I had a CT scan yesterday, followed by consultations with the two lead surgeons. The purpose of the scan was to develop a 3-D model that will be used to shape the harvested fibula bone into the correct shape for grafting into my jaw. If you want to know more about the procedure you can go to:
http://www2.mdanderson.org/depts/oncolog/articles/11/2-feb/2-11-1.html
While I was having a perfectly awful grilled cheese sandwich and cup of soup between the scan and the first consultation, I looked around and realized that Terry and I were about to re-enter the same vortex of hospital stays and doctors visits that sucked up all of 2009 and much of the next 2 years--this was just the start of it again. That realization re-created many of the images and feelings I had back then, which I thought were gone forever. Well, guess what? The vortex is about to suck us up again, and we need to get ready for it.
The first consultation was with Dr. Roser, who is the lead maxofacillary (sp, who cares?) surgeon that I've been seeing for the last 3 years. He and his residents answered a lot of questions we had about details of the procedure and the recovery phase. He dropped a bombshell on us that there is a sign that the ORN is starting on the right side, but at this time there is no way to know if it will continue to develop. But, if you remember my history in all of this, the prevailing pattern is based on SFL, so that seed was not a welcome bit of news.
The details of the procedure are gory, so I will spare you those. The bottom line is that I'll be in ICU in an induced coma for 2-3 days with a trach tube to help me breathe, followed by another 6-7 days in a regular hospital ward. The key to it all is the first 48 hours, to see if the skin and bone grafts will take. If they don't, then it's back to the OR for another try with tissue from my other leg. One interesting bit of irony is that if the skin graft takes, I will have leg skin inside of my mouth that will start to grow hair there--actually a good sign. Right now I can't grow hair on the outside of my left jaw, due to the radiation five years ago. I'm trying to figure out how I'll get the shaving cream and razor inside of my mouth.
As of now there is no plan to insert a feeding tube, but that could change. I lost about 13 pounds in NZ when I was having the last shard episode. It's expected that I'll lose more weight in the weeks after the surgery while I am restricted to a totally liquid diet (being fed orally). If I can't keep up with the needed calories and nutrients orally, the feeding tube will be inserted.
Once out of the hospital my left foot will be a plastic boot and I'll be using a walker or crutches until the leg heals a bit. I'll be at home for most of the summer, with restricted mobility. Luckily I am scheduled to teach an on-line course this summer, so can do that from home by checking assignments and grading tests.
My first goal is to gain enough mobility and strength to walk the Peachtree 10K Road Race on the 4th of July. That is near the top of my Cancer Revenge List, and I will do my best to check that off again this year. My second goal is to be 100% back at GSU by the start of fall semester in mid-August.
The doctors painted a gory and sobering picture of what my face and mouth will look like right after the surgery. The scan showed that the ORN is more developed than first thought, so more of my jaw will be taken out, and more teeth with it. There will be more than one scar and they will be very long--one could go from behind one ear to behind the other ear, depending on how much damage there's been to some blood vessels from the radiation. Think: Al Pacino in "Scarface."
I already have some permanent numbness on my left side, and that area could get bigger. On the encouraging side, there is some possibility that they can remove some of the scar tissue caused by the radiation, to allow my mouth to open wider in the future--but that is at a 50/50 chance going in.
There are a lot more details, but this should give you the general idea and some kind of timeline for what Terry and I will be...er, facing in the next year or so in Cancer World.
It's the soon-daily return to Cancer World that is getting me down right now. Sticking with the Al Pacino theme here, like his classic scene when he say's "Just when I thought I was out, they keep pulling me back in..." After beating the Prairie Dogs once and living our lives as cancer survivors for a while, Terry and I are now sucked back into Cancer World's vortex, and we are both going to be challenged again--and in some ways more than we were five years ago. It's just not fucking fair.
But, we will face this new challenge the same way we did the first one, by doing what the doctors tell us, staying positive, laughing when we can (even if it hurts me to do that), and leaning heavily on Team Mike's support. Already, all of my out-of-town siblings have made plans to come down to help us through the roughest part--this summer. Please continue to send us your Good Vibes as the surgery approaches, and beyond. We will need them to make our way out of the vortex again.
Mike
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