It's t-minus four days--at this time on Thursday I should be about 8 hours into a procedure that could last 12-15 hours. After that I'll be in an induced coma for 2 or 3 days in the hopes that will get my healing off to a good start by keeping me motionless. I am told that people have great dreams in these comas, so I've asked Terry to bring me some headphones and let me listen to some Grateful Dead in that "happy place." If that can't generate some great dreams for me, even if a bit on the weird side--then nothing can.
Admitting to being in a very low state of mind since coming back from NZ and looking to May 1, I have come to grips with what will happen on May 1 and for a long time after. Don't confuse that with being happy about any of this shit, but I know that attitude will be a big factor for me and Terry as we go through this. The reality is that I didn't have a choice about the events that have led up to this, but the other side of that reality is that I have a choice in how I handle it. Just as I did five years ago with my cancer treatments, I'll get through this with pure grit, stubbornness, a good set of Eastern European genes, a sick sense of humor, great doctors, and support from Team Mike and its captain, Terry.
Oh yeah, and really good meds.
Speaking of a sick sense of humor, this is the gist of an exchange Terry and I had a few nights ago:
Mike: What is your biggest fear going into all of this?
Terry: That you won't live through it.
Mike: That isn't going to happen. Unlike the battle with the Prairie Dogs, this is not a life-threatening situation. It's just going to be long and difficult.
Terry: And, what's your biggest fear?
Before I could answer, she says "...that you WILL live through it?" (!!!)
Well--sorta kinda, really. I don't have any fears that I won't make it through the procedure or the long recovery period. My fear is that my quality of life is going to be severely lowered to a point that even doing the most everyday things like eating will be become a huge struggle and wear me down over time. And, while I don't consider myself to be a vain person, I do worry that I'll be so scarred that little kids in K-Mart will see me and run to their mothers, asking "Mommie, can I get a Halloween mask like that one?"
One of my favorite singer-songwriters was Warren Zevon, who passed away about 10 years ago. Facing his impending death from inoperable lung cancer, he was asked in an interview what he would say about his life in reflection. He said "I'd enjoy every sandwich." In that line of thought, Terry and I have been going to our favorite restaurants and cooking our favorite meals at home--on the chance that I might not ever be able to eat some of those things again. So, here's our list and my favorites:
Grindhouse Burgers (Green Chili Cheeseburgers)
Rosa's Pizza (pepperoni and ricotta)
Shorty's Pizza (pepperoni, extra sauce)
Daddy D'z (Smoked brisket and baked beans)
Community BBQ (pulled pork and ribs)
Rib Eyes on the grill (medium rare for me)
Cafe Lilly (goat cheese ravioli and chocolate fudge cake for dessert)
Terry's veggy soup
My chili
Tapatio Mexican (stuffed poblano peppers)
Terry's chocolate and blueberry pancakes
Ice cream at any hour of the day (OK, I'm cheating here. I know I'll be able to eat ice cream again)
We won't get to all of our favorites before May 1, but you get the idea.
This will be my last post until I come out of my coma and can clear my head of those Grateful Dead-induced dreams. So, please send your best Team Mike vibes to me and Terry that this operation goes off with no added complications and that I can get on the long road to a full recovery right away. If you want to check my status before I post again, feel free to call Terry.
In the meantime, enjoy a sandwich for me.
Mike
Sunday, April 27, 2014
Saturday, April 12, 2014
Back in the Vortex
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
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
Friday, April 4, 2014
It's a Shard, Shard, Shard World
It's a bit less than four weeks until the jaw surgery, and it looks like it's going to be just in time. After little more than a month since Trophy Shard II came out and my pain subsided enough for me to expand my range of safe foods a bit (love the fish and chips!), I discovered a well-developed Trophy Shard III this morning--still embedded. I felt my pain level inching up the last few days so I had some suspicion that another shard was coming through--but I was really surprised to feel that it's already at the surface. Normally it's about 5-6 months between shards surfacing--this one showed up after about only 6 weeks. The size of this new one, and its rate of development means that the ORN is progressing faster now--so the timing of the May 1 surgery is fortunate. To be honest, I am not sure my jaw can take another large shard coming out without causing it to fracture at the slightest bit of pressure on it.
Having to take two kinds of pain meds while the last shard ran its course was very difficult on me, and Terry. Since stopping the gabopentin I have been much more alert and have not had to take daily naps. My reduced food intake from that has caused me to lose almost 15 pounds while in NZ.
So, our return home will come just in time, and we'll have three weeks to get our kiwis in a row before it's time for the next chapter in this book.
Start your Good Vibes that this thing does not pop out while we're in NZ and bank them for the May 1 procedure and beyond.
Mike
Having to take two kinds of pain meds while the last shard ran its course was very difficult on me, and Terry. Since stopping the gabopentin I have been much more alert and have not had to take daily naps. My reduced food intake from that has caused me to lose almost 15 pounds while in NZ.
So, our return home will come just in time, and we'll have three weeks to get our kiwis in a row before it's time for the next chapter in this book.
Start your Good Vibes that this thing does not pop out while we're in NZ and bank them for the May 1 procedure and beyond.
Mike
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