Note
I really had no idea where Sheboygan was (Wisconsin) until I looked it up. I just remembered sitting in the Greyhound Bus Station in Washington, D.C., waiting for the bus to take me back to Virginia Tech, and hearing announcements like that. It just sounded cool!
Well, my doctor told me it was going to feel like I got hit by a bus, but he neglected to tell me that that bus was going to hit me, then sit on top of me for a while. Suffice it to say, I am still in the hospital recovering to a point where I can go home and recover more.
The surgery
Warning
Don't worry, I will keep this readable, even if you are squeamish about such things! If you are worried, skip this section. I write this to help those who might have to experience it themselves, or help a loved one get through the process.
I checked in on April 16 at 5:45am and was immediately taken back into pre-op to get ready for the adventure. That process involves filling out a bunch of forms, a few needles (yuck!), and sitting around thinking about that is coming. I have said this before, and I will say it again. If you have faith in your care team, which is made up of your family, friends, doctors, and anyone else who cares about you (I do), and God (I do), then the sitting around part was not so bad. I have been here before, and survived just fine.
About 6:15, they rolled me down the hall into the operating room (why is everyone but me wearing a mask?) and getting me ready. I remember my doctor walking up and talking to me, and I remember him saying he was going to start the tracheotomy, which I needed since they were going to be doing a bunch of work in my mouth, and I had a limited ability to open it due to the radiation treatments I had five years ago. Before the surgery, my doctor told me that most folks do not remember any of this. (Sorry, Doc! I remember it all!) He got that started, and...
Boom
The bus rolled into the room, I was out like a light, and remember nothing until I find myself waking up in a recovery area with a gazillion tubes and wires poking out of me! It was 11 hours later! Yikes!
Step one: get rid of the bad stuff
My primary surgeon spent about 6 hours of that seeking out the cancer and removing it as best he could. He did all that under a microscope, and the process is tedious. He removed the obvious cancerous tissue, and as he got closer to the edge, he was hunting down feather-like structures, cutting them out, freezing them and sending them to the lab for testing. When he had the total area around the tumor removed, and the tests are coming back negative for cancer, he declared the process over. There may still be cancer cells around, but we will blow them away with the radiation treatment that will come in a month or two, when I am strong enough.
Step two: Make it look better
Following all that, my plastic surgeon took over and proceeded to fill in the areas damaged by the initial process. I lost a few more teeth, a bit more skin and bone in my cheek and upper jawbone, and have a bigger hole in the roof of my mouth, now. So he "borrowed" some skin, fat tissue, and supporting blood supply parts and moves them into the affected areas. Wow, just like renovating a house! (Hey, wait a minute! Is he going to put things back later? I hope not!)
Butt-face
I have to tell you, my grandson is not happy. He was hoping that the doctor would take skin from a particular area of my body for this process and move it to my face so he could call me "butt-face". Sorry, Colin, it came from my upper thigh. (He is five. We all had a good laugh over this turn of events!)
Becoming a Cyborg
The interesting part of the plastic surgery process is the instrumentation they do to make sure the grafted tissue survives in the new location. Obviously, good blood supply is required, so they attached a blood flow and oxygen level monitoring system that closely watches the graft If anythings goes bad, they can jump in and redo things, hopefully without needing any new tissue.
I ended up with a bunch of wires coming from the new skin around my cheek, and some cool LED lights that lit up as the monitoring system did its thing. At night, I looked a bit like a cyborg! Cool!
On to recovery
After waking up from all this, they moved me to Intensive-Care. I needed to be monitored on several levels to make sure things were working properly. Initially, I was in no shape to move much, but was in little pain, and everything seemed to work, at least reasonably well. There is some nerve damage, and a ton of swelling in the area of the skin grafts, but all that was pretty manageable.
Angels
Know any nurses? Well, I have to tell you, they are angels, without doubt. When you can do little to care for yourself, they come charging in to help you in ways you cannot imagine until you experience them. The nurses I had in the ICU were outstanding, enough so that we nominated several for in-house awards. The attention they gave me to take care of my pain level, to keep me clean and comfortable as I lay there pretty much unable to move anything, was just amazing. Their job is tough, and worthy of more respect than they get. They do this work with not a seconds hesitation. (Sounds like another group of "output" people to me!)
I stayed in the ICU for almost a full week. I learned how not to eat (everything went in through a tube). I learned how to go to the bathroom without getting out of bed (and without getting the sheets wet) but I will not go into that! Suffice it to say that you just have to give up on modesty when you are in this kind of situation!
I was pretty happy that the pain level was not so bad. I had major work done on the side of my face, the inside of my mouth and on my leg, and none of those areas had major pain. The worst part of the entire situation was the swelling on my face. (My grandson and I settled on "chipmunk-face" as a suitable alternative to his first choice).
Keeping Quiet
Anyone who knows me knows I like to talk. Heck, that is part of why I love teaching! I get to tell stories to a room full of students who are supposed to listen, and even take notes! Cool!
However, as a result of the tracheotomy, I was unable to speak, so I had to write. Initially, this was hard, just because I was so weak and wired-up with tubes and instrumentation wires that I could hardly move, but I managed to scribble notes to the nurses and my wife. My sense of humor was unleashed and was an instant hit with the nurses! They actually enjoyed the interactions we had, enough so that several told me I was their favorite patient. Perhaps they told all their patients that, to keep their spirits up, but I am going to believe it anyway! And, yes, it does make you feel good!
Intermediate Care
After everyone was sure there were not going to be any issues with skin grafts or anything else, they moved me to Intermediate care. In this unit, they still monitor all the wires and keep close track of you, but not at the intense level of the ICU. The nurses here were equally nice, all very caring and good at keeping you comfortable.
While I was here, they pulled enough tubes out that I could start to get unhooked from equipment enough to get out of bed. First stop, the "throne" in the room, which was a huge improvement over the plastic gadgets they were using in the ICU. My leg was pretty weak where they "borrowed" things, but I had no real pain when I moved around. Getting up and sitting down required help, but once again, the angels were there to help!
After a few days, we decided to take a walk. I had to use a walker to steady myself on the first try, but did manage to get out of the room, walk down the hall a few rooms worth, and get back without any problems, so every one was pretty happy!
Next day, we tried the walk again, and I got the swing of things well enough to ditch the walker after a few feet, and took off on a stroll the length of the hall (600 feet) and back. Most of the staff in the hall had amazed looks on their faces, knowing what I had been through. The physical therapist who was with me fired me on the spot declaring that I did not need their services. Pretty good progress for two tries!
The next day, my wife and I did the same stroll together and we were feeing pretty good about the progress.
Out with the Trache!
Well, at least out with the speech-killing version. One week after my initial surgery, my doctor decided to downsize the trache tube (the one that goes from a hole in your throat to your lungs) with a smaller one that would let me breath better and speak! Only problem, another surgery!
I went through a very similar pre-op process, only this time with fewer forms. They wheeled me into the operating room and slid me onto the table, then the lights went out!
As I was wondering what had happened, I realized it was over. Elapsed time? Eight minutes! Wow! I did not really try to speak then, but after getting over the sedation drugs and they took me back to my room, I was able to talk if I made sure I did so while exhaling. It was not a strong voice, but it was clearer because of the new tissue they had put in my mouth. My voice before all this was a bit weird because of the way the roof of my mouth was reformed after my first cancer surgery. It did not help that I had a "defect" which let air (and spaghetti) move from my mouth to my nose. Ever smelled spaghetti? Don't try it, it was not fun!
My doctor stopped by later that evening and taught me how to cover the opening to the trache tube which made all the air move over my vocal chords and my speech was much more normal
Now, I could do a much better job of joking with the nurses! Hey, you have to have fun everywhere you are!
On to the "floor"
Nine days after surgery, I was moved to the "Floor", which conjured up all kinds of prison images until I found out it was just where the normal rooms are. Now, I am in a very small (and expensive) room with minimal monitoring, but this is the last step before escaping from the hospital.
The swallow test
The big step, now, is to make sure I can swallow well enough to go home and eat. That turns out to be harder than you might expect. I flunked the first test because my swallow parts were not strong enough to properly protect my lungs from whatever you try to swallow. You do not even think about this, normally.
My swollen face, some nerve damage, and being on the trache for so long all are working against me. After two days of exercises to improve things, I did improve, but not well enough to escape this place.
What is next?
I have to pass Swallowing 101 before they will pull out the trache and all the other tubing and send me home. It looks like I will be here for a few more days, enjoying basic cable (yucky, yuck!) and working on my swallow techniques. With any luck, then I will go home and let my face and leg heal. As that happens, the swelling in the new tissue around my cheek will go down and I will get to see what it will look like after everything is done. I have not looked at my new face yet, preferring to wait a bit, but everyone is telling me it looks good (they lie - that is where "Chipmunk-face came from). The plastic surgeon says I will have a two-tone face since my leg has not tanned to the same level as my face, but exercise and a little Mary Kay will fix that. What did I say? I might have to use make-up. Yee Gadzooks! Oh, yeah. I doubt that I will need to shave on that part of my face either.
With all my heart!
I want to thank all those who have tracked my adventure, and been in touch with my wife through this ordeal. I have been getting a summary of all the emails, tweets, and phone calls, as I have not been up to emailing. I am obviously able to get to my computer to write, but this has taken quite a long time to get written, so I will not be doing this again probably until I get home.
I am very grateful for all your support, so is Cheryl. We will properly thank all of you as soon as we can. In the meantime, may you never face the demon that is cancer. But if you do, I hope my missives help you get through them.
Roie and Cheryl
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