. Mine's better. Still pretty hard to eat.



The concert was at Jobing.com Arena (I hate typing that - Jobing is a horrible construction of a non-word and naming an arena after it, with the dot com part, is ridiculous). Starting at 7:30, the orchestra and choirs came out right on time. I had been wondering what the concert's format would be like. The Fellowship of the Ring played on a giant screen behind the orchestra, complete with subtitles (since the symphony was louder than the film in places), while the orchestra played the score exactly as it is played out on-screen, right down to the voice-work. There was a female performer singing the lead parts as well as the song "May It Be" for the end credits, and a young boy from the boy's choir singing during the credits as well.  Pretty cool evening.

Portal

I no longer have one going through my abdomen.

It's amazing how much better I feel, emotionally, now that the feeding tube has been taken out. It's obvious why. It's the last hurdle to healthy, the last bit of pharma invading my body. That damn tube I'm grateful I had in me was definitely wearing out it's welcome and now it's finally gone. It also means I'm able to eat real food.

The real truth is that I've always been paranoid about the tube. From day one I was trying my hardest to protect it from getting snagged or yanked. Once I had to take care of it myself, I taped it to my stomach and rigged another piece of tape to hold the tube close to it can't get pulled. I had to wear buttoned shirts so I can always have easy access to it, especially when the damn thing leaked or the syringe port came out.

Not Actual Size

So, being the paranoid guy I am, I was a bit concerned about how it would come out. How it would be, coming out. I knew the mechanics of it; screw a syringe (needle-less) to the smaller port and draw out the water in the balloon keeping it from coming out of the hole in my stomach. Once the water is removed, the tube is pulled out. Mechanics are one thing. Reality is another. I'm already freaked out that I still have two holes in me and a piece of medical equipment hanging out of them, so the idea that the Dr is going to pull this thing out of me is a bit unnerving. And knowing how this Dr works, I was kinda jittery about the whole procedure.

So I did what I do: I scrolled the internet for information. There weren't too many pictures of my particular PEG tube (percutaneous endoscopic gastrostomy), but I found a couple that made me feel better. Once the water was removed, the tube should be fairly smooth, with no ridges or changes in diameter. I think part of my paranoia in this area comes from my experience with the drainage tubes after surgery. I was imagining the same thing happening, but in my stomach as well as my abdomen. I scrounged for info for too long, stumbling across too many pictures of what happens when things go wrong. I felt better for knowing it wasn't nearly going to be as bad as my mind was making it.

Dad drives me to the doctor's. Knows the way by heart now. I'm letting him drive because the shifting bothers my shoulder a bit and I'm taking advantage of a driver while he's here. At the office, I give the receptionist the PET scan disk and the report and eventually get called in. He's happy with the results and asks what Dr. Szewczyk said about the two slightly lit nodes. I said she felt they were not a concern and he agreed but said they were something to watch. He checked my mouth and my scars and then asked if I was ready to get the tube out.

He takes the syringe and screws it into the port. He draws out the plunger. Nothing. He screws it in better. Nothing. He tosses the syringe and gets the scissors. No water comes out after he cuts it open. By this point I'm thinking, "Shit. That's 0 for 2. I know where this is going". So he hands me the horseshoe shaped bowl to catch whatever might possibly come out. My dad thought he was trying to distract me, but later said he doesn't think that anymore. So I'm looking down at the bowl he's handing me and it's almost like a sleight of hand thing because he's handing it to me with one hand, grabbing the tube with the other and then, before I can even turn my eyes to see what's going on, he's pulled it completely out, with exactly the gut-pulling, stomach skin-hole stretching sensation I was dreading.

It wasn't that bad. Just shuddery and cringy. Yeah, two totally made up words. In the big scheme of things, it was somewhere between getting an IV and yanking off my bandages too fast. Nowhere close to how the drain tubes felt.

My dad took me and Kevin's kid to The Keg, a nice steak place (sorry Livvy), for a celebratory dinner. It was pretty good. The server asked if we were celebrating anything in particular and my dad told him we were and explained about the clear scan and the returning taste buds and such. I told him that I had just had the feeding tube removed, and was celebrating that with food. He was very nice and congratulated me pretty sincerely. Said he had relatives who had passed because of cancer. A few minutes later the manager came over with a hefty slice of coffee ice cream pie. He congratulated me too and left us with the pie. My dad had some, but I ate the hell out of that pie. I swear I could taste the chocolate cookie crust.

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

"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!

Can't Stand Up For Falling Down

Saw Dr. Szewczyk today. She said my blood work looked great. Looked in my mouth and complimented me on how clean it was compared to many of her patients. Brushing is rough but there's no way I'm going to let my teeth go bad too. She didn't really have anything more to offer for the mouth issues except try Claritin instead of Zyrtec. Gave me an antibiotic prescription for a possible sinus infection.

The bad news is that Dr. Woo was a little optimistic. I guess he's just thinking radiation, but whatever. According to Dr. Scewczyk I have about another month before I start to really recover. Right about the time I'm due for my PET scan in the beginning of October. So...no real sleep for another month...