Home Again!
The cat has forgiven us for abandoning him to cat-sitters for 10 days!
I can lay in my own Sleep-Number adjustable bed!
Well, that last one is nice, but it is sure not as adjustable as the one in the hospital!
All I have to do now, is heal, wait for my return visit to M.D. Anderson next week, and deal with pain!
Pain!
I do not focus on the pain part of this adventure much, but it is a constant part of it. The really nice thing about surgery (if there actually is a nice part) is that it happens in a hospital setting where they have really good drugs. Those drugs numb the pain, and let you focus on other things - like exactly what modifications happened as part of v5.0?
Those drugs are a two edged sword, though.
When I woke up from surgery, I discovered a button in my hand connected to a Morphine pump. That pump was set to meter out a specific dose of Morphine, which is probably the most powerful pain killer they gave me. The pump also tracked how much I had, and would not let me exceed a certain amount of that drug in any amount of time. I could not have more than one dose every six minutes initially.
You were taught to hit the button "when you really need it". If you were allowed a dose, a green light would turn on, and the pump would send Morphine into the ever-present IV you always end up with in the hospital. (I am getting used to those things, sorry to say!)
Why not give you more, any time you need it?
Addiction
Your body eventually gets used to having the drug circulating around, and you actually experience something just like the problem you are attacking. Addiction is a condition where you feel the need for the drug, even if the pain it treats is not there. You suddenly cannot tolerate the absence of the drug. That intolerance feels just like the pain you were initially fighting.
We all know where that problem can lead!
So doctor's work pretty hard to use a drug when you need it, then wean you off of that drug onto a less powerful one before the addiction part kicks in. I have been on a variety of pain drugs over the years as they search for some combination that will get me through the pain I experience.
I was off of Morphine a couple of days after surgery, and they switched me to a longer acting Hydrochodone pain killer. This one is a liquid and they just pump it into the feeding tube you also seem to get every time you are in the hospital. At least the one I have now is a small tube, but one big enough that I do not have to squirt Ensure into a tube running into my stomach like I did back on v2.0. A bag of fluid hanging from a pole next to where I am sitting (or laying) is enough pressure to gravity-feed you until you can swallow normally.
"Time for your gravity feeding" I would hear a nurse say. "What does gravity taste like?" was my standard reply. I actually went through a series of these silly jokes where I asked for cherry gravity, orange gravity, and tangerine gravity. The nurses played along! Twas a bit of fun, eh?
Hydrochodone is good stuff. It really works as a pain killer, but it is addictive! In another form, those of you who watch "House" on TV know this drug as Vicodin.
So I am now on Hydrochodone, sitting at home, remembering the experiences I had during v3.0 and v4.0.
Pain Control
Basically, these last three surgeries have been pretty brutal in terms of work they had to do. Remember that I am dealing with bone cancer, and part of the cure for that is removal of bone. I have not really asked much about how they actually did that work. Cheryl read part of the last surgical report to me (where the ended up removing an eye) and it sounded like something out of a science fiction novel. I elected not to inquire about that more, since the visual images they planted in my head were not very nice!
Dr. Scholl's explanation was much more succinct: "You will feel like you got hit by a bus!"
Removal of my lower jawbone this time is now settling in as pain in that side of my face. It is not all that bad, since I lost most of the nerves feeding that side of my face back on v2.0. Still, when I wake up after laying on my back all night (well at least until I have to use the portable bathroom) my face aches and I seem to need the drugs.
We are trying to space those times out so I do not get addicted to the Hydrochodone as I did earlier. Eventually I got past the pain part, but when I tried to back down on the Hydrochodone, I got really "anxious" (that is the only word I can come up with for the feeling.
So we consulted a pain specialist and went through a program to wean me off the drug.
It took a while, and was no fun. But it did work. Twice!
We hope to avoid that problem this time.
What Hurts Now?
Let's take inventory now. Head to Toe.
Feeding Tube
The feeding tube up my nose is pretty sensitive to people pulling on it. (Duh!) It is stitched in place, but more than once the tube has been snagged and it HURTS! The worst case was when a nurse was looking me over, got done, and started walking away only to discover that her pager had snagged the feeding tube. The tug on my face was pretty strong, enough that it ripped the pager off of her coat, as I laid there yelping! Fortunately, the stitches held, and I was not damaged by this event. It was an accident, but it made me hypersensitive to people working around that silly tube!
"Flap"
The took some skin from my left leg to build a "flap" to cover bone they used to build me a new jawbone. That "flap" was the focal point for the first few days after surgery, since the blood supply they hooked in there fed the new jawbone and flap as well. If that supply failed, the entire job would fail.
Initially, the nurses cam in every hour or so to make sure that Doppler sensor they installed still could detect blood flow. The sound was nice to hear, but not nice enough for dancing. Still, I would poke my fingers up in time to the "music" and everyone would chuckle.
The nurses and doctors had a contest to see who was better at finding the sound. A microphone had to be in just the right spot to detect it. Surprisingly, the nurses often won that contest.
The flap is very swollen, enough so that I cannot close that side of my mouth. I look like I just had a spoonful of mashed potatoes (the skin is white, since my leg was not very tanned), and forgot to swallow! That whole thing adds up to my new pumpkin face look. It should get better over time, and they may do another surgery to pull out excess tissue if needed (been there, done that). The doctor was very direct. If we put in too much, we can always take some out. If we put in too little, we have a very hard time adding in more!
Ever once in a while I get a twinge in that area, but it is pretty pain free most of the time.
Other Mouth Issues
Apparently, as they worked in my mouth, there was a bunch of work to do, and they sewed in several areas. There seems to be a good supply of tape, cloth, sutures, all working their way loose over time. Most of these pieces of stuff end up being pushed out of my mouth by my tongue. Chery and I stare at the pieces, and have no idea what they are or where they came from. Hopefully, that will stop happening in a few days!
Neck
This is a big one. Much of the work they did involved coming in through the neck. So, I have a drain tube and 35 more staples in that area that will go away next week, we hope. (Wait, I need Hydrochodone NOW to get ready for that!)
That area is what aches in the mornings, but after I get up and sit up more, that pain subsides.
Apparently, these doctors never took high-school biology. They call this kind of work "dissecting" I know what that is, I did it to a frog and did not enjoy that one bit. When they said they might need to dissect my neck, all kinds of nasty images went through my head. But Dr. Lai is a "Head and Neck" wizard (as is Dr. Scholl) , and he made sure he left the good parts alone and worked only on the bad parts.
Putting it all back together took some effort, and a bunch of staples. (I am dreading the removal of those!)
The drain tube in that area is also very sensitive, so I need to be careful about that tube. We also have to clean out the plastic catch bulb on the end of the tube. Not much is being caught by that bulb, another sign that it is not needed any more.
Upper Left Leg
As happened back during v2.0 (hey, these version numbers help put points in time into proper order!) they took a chunk of skin off of my left leg (so it matches the one they took from my right leg earlier) and used that skin to cover work they did on my lower left leg. The area were the skin came from is covered by a plastic shield bag and a layer of saline fluid to help it heal. I have to be careful not to rip that bag, or it gets very messy when the saline leaks away. So far, it aches a bit, but not bad.
Lower Left Leg
The biggest source of pain now, is actually getting better. They flat took fibula bone chunks from my lower left leg out, together with blood vessels and other tissue, and used that to construct the new jawbone. There are three new bine pieces in my jaw now, hopefully healing into one solid one over time.
I am not sure what was left in the leg. The doctors tell me it will heal, and new bone will grow back in to replace what they took out. That probably means they did not just remove a complete chunk of bone, but took slices off the bone off (how, is also something I may ask about later, not now!)
The bone they took is not "weight bearing", so walking (and even running) is probably not going to be affected. But the entire area hurts. The plastic boot they had me wear is designed to limit flexing of the muscles (and bones) in the area, but they want me to walk without the brace as much as I can. I only wear it at night now, just in case something silly happens when I am asleep.
So, my leg aches from all of that work.
Part of healing from that procedure is me walking around on the damaged leg. It hurts to put pressure on that leg, but the more I do that, the less it hurts, so:
"Damn the torpedoes, Full Speed Ahead!" to quote some Navy guy from way back when! Or, was it just John Wayne in an old movie?
Life Goes On
All I need to do now is sit and heal. I have my computer to keep me occupied (so I can write silly blog articles like this one), a wonderful care giver, without whom I would not be doing this well, and a ton of supporters "out there" in the cloud. Trust me, we both know you are there, and treasure your support.
This blog continues to amaze me. One of the nurses at M.D. Anderson, whose antics have been immortalized in these articles, told me she is sending a link to them to her mother, who is also fighting cancer. She has had several "flaps" installed, but hers have not gone as well as mine. She thought hearing about my adventures would help her mom through her adventure. That kind of thing has happened a lot, and we occasionally hear back from folks who read this stuff I write!
Quite frankly, when I started writing about my cancer ordeal, I had no idea if anyone would read it. It was supposed to help me reach all those who emailed support to Cheryl and I. I thought that if only one person read this stuff, and it helped them get through their cancer adventure, I would be happy. I am well past that point now, as we have heard from many such people over the years. The blog seems to have a life of its own!
Dr. Yu, my master plastic surgeon, is hoping my adventure has "10 or 20 more years to go". Cheryl and I are hoping he is right!
God Bless all those who suffer, know He is with you through it all!
"Over and Out" (Pilot talk for I am done now!)
Comments
There are no comments yet.