You know what a shell is, right? I seem to remember getting my first good look at a shell when I spent a summer on my Grandfather's farm in southern Missouri back in 1960. (I also remember the Beatles hit the world that summer as well. That was all we heard on the radio!)
My Grandfather had an 80 acre farm where he raised milk cows and chickens. The cows were a pain, the needed to be milked at 4AM and at 4PM, and my Grandfather tried his best to get me up for the morning milking, but that never worked. Instead, I would get up after he was done, and ride with him in his pickup to town where he delivered the milk.
Then we would return home, and check the chickens.
Grandpa would gather the eggs each morning, and some were reserved for raising more chickens, others went to market. I never figured out how he decided this. I think it had something to do with roosters.
In any case, the breeding eggs were treated specially. They sat in warm areas of the barn until the magic moment.
I saw the egg start to move all by itself. That was the moment when you knew something was alive inside. After a day or so, a hole would appear in the shell, and you got a look at a tiny beak that eventually worked the hole into something pretty big. As that happened, you started to see the fluffy chick inside. Then, boom, the chick was out, alive and running around, ready for its shot at life. It was pretty cool to see way back then.
So what does this have to do with anything?
Living a Normal Life
Hooman Beans do not have shells. Instead, we are born in this soft body and we pretty much live our lives ignoring that body. Until it makes itself known to us in some way.
Maybe you stub your toe, or get stung by a bee. Maybe you catch cold, and suddenly your body seems like a different thing entirely. Instead of worrying about stuff in the outside world, you worry about your body. Why does it not get better and let you go back to your normal life?
Sometimes that body gets damaged, and normal life is not going to happen ever again!
It occurred to me the other day that my shell, aka body, has been being modified by each round of cancer I battle. Each time, something has been removed, and I have to live with what is left. Outwardly, I do not look that different. At least if you ignore the obvious dent in the side of my face where a lot of bone has been removed. Inwardly, I feel pretty much the same.
Except for one thing.
The shell is ever present now. I feel like I am living inside a shell, and I cannot break out. This feeling really became obvious when I lost my left eye. Suddenly, the entire left side of my body seemed to be gone. It took a while before that feeling faded into the background.
Then I had this last round of surgery and lost my lower left jaw bone. That was followed by a mild stroke that affected the vision in my remaining eye. Suddenly the same feeling I had when I lost the eye was back, compounded by a kind of haze in my vision that does not go away. I can see well enough to get by, even to drive, but things are not normal.
My world seems to be closing in on me, and that ain't fun! As odd as it may seem, the more stuff they remove, the more obvious that shell seems. I guess I am missing those parts I lost. Weird! I have heard stories of amputees feeling things in the limbs they lost. Maybe that is what is going on.
Follow-Up Tests
Last week, I went back to M.D. Anderson for another CT scan and follow-up visits with my doctors. The CT scan was normal, just another simple ride through a donut, so I will not bore you with that event.
I did not see Dr. Yu, my plastic surgeon, but his PA looked me over and said everything looked good. The "flap" in my mouth is shrinking, and in another few months, they will decide if I need more surgery to tune it up. I hope they can do something. That flap is keeping my mouth open, making eating and drinking a mess!
My visit with Dr. Lai was more interesting.
Dr Lai
Dr. Lai did the major surgery to remove the cancer we spotted back when I had a biopsy of my gum done. I am not thrilled that the cancer found by that biopsy was not even seen in the CT scan I had the same visit, and I talked to Dr. Lai bout that.
"How come the doctors in Austin prefer PET scans to look for cancer, and M.D. Anderson uses CT scans?"
Dr Lai told me way back that PET scans produce too many false positive results. My comment was: "I almost prefer that to missing real positives all together!" That has happened twice to me now!
Dr. Lai said part of the problem is due to Insurance companies who will not approve the more expensive PET scans.
Great! A bunch of bean counting statistical geniuses deciding on medical procedures in their zeal to minimize costs. Not to you, to THEM!
Back when I first found out I had cancer, Dr Scholl had to fight with my insurance company to even approve the PET scan that confirmed the cancer. That was really annoying!
I old Dr. Lai the solution is simple. Get rid of the insurance companies, at least this pricing game part of them, charge what the care really costs, and stop letting those companies make medical decisions.
I told Dr. Lai that the bill we got for my last surgery was over $160,000. He asked how much I paid. Zero!. He said he did not get much of that!. I said "I am sorry, I guess your Massariti payment will be late this month". He knew I was joking, and he shot right back: "I drive an eight year old Hundai!" I told him I like that!
More Radiation
We went over my Pathology Report, basically a summary of what the surgery did to my "shell". Dr Lai feels that I have so much new tissue in the area where cancer has been popping up that maybe I can have more radiation to try to stop future events. He suggested I take my report to my radiologist and explore that.
So, we did just that. We called Dr Dziuk, who managed my twp radiation treatments, and scheduled a visit.
Dr. Dzuik
Dr. Dziuk was glad to see us, as was most of his staff. It has been over three years since we last visited with him. We went over the report, and he examined the recent surgical modifications. He said he would have to retrieve the data from my last treatments, and go over them to see what he could do.
We left him to his studies, and waited for the answer.
Visiting Friends
Last Sunday we went up north to visit the Goads. We met them through my Blog, and Howard has been going through much of the same treatments as I have with the same doctors! While we were visiting, I got a call fro Dr. Dziuk. He feels that he can treat me in the area around the last surgery. That is both good and bad.
Good, since radiation can kill cancer cells that are too small to see, and may flair up into a tumor in the future. Bad, in that your body ("shell?) can only take so much radiation, and I have had a bunch!
So, I can be treated in the area around where this last surgery happened. But is that wise?
Dr Scholl
I called Dr. Scholl for his opinion. He was not so happy with the prospect of more radiation, especially since we do not know enough about things yet. He did not look at any test results, but he was of the opinion that we should not waste this treatment option until we know it was really needed.
So I am left in a quandary! Should I or should I not!
More Consulting
In the end, I decided to get another opinion from a radiologist at M.D. Anderson. I called them to start this process, and we are waiting to hear back on that.
Back to Work
This part is a bit silly.
I have been on Family Medical Leave Act (FMLA) leave since the surgery, which is now nine weeks. FMLA protects your job while you are recovering from medical ills, but you burn any leave you have, them potentially go on unpaid leave if needed. I had about six weeks of leave built up, and the school has a plan where folks can donate unused leave to others who might need it, and I qualified for that plan. But Dr. Lai felt I was well enough to go back to work, so he signed a form letting me do just that.
Spring Break is underway now, and school starts back up on Monday. I am cleared to work. But what does a teacher do when he returns to work smack in the middle of a term. My originally scheduled classes are already underway with other teachers. Asking me to take over is going to be pretty disruptive to the students.
At least, that was my thinking. I was not prepared to be told that the plan was for me to take over as though nothing happened. Yikes.
My boss and I decided that maybe I should ask for part time work, rather than full time. Actually, that is a good idea, since my original teaching load would have required that I stand up in class about 6-8 hours straight twice a week. My legs and the rest of me (in this "shell") are not really ready for that. I still get pretty tired when I do my walks.
So, we asked Dr. Lai to modify his release to return to work, and we are going to try part time work. I will be taking over two distance learning classes which are run on the Internet. No classroom time needed.
And we wait to see if I will be doing radiation
Living in the Shell
In the meantime, I am living in this shell, and hoping the feeling fades. I am still hoping that my vision will improve, but after another several weeks, I am not seeing much improvement. I am not seeing any degrading either, so this is good. I am driving, carefully, and am able to do my work. Reading is hard since I have to look to the left on purpose to see what is there, My peripheral vision on that side is damaged. I really need to pay attention so things, or people, do not sneak up on me on that side.
I discovered the other day that going to the movies is no fun either. That screen is so big, I constantly have to sweep my eye left to right to see the whole thing. I did not expect that. When I got home, I noticed I do the same thing when working on my laptop. Watching TV is fine, since most of the screen is in my field of vision and I can see it fine.
More Prayers, Please!
This battle is not over! We are still fighting our way through the challenges. I may be living in a shell, but I am living. That really is what counts. And, both Cheryl and I are still feeling the support from all those who pray for us. Thanks again for that!
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