"Hello, Emory University Hospital and Clinic. How may I help you?"
"My name is Mike Metzler and I'd like to make a reservation. I need my usual table for 1 with a wait staff of 30 in the Emory Midtown OR Suite for Friday, June 19th. You know, the really cold room with all the lights...Is it available?"
"Of course it is, Mr. Metzler. We were expecting your call. Mr Sejak from Wheel of Fortune told us you are a recent 'winner' on the show, and that we should give you the Deluxe SFL Package for your visit with us.Will you be needing a hospital room after your OR experience?"
"Duh ... I mean, yes. Do you have a room on the second floor open for the next 5-7 days?"
"Let me check Emoryhospitalrooms.com for availability and rates. One moment, please..
...thank you for waiting, Mr. Metzler. We do have a room for those nights, and we'll add an extra 4-5 nights, for you know--SFL."
"Great, I'll take it. What's the rate?"
"My ballpark estimate will be about $50,000, all inclusive. Just bring your jammies. How would you like to pay for that?"
"Just put it on my tab and send the bill to Blue Cross/Blue Shield of Georgia"
"Will do. Can I get anything else for you at this time, Mr. Metzler?"
"No, thanks--that's enough for one day"
Tuesday, April 28, 2015
Tuesday, April 21, 2015
Wheel of Fortune-- Special Show on Head/Neck Cancer
Fade out of cheesy music from "Wheel of Fortune Theme". Zoom to Pat Sejack on Stage right.
Pat:
Welcome to those of you at home for this special edition of "Wheel of Fortune," coming to you from Emory University Hospital in Atlanta, Georgia. Today we also have a special studio audience of Doctors from the hospital's Oral and Maxillofacial Surgery Department with us. Can those of you at home say "Max-il-lo-facial?" No, of course you can't--but these doctors can.
On today's show we are going to have only one contestant. He is a 62-year old professor at Georgia State University, right here in Atlanta, who is a 6-year survivor of Head/Neck cancer. Let's give a big "Wheel" welcome to Mike Metzler...
OK--back to Mike. Tell us a bit about how you got here today.
Mike:
Well, Pat, it turns out I was chosen for this Special Edition of "Wheel" because of my long history of having Shitty Fucking Luck, first by being diagnosed with a rare type of cancer in 2009, and then for checking off every one of the Top Ten Side Effects a person can get from my treatments--chemotherapy and radiotherapy--also known as "The gifts that keep on giving." I have seen over 60 doctors, have been subjected to 50 hyperbaric oxygen treatments, have been in and out of the emergency room more times that I can count, have had several esophageal dilations, had double cataract surgery, and a year ago had a full mandibular free flap resection where they cut out my left jaw and grafted in the fibula from my left leg.
Pat:
Is that why you talk with a limp?
Mike:
Yeth.
Pat:
Well, that really sucks and all...but doesn't Vanna look good today!
Mike, we have a special "Wheel" just for you today. All you have to do today is solve the Wheel Puzzle on your own. If you do, you can then spin the wheel to find out just what new kind of SFL is in your future. Are you ready?
Mike:
Yeth.
Pat:
OK, Vanna, show him the Puzzle.
OK, Mike. As you know you can try to solve the puzzle right away, or you can have your insurance company pay $25,000 for each letter you want to see first.
Mike:
I'm ready to solve the Puzzle.
Pat:
Are you sure? This looks like a hard one to me.
Mike:
I got this, you twit. Osteo-radio-necrosis.
Pat:
Huh? WTF is that?
Mike:
It's when your bones don't get enough blood supply. Over time they die and bone shards start to come out through your skin. My ORN was in my mouth.
Pat:
OK, Vanna, let's see if Mike is right.
Goddamn, he's right!
Mike:
This is a result of my radiation treatments in 2009. Since then my left jaw bone has been dying. that's why I had the free flap fibula replacement in 2014 and why I need more surgery coming up. I have a hole in my mouth that leaks out of the bottom of my chin. If you want to know what I just ate, just look at what's running down the front of my neck.
Pat:
Well, that's pretty gross and all...but doesn't Vanna look great today?
Mike, today, we have two very special members of our studio audience who are going to spin the wheel for you so you can find out just what that next surgery will be. Let's give a big "Wheel" welcome to Doctors Steven Roser and Thad Wadsworth of the Emory Maxillofacial surgery department. We know that you and your wife Terry have had many visits with these doctors in recent months. They have looked over all of the scans taken of your head and neck area, so they are the best ones to spin the wheel and make this decision for you.
First, let me explain the options they put on your very own Wheel of Head/Neck Cancer Fortune (Click to enlarge):
You could do nothing, and keep leaking your food out of the bottom of your mouth and down your neck.
You could have a debridement, where they scrape out any dead bone they find and hope that works.
You could have them patch you with caulk and duct tape. That might work, but your insurance won't pay for it.
You could have a radial free flap, where they take bone, skin and muscle from your arm to plug the gap and stop the leaking.
You could have a pectoral free flap. The same as the radial free flap, just no bones would be taken. They would put in a titanium plate to bridge the native chin with the new chin bone.
You could have a partial fibula free flap, where they take about 2 inches out of your right jaw and graft a part of your right fibula into that spot.
Or, you could have a full free fibula flap resection on the right side. The same thing you had last May, but a mirror image.
Mike:
Pat, one option is not there...
Pat:
Huh?
Mike:
The one where I get to go back to my life before cancer.
Pat:
You poor delusional bastard. That ain't never gonna happen...but doesn't Vanna look good?
Good one, Mike. Now, Doctors, please spin the wheel so Mike can see what's in store for him next in Cancer World.
The doctors give the Wheel a mighty spin. Mike notices that both of them have their fingers crossed--not a good sign.
Pat:
Wow, this is exciting, isn't it, Mike?
Mike:
(Fuck you, Pat)
Pat (as the Wheel shows down):
Oooh, you just missed that debridement and the pectoral flap with a titanium plate bridge. It's slowing down...down...down...heading towards a partial fibula flap--but it goes one tick past that to---
Mike:
GODDAMNMOTHERFUCKINGSONOFAFUCKINGBITCH!
Pat:
I thought you'd be overjoyed, so let me tell you what goes with that prize...
8-10 hours in your favorite operating room at Emory Midtown
5-7 days in the hospital
2-3 weeks of recovery at home (where you'll miss teaching summer classes)
And, there is an extra special prize with this surgery...you get another tracheotomy!
Mike (to doctors):
Can I have another spin...maybe the best two out of three?
Roser and Wadsworth:
Nope. Our schedulers will get back to you about the date. Eat every kind of food you can now, because you'll be on a strict liquid diet for a long time after this procedure. Oh, by the way, there is a small chance we'll have to do the partial fibula flap resection--look at how close it was on the Wheel. We won't know for sure until you are on the table.
Mike:
Will I be able to run the Peachtree on July 4th?
Roser:
Good question. If you wake up from the procedure and your left wrist is bandaged, that will be a good sign--we could stay with the radial free flap. You'll at least be able to walk the Peachtree. If you wake up and your right leg is bandaged--that means we had to use your right fibula...and you got no chance at the Peachtree. Basically, you'll get a replay of the last year of your life in Cancer World.
Pat:
Well, that concludes this Special Edition of "Wheel of Fortune." Stay tuned for more updates on how Mike and Terry fare during and after the coming procedure.
Pat:
Welcome to those of you at home for this special edition of "Wheel of Fortune," coming to you from Emory University Hospital in Atlanta, Georgia. Today we also have a special studio audience of Doctors from the hospital's Oral and Maxillofacial Surgery Department with us. Can those of you at home say "Max-il-lo-facial?" No, of course you can't--but these doctors can.
On today's show we are going to have only one contestant. He is a 62-year old professor at Georgia State University, right here in Atlanta, who is a 6-year survivor of Head/Neck cancer. Let's give a big "Wheel" welcome to Mike Metzler...
Before we get back to Mike, let me take this time to introduce my co-host, the lovely and ageless Vanna White:
Mike:
Well, Pat, it turns out I was chosen for this Special Edition of "Wheel" because of my long history of having Shitty Fucking Luck, first by being diagnosed with a rare type of cancer in 2009, and then for checking off every one of the Top Ten Side Effects a person can get from my treatments--chemotherapy and radiotherapy--also known as "The gifts that keep on giving." I have seen over 60 doctors, have been subjected to 50 hyperbaric oxygen treatments, have been in and out of the emergency room more times that I can count, have had several esophageal dilations, had double cataract surgery, and a year ago had a full mandibular free flap resection where they cut out my left jaw and grafted in the fibula from my left leg.
Pat:
Is that why you talk with a limp?
Mike:
Yeth.
Pat:
Well, that really sucks and all...but doesn't Vanna look good today!
Mike, we have a special "Wheel" just for you today. All you have to do today is solve the Wheel Puzzle on your own. If you do, you can then spin the wheel to find out just what new kind of SFL is in your future. Are you ready?
Mike:
Yeth.
Pat:
OK, Vanna, show him the Puzzle.
Mike:
I'm ready to solve the Puzzle.
Pat:
Are you sure? This looks like a hard one to me.
Mike:
I got this, you twit. Osteo-radio-necrosis.
Pat:
Huh? WTF is that?
Mike:
It's when your bones don't get enough blood supply. Over time they die and bone shards start to come out through your skin. My ORN was in my mouth.
Pat:
OK, Vanna, let's see if Mike is right.
Mike:
This is a result of my radiation treatments in 2009. Since then my left jaw bone has been dying. that's why I had the free flap fibula replacement in 2014 and why I need more surgery coming up. I have a hole in my mouth that leaks out of the bottom of my chin. If you want to know what I just ate, just look at what's running down the front of my neck.
Pat:
Well, that's pretty gross and all...but doesn't Vanna look great today?
First, let me explain the options they put on your very own Wheel of Head/Neck Cancer Fortune (Click to enlarge):
You could do nothing, and keep leaking your food out of the bottom of your mouth and down your neck.
You could have a debridement, where they scrape out any dead bone they find and hope that works.
You could have them patch you with caulk and duct tape. That might work, but your insurance won't pay for it.
You could have a radial free flap, where they take bone, skin and muscle from your arm to plug the gap and stop the leaking.
You could have a pectoral free flap. The same as the radial free flap, just no bones would be taken. They would put in a titanium plate to bridge the native chin with the new chin bone.
You could have a partial fibula free flap, where they take about 2 inches out of your right jaw and graft a part of your right fibula into that spot.
Or, you could have a full free fibula flap resection on the right side. The same thing you had last May, but a mirror image.
Mike:
Pat, one option is not there...
Pat:
Huh?
Mike:
The one where I get to go back to my life before cancer.
Pat:
You poor delusional bastard. That ain't never gonna happen...but doesn't Vanna look good?
Good one, Mike. Now, Doctors, please spin the wheel so Mike can see what's in store for him next in Cancer World.
The doctors give the Wheel a mighty spin. Mike notices that both of them have their fingers crossed--not a good sign.
Pat:
Wow, this is exciting, isn't it, Mike?
Mike:
(Fuck you, Pat)
Pat (as the Wheel shows down):
Oooh, you just missed that debridement and the pectoral flap with a titanium plate bridge. It's slowing down...down...down...heading towards a partial fibula flap--but it goes one tick past that to---
A RADIAL FREE FLAP!
Mike:
GODDAMNMOTHERFUCKINGSONOFAFUCKINGBITCH!
Pat:
I thought you'd be overjoyed, so let me tell you what goes with that prize...
8-10 hours in your favorite operating room at Emory Midtown
5-7 days in the hospital
2-3 weeks of recovery at home (where you'll miss teaching summer classes)
And, there is an extra special prize with this surgery...you get another tracheotomy!
Mike (to doctors):
Can I have another spin...maybe the best two out of three?
Roser and Wadsworth:
Nope. Our schedulers will get back to you about the date. Eat every kind of food you can now, because you'll be on a strict liquid diet for a long time after this procedure. Oh, by the way, there is a small chance we'll have to do the partial fibula flap resection--look at how close it was on the Wheel. We won't know for sure until you are on the table.
Mike:
Will I be able to run the Peachtree on July 4th?
Roser:
Good question. If you wake up from the procedure and your left wrist is bandaged, that will be a good sign--we could stay with the radial free flap. You'll at least be able to walk the Peachtree. If you wake up and your right leg is bandaged--that means we had to use your right fibula...and you got no chance at the Peachtree. Basically, you'll get a replay of the last year of your life in Cancer World.
Pat:
Well, that concludes this Special Edition of "Wheel of Fortune." Stay tuned for more updates on how Mike and Terry fare during and after the coming procedure.
Friday, April 10, 2015
Back in the Post-Cancer Vortex
Our meetings with Drs. Roser and Wadsworth this week have led to no decisions yet, but they are narrowing down the possibilities, and likely putting the final decision in our court. To have all of the information they and we need, I am having two scans done today. One will generate a 3D image of my head and neck, and the other will be a full body scan to make sure there are no Prairie Dogs hiding in my body.
I went in this morning to get the radioactive dye injected, and go back in a couple hours for the scans. The time is needed to make sure the dye gets fully distributed in my body--but I'm thinking it already has. I am in my office with the door closed and lights off, and a green glow is coming from the exposed skin areas of my body. When I open my mouth, it looks like my cell phone's flashlight app is on--just tinted green.
Seriously, while I was getting the prelim work this morning, they had to put me on the scanning machine to do some calibrations. All of a sudden it hit me that this is yet another trip into the post-Cancer Vortex, almost exactly a year after the last one that led to the jaw resection. Meetings with doctors, scans, planning, anticipation, decisions, some type of operation, days in hospital, days at home recovering, and who-knows-what-else this time through. As we have done in every other trip to the Vortex, we will do whatever we can to stay positive--and rely heavily on Team Mike to help us.
I'll post something again when decisions have been made about the upcoming procedure and when it might get done.
In the meantime, Terry and I are competing in a chili cookoff this weekend in SC. In addition to our red chilis and salsa, we are cooking chili verde. We call it "Green Flash Chili." For real--even I can't make that up.
Mike
I went in this morning to get the radioactive dye injected, and go back in a couple hours for the scans. The time is needed to make sure the dye gets fully distributed in my body--but I'm thinking it already has. I am in my office with the door closed and lights off, and a green glow is coming from the exposed skin areas of my body. When I open my mouth, it looks like my cell phone's flashlight app is on--just tinted green.
Seriously, while I was getting the prelim work this morning, they had to put me on the scanning machine to do some calibrations. All of a sudden it hit me that this is yet another trip into the post-Cancer Vortex, almost exactly a year after the last one that led to the jaw resection. Meetings with doctors, scans, planning, anticipation, decisions, some type of operation, days in hospital, days at home recovering, and who-knows-what-else this time through. As we have done in every other trip to the Vortex, we will do whatever we can to stay positive--and rely heavily on Team Mike to help us.
I'll post something again when decisions have been made about the upcoming procedure and when it might get done.
In the meantime, Terry and I are competing in a chili cookoff this weekend in SC. In addition to our red chilis and salsa, we are cooking chili verde. We call it "Green Flash Chili." For real--even I can't make that up.
Mike
Friday, April 3, 2015
I come with my own spare parts
I had a CT scan yesterday and we met with Dr. Roser this morning. The result of that meeting was to do a bone scan of my jaw with a nuclear dye, to see just how much the ORN had progressed on my right jaw side. It won't be definitive, but should give them a better picture and allow them to pick the most conservative and effective procedure. That is preferable to going in with 3-4 options and picking one once they see what's under the hood, so to speak.
Dr. Roser described several options for taking bone and/or tissue from various places on my body, to use to fill the gap between my grafted fibula and native jaw bone: wrist, chest, hip, scapula, and even a small part of my remaining fibula. It dawned on me that the doctors see my body as a collection of potential spare parts that can be used to fix any broken/diseased parts, like my jaw. And, those parts are "factory made," not after-market parts that might not fit right, or be rejected by my immune system.
Lucky me.
Dr. Roser described several options for taking bone and/or tissue from various places on my body, to use to fill the gap between my grafted fibula and native jaw bone: wrist, chest, hip, scapula, and even a small part of my remaining fibula. It dawned on me that the doctors see my body as a collection of potential spare parts that can be used to fix any broken/diseased parts, like my jaw. And, those parts are "factory made," not after-market parts that might not fit right, or be rejected by my immune system.
Lucky me.
Thursday, March 26, 2015
No News, Bad News, Good News
We met with Dr. Wadsworth this morning and got a very mixed bag of things to report.
First, he confirmed the need for more surgery. Some of
the native bone the fibula was fused to it has deteriorated from additional ORN, so I have a
small gap. It won’t heal by itself and could get larger, slowly.
The next step will be a new scan to see how much its deteriorated since the
December surgery and to use that to decide the extent of the next
surgery. He described four degrees of surgical complexity that could be
done, depending on the scan and what they find when they go in that day.
They range from taking a little bit of skin and tissue from my chest to plug
the holes, all the way to having a right jaw resection, which would essentially
put me back to where I was last May. There could even be a series of
several smaller surgeries as one option. So, more wait and see, to get
the scan done and then meet with him and Dr. Roser to come up with a plan and
date. Hopefully that can happen in 2-3 weeks.
The bad news is that it’s not going to happen soon, or on a
schedule we have much control over. This guy’s operating schedule is
booked for a few months ahead, and since my situation is not life threatening,
and I’m not in pain, he’s in no great hurry.
The good news is that we can now go up to New York State for Laura and
Mike’s wedding in late May. Terry has been working on the floral arrangements and really wanted to be there in person.
We’ll keep our fingers crossed that this
won’t interfere with going to NH in August for Paul and Tolah’s big day.
Mike
Monday, March 23, 2015
"So, now you talk with a limp?"
About two weeks ago I was describing my jaw resection of last May, and told a friend that they cut out my left jaw and took my left fibula to graft that in its place. He then quipped, "So, now you talk with limp?" I hadn't thought about it that way, but it's really true and explains why I now...stumble...over some words when I speak. Everyone's a comic around me--can't imagine why that's the case.
We have an appointment this Thursday with the new surgeon that Dr. Roser has brought on board--upping the count of docs since late 2008 to somewhere North of 60, I think. We'll find out the options for the next surgery, and hopefully pin down the date--but that might take another visit or two to know.
So, please send some Team Mike Good Vibes that we hear the least intrusive and fastest-healing option on Thursday. I have resigned myself to the need for this surgery, but I will not be happy if it means another round of IV antibiotics, another nasal feeding tube, and extended down time.
I was at a professional conference this past week and ran into someone I haven't seen since BC (Before Cancer). I said hello to her by name, but could tell she had no idea who I was, and she gave me one of those polite-to-a-stranger hellos back. After that event was over, she came over to me and apologized for not recognizing me, saying she was looking for the fully (grey) bearded, heavy set (polite way to say borderline obese) guy she knew years ago. That reminded me that I've not posted a picture of myself, and Terry, in a long time, so here's what we looked like at that event. So, suit by Men's Wearhouse, tie by The Jerry Garcia Collection, jaw by Roser, and large Band-Aid by Johnson & Johnson.
More after Thursday's appointment.
Mike
We have an appointment this Thursday with the new surgeon that Dr. Roser has brought on board--upping the count of docs since late 2008 to somewhere North of 60, I think. We'll find out the options for the next surgery, and hopefully pin down the date--but that might take another visit or two to know.
So, please send some Team Mike Good Vibes that we hear the least intrusive and fastest-healing option on Thursday. I have resigned myself to the need for this surgery, but I will not be happy if it means another round of IV antibiotics, another nasal feeding tube, and extended down time.
I was at a professional conference this past week and ran into someone I haven't seen since BC (Before Cancer). I said hello to her by name, but could tell she had no idea who I was, and she gave me one of those polite-to-a-stranger hellos back. After that event was over, she came over to me and apologized for not recognizing me, saying she was looking for the fully (grey) bearded, heavy set (polite way to say borderline obese) guy she knew years ago. That reminded me that I've not posted a picture of myself, and Terry, in a long time, so here's what we looked like at that event. So, suit by Men's Wearhouse, tie by The Jerry Garcia Collection, jaw by Roser, and large Band-Aid by Johnson & Johnson.
More after Thursday's appointment.
Mike
Saturday, March 7, 2015
Goddamnmotherfuckingsonofafuckingbitch
Well, that about sums up my meeting today with Dr. Roser.
It is now 100% certain that I will have another surgery in my jaw area. Exactly what it will be and when it will happen is still not decided yet. He wants to consult with a neck surgeon to figure out what needs to be done and the projected recovery time.
So, the gift of radiation therapy of 6 years ago keeps on giving. I have a hole in the bottom of my mouth, between my (surviving) front teeth and lips that leaks fluids from my mouth to under my chin. That leak can't be sealed without surgery and the wound from the last surgery can't heal until this stops leaking.
I did ask Dr. Roser if it just can't be sealed with caulk, but he said that the insurance company won't pay for that. Maybe I can get Home Depot to change that--like a leaky roof. Maybe my jaw needs to be struck by lightning.
All kidding aside, we are both officially over this shit, and the thought of more surgery and recovery time is not a fun one.
We will keep you posted, but in the meantime, please send your Good Vibes that we can can get through this current situation with just Superglue or Duck Tape.
mike
It is now 100% certain that I will have another surgery in my jaw area. Exactly what it will be and when it will happen is still not decided yet. He wants to consult with a neck surgeon to figure out what needs to be done and the projected recovery time.
So, the gift of radiation therapy of 6 years ago keeps on giving. I have a hole in the bottom of my mouth, between my (surviving) front teeth and lips that leaks fluids from my mouth to under my chin. That leak can't be sealed without surgery and the wound from the last surgery can't heal until this stops leaking.
I did ask Dr. Roser if it just can't be sealed with caulk, but he said that the insurance company won't pay for that. Maybe I can get Home Depot to change that--like a leaky roof. Maybe my jaw needs to be struck by lightning.
All kidding aside, we are both officially over this shit, and the thought of more surgery and recovery time is not a fun one.
We will keep you posted, but in the meantime, please send your Good Vibes that we can can get through this current situation with just Superglue or Duck Tape.
mike
Tuesday, February 17, 2015
Fare Thee Well, Longtermsurvivor
After not looking at the Cancer Survivor's Network for about two weeks, I went on tonight and read the bad news that I've expected for some time. My CSN friend, Pat (CSN handle, Longtermsurvivor) passed away on February 10th, ending his fourth bout with this disease. Pat was first diagnosed in 1998 and spent the years since then going in and out of remission, until he was given a terminal diagnosis this past summer. At that time he made the sacrifice to go through more chemo treatments to slow down the progress of the disease so that he and his wife could have as many days as possible together--and to be there for her as they dealt with some very serious family issues that he did not want to be made public.
I first started side conversations via email with Pat about three years ago, as my ORN issues started to surface and become very serious. He did not have ORN, but he knew a lot about if from his medical background and his research on it. He was there for me many times with important information, wit, and humor, and he monitored me closely before and after my jaw surgery in May of 2014.
Once I started to regain my strength after the surgery I asked Pat if I could come to visit him. He lived in Arkansas. I really wanted to meet him and hear his voice and feel his presence in person, even for just a few hours. But, by then he already had his terminal diagnosis and was slowly fading. The combination of new chemo treatments and dealing with his family situation was just too much--we were not able to find a time that he and his wife would be up for a visitor. I could tell from our last email exchange about a month ago that his time was short. Just a week or so ago it struck me that I had not heard back from him in a while, and I went to CSN to see if he had replied. If he had not, I would have tried to contact him. It was then I read that he had passed a week ago.
Goin' to leave this brokedown palace
On my hands and my knees I will roll, roll, roll
Make myself a bed by the waterside
In my time--in my time--I will roll, roll, roll
Going home, going home
by the waterside I will rest my bones
Listen to the river sing sweet songs
to rock my soul
For some reason I figured that if you could survive cancer three times that you have paid your dues and would be pretty much bullet-proof from the fucking Prairie Dogs for the rest of your life. Just another case that you can run but not hide from the Prairie Dogs forever, once they get you in their sights. Even if they don't come back to you in person, they will never leave you alone by taking others from your life--and get you to wondering "Am I next?" Pat gave them a run for their money, but they are cruel and persistent bastards.
Fare you well, fare you well...
There will be a hole in my heart for a long time.
(Using the internet I was able to locate Pat's Obituary, and added some of it below)
Dunlap, Dr. Patrick Shepherd Age 61 Rogers, AR. Passed away February 10, 2015 in the home after a long battle with cancer. He was born April 30, 1953 in Quantico, VA, the son of Dr. James H. Dunlap and Ara Jane Hill Dunlap. He was an OBGYN Physician in Joplin, MO for many years. He is preceded in death by his father. Survived by his wife Janet Diehl Dunlap of the home; children, Stephanie Thacker and husband Stephen of Bentonville, Chuck McGibbony of Rogers, Bethany Ballard of Rogers, Jared Ballard and wife Mary Nixon Ballard of Springfield, MO and Hannah Barrow of Chattanooga, TN; daughter-in-law Mechelle McGinnis of Rogers; his mother Ara Jane Dunlap of Omaha, NE; his siblings, Mary Virden of Kansas City; Paul Dunlap of Lincoln, NE; Ann Woolard of Omaha and Sarah Heckathorn of Colorado; eleven grandchildren and one great-grandchild.
I knew he had a medical background but not that he was an OBGYN.
Mike
I first started side conversations via email with Pat about three years ago, as my ORN issues started to surface and become very serious. He did not have ORN, but he knew a lot about if from his medical background and his research on it. He was there for me many times with important information, wit, and humor, and he monitored me closely before and after my jaw surgery in May of 2014.
Once I started to regain my strength after the surgery I asked Pat if I could come to visit him. He lived in Arkansas. I really wanted to meet him and hear his voice and feel his presence in person, even for just a few hours. But, by then he already had his terminal diagnosis and was slowly fading. The combination of new chemo treatments and dealing with his family situation was just too much--we were not able to find a time that he and his wife would be up for a visitor. I could tell from our last email exchange about a month ago that his time was short. Just a week or so ago it struck me that I had not heard back from him in a while, and I went to CSN to see if he had replied. If he had not, I would have tried to contact him. It was then I read that he had passed a week ago.
Goin' to leave this brokedown palace
On my hands and my knees I will roll, roll, roll
Make myself a bed by the waterside
In my time--in my time--I will roll, roll, roll
Going home, going home
by the waterside I will rest my bones
Listen to the river sing sweet songs
to rock my soul
For some reason I figured that if you could survive cancer three times that you have paid your dues and would be pretty much bullet-proof from the fucking Prairie Dogs for the rest of your life. Just another case that you can run but not hide from the Prairie Dogs forever, once they get you in their sights. Even if they don't come back to you in person, they will never leave you alone by taking others from your life--and get you to wondering "Am I next?" Pat gave them a run for their money, but they are cruel and persistent bastards.
Fare you well, fare you well...
There will be a hole in my heart for a long time.
(Using the internet I was able to locate Pat's Obituary, and added some of it below)
Dunlap, Dr. Patrick Shepherd Age 61 Rogers, AR. Passed away February 10, 2015 in the home after a long battle with cancer. He was born April 30, 1953 in Quantico, VA, the son of Dr. James H. Dunlap and Ara Jane Hill Dunlap. He was an OBGYN Physician in Joplin, MO for many years. He is preceded in death by his father. Survived by his wife Janet Diehl Dunlap of the home; children, Stephanie Thacker and husband Stephen of Bentonville, Chuck McGibbony of Rogers, Bethany Ballard of Rogers, Jared Ballard and wife Mary Nixon Ballard of Springfield, MO and Hannah Barrow of Chattanooga, TN; daughter-in-law Mechelle McGinnis of Rogers; his mother Ara Jane Dunlap of Omaha, NE; his siblings, Mary Virden of Kansas City; Paul Dunlap of Lincoln, NE; Ann Woolard of Omaha and Sarah Heckathorn of Colorado; eleven grandchildren and one great-grandchild.
I knew he had a medical background but not that he was an OBGYN.
Mike
Sunday, January 18, 2015
Waitin' an' Seein' and Good Vibes for Anne
It's been almost a month since the debridement under my chin and we are back into one of those wait-and-see periods to let the oral surgeon make his next decision. The best case scenario is that the antibiotics do their job to prevent any future infection, and that my body does its job to heal the surgical site and expel any dead bone that might have been missed. The worst case scenario is that the titanium plate in my jaw becomes infected and/or there is more ORN found. More ORN would mean that it's new ORN and on the right side of my jaw, indicating a need for a much more extensive surgery next time--maybe even a right-side resection. So, you can easily guess that we are hoping not to see any signs of infection and/or new ORN. When I ask Dr. Roser about the chances for more extensive surgery, he is honest that it's not out of the question, but is also cautiously optimistic that it won't be needed.
So, we wait, and in the meantime I deal with my limited ability to eat and chew food and try not to gross anyone out by seeing the goop coming out of the sizable hole under my chin. I change the very large band-aid several times a day so it doesn't get saturated and leak.
One other thing I'm dealing with is the need to talk very slowly and be very careful to articulate my words well. Those of you who know me best understand that I would often engage my mouth before I engaged my brain and said a lot of dumb stuff. Now it's the opposite. My brain is well ahead of my mouth because I have to think about what I want to say in order to get out every word as clearly as I can.
That officially...sa sa sa sucks.
Terry and I have stopped counting the number of people in our lives who have dealt with cancer since my onset, either as patients or caregivers. The newest person in that unknown number is Anne Culpan, the wife of Ian Culpan--my host last year at the University of Canterbury in New Zealand. Ian wrote recently that Anne was diagnosed with intestinal cancer and had emergency surgery right after Christmas. A large malignant tumor was removed during the surgery. We have not heard any updates yet, but Anne and Ian can sure use some Team Mike Good Vibes to help them get through this. Anne is a strong woman, with a quick wit who made us feel so much at home during our time in NZ. We took the news about her very hard.
mike
So, we wait, and in the meantime I deal with my limited ability to eat and chew food and try not to gross anyone out by seeing the goop coming out of the sizable hole under my chin. I change the very large band-aid several times a day so it doesn't get saturated and leak.
One other thing I'm dealing with is the need to talk very slowly and be very careful to articulate my words well. Those of you who know me best understand that I would often engage my mouth before I engaged my brain and said a lot of dumb stuff. Now it's the opposite. My brain is well ahead of my mouth because I have to think about what I want to say in order to get out every word as clearly as I can.
That officially...sa sa sa sucks.
Terry and I have stopped counting the number of people in our lives who have dealt with cancer since my onset, either as patients or caregivers. The newest person in that unknown number is Anne Culpan, the wife of Ian Culpan--my host last year at the University of Canterbury in New Zealand. Ian wrote recently that Anne was diagnosed with intestinal cancer and had emergency surgery right after Christmas. A large malignant tumor was removed during the surgery. We have not heard any updates yet, but Anne and Ian can sure use some Team Mike Good Vibes to help them get through this. Anne is a strong woman, with a quick wit who made us feel so much at home during our time in NZ. We took the news about her very hard.
mike
Friday, December 26, 2014
So far so good
We were not supposed to see Dr. Roser until Tuesday, but he had an unanticipated opening in his schedule and asked us to come in. He is pleased with how things look at this early stage. No sign of infection--just the expected amount of swelling. Other than the swelling restricting my mouth opening a bit, I am very comfortable--just one Oxyconin a day for...oh, yeah, pain. Well, that's my story and I'm sticking to it. No joke about that--I do not want to have to go through withdrawal for a fourth time.
Thanks for your Team Mike Good Vibes. They are pulling us through once again. But do keep them coming--the next few weeks will give Dr. Roser the signs of what will come next, and when.
Happy New Year and have a safe 2015.
Mike
Thanks for your Team Mike Good Vibes. They are pulling us through once again. But do keep them coming--the next few weeks will give Dr. Roser the signs of what will come next, and when.
Happy New Year and have a safe 2015.
Mike
Tuesday, December 23, 2014
Quick update
We got home around noon and I slept a bit. Terry was till too wired for that.
As is often the case with this, a mix of good news and bad news. The good news is that the jaw/fibula area is healing well on a visual inspection. The surgeon had clear margins with the dead bone tissue, so that was easy to scrape out. He extracted two teeth, not just the one that was planned. The procedure needed a bit more effort than planned and that's the start of some potentially bad news. Three screws were infected as was one end of the titanium plate. The screws were easy to replace, but a plate replacement was beyond the scope of this procedure. The plan is to up the antibiotics in hopes of the infection healing, but that appears to be a long shot. In all likelihood there will be another procedure to replace the plate, but no way to know when that might need to happen.
So, I am home eating ice cream and we are binge watching "The Good Wife."
Merry Christmas to all and I'll update more when something changes.
Mike
As is often the case with this, a mix of good news and bad news. The good news is that the jaw/fibula area is healing well on a visual inspection. The surgeon had clear margins with the dead bone tissue, so that was easy to scrape out. He extracted two teeth, not just the one that was planned. The procedure needed a bit more effort than planned and that's the start of some potentially bad news. Three screws were infected as was one end of the titanium plate. The screws were easy to replace, but a plate replacement was beyond the scope of this procedure. The plan is to up the antibiotics in hopes of the infection healing, but that appears to be a long shot. In all likelihood there will be another procedure to replace the plate, but no way to know when that might need to happen.
So, I am home eating ice cream and we are binge watching "The Good Wife."
Merry Christmas to all and I'll update more when something changes.
Mike
Friday, December 19, 2014
Deja Vu, All Over Again
So, class, before we move on, let's do a quick review of some things we've discussed in previous lectures.
First, can you say "Osteoradionecrois"? That would be Os-tee-o ray-di-o ne-cro-sis. Who can tell me what that is? No peaking at previous posts, Harv.
The correct answer is "Dead bone from radiation therapy treatments." If you got that right, give yourself one point.
Next (gimme) question: What is the acronym for Osteoradionecrosis?
Several students raise their hands and shout, "Ooo, Ooo, Ooo I know that one--call on me"
Answer is ORN--everyone gets a point for that.
OK--now put your thinking caps on--this is a toughie. What causes ORN?
Several seconds of wait time passes--no answers.
Mike says--"It's when a bone area doesn't get enough blood supply, and the bone tissue dies. Anyone who had Sister Mary Latin at Walsh should know the root words: necrosis (dead) osteo (bone) from (from) radio waves (radiation treatments--the gift that keeps on giving). Everyone say 10 Hail Marys and do 3 Stations of the Cross for not knowing that."
Mike proceeds: What happens when ORN advances too far?
Pre-Med Paully takes a shot and answers--"The bone dies from a lack of blood supply and gradually separates from the healthy bone as a shard. The biggest ones are called Trophy Shards."
Good answer, Paully--have a brownie
Let's moves on with the review. When you have a lot of ORN in your jaw and it won't get better, what do they do?
Several students answer:
(Phantom): "They take out your jaw bone and stick one of your leg bones in there. I'm a chiropractor, I know the right anatomical terms for ALL of this. Just ask me"
(Mike): "Sure, I'll ask you to sit down and shut up"
(Alisa): "They put you in ICU and induce a coma for several days"
(Andy): "Yes, while your friends make bad jokes about you"
(Jeff): "You see 6-legged swimming lizards, and think you've been on a plane ride with me"
(Terry): "Then they move you to the 9th floor so that a nurse can scan your billing bracelet while you are urinating. After about two weeks they let you go home so I can stay up all night giving you IV antibiotics and hand baths"
(Mike): "Yes, you are all correct. Have an Oxycontin--two for Terry."
Susan Catherine Wheeler impatiently raises her hand and asks, "I thought this was from three chapters ago in the book. Why are we going over this stuff again?"
(Mike): "Well, class, it appears that some of this shit is about to get a replay, so you need to make sure you have a good understanding of the chapters from May of 2014 and the next few months to understand the next chapters in the book."
Back to the present--I had a CT scan this past Monday and we met with Dr. Roser the next day. The news was not the worst it could have been (a major re-do of the May resection), but it also was not the quickie office procedure we had hoped for. I have an infection in the left side of my jaw, next to the union of the remaining original jaw bone and the grafted fibula. This is caused by new ORN since the May procedure, which has led to some funky stuff and blood draining out under my chin for the past few months. After a long period of wait-and-see, Dr. Roser is sure it won't resolve on its own, so he will cut down one of the original incision lines, do a debridement to scrape out the dead bone, replace one or two surgical screws, and take out one more tooth.
I spent a few hours today going through the pre-op routine at Emory and having some bad Deja Vu from the same sequence of events for the May procedure. Even though I know this time should be much less of an ordeal (about 2 hours in the OR, not 12--and home that evening, not 13 days later), I had this awful feeling of being sucked into the Vortex again (bonus points for whoever can find that in an earlier post), after thinking I would never be in that place again. Well, guess what--I have a return ticket to the Vortex, dated December 23, 2014.
Dr. Roser says there is some small chance of finding more ORN than what he thinks is there, and having to replace the plates in my jaw, not just the screws. If that happens, then we will yet again be victims of SFL (more bonus points for that--and don't look for it on Wikipedia) and all out-patient bets are off. I told Terry that if I go under sedation on the 23rd and don't wake up until Santa has come and gone, I'll be really pissed.
So, what does Team Mike need to send Good Vibes for this time?
(a), get my insurance company to approve the procedure on short notice so it can happen on the 23rd;
(b) make the procedure safe, with no surprises;
(c) give Dr. Roser a steady hand;
(d) make the recovery as short and uneventful as possible.
Answer: All of the above.
If all goes well, I'll post the next day to let you know. If it doesn't go to plan, then I'll ask Terry to keep you posted for me. If I don't wake up for Christmas, please don't open my gifts or take stuff out of my stocking.
Santa, the Roxicet and cookies are for you. Enjoy.
OK, class--that's it for today.
Mike
First, can you say "Osteoradionecrois"? That would be Os-tee-o ray-di-o ne-cro-sis. Who can tell me what that is? No peaking at previous posts, Harv.
The correct answer is "Dead bone from radiation therapy treatments." If you got that right, give yourself one point.
Next (gimme) question: What is the acronym for Osteoradionecrosis?
Several students raise their hands and shout, "Ooo, Ooo, Ooo I know that one--call on me"
Answer is ORN--everyone gets a point for that.
OK--now put your thinking caps on--this is a toughie. What causes ORN?
Several seconds of wait time passes--no answers.
Mike says--"It's when a bone area doesn't get enough blood supply, and the bone tissue dies. Anyone who had Sister Mary Latin at Walsh should know the root words: necrosis (dead) osteo (bone) from (from) radio waves (radiation treatments--the gift that keeps on giving). Everyone say 10 Hail Marys and do 3 Stations of the Cross for not knowing that."
Mike proceeds: What happens when ORN advances too far?
Pre-Med Paully takes a shot and answers--"The bone dies from a lack of blood supply and gradually separates from the healthy bone as a shard. The biggest ones are called Trophy Shards."
Good answer, Paully--have a brownie
Let's moves on with the review. When you have a lot of ORN in your jaw and it won't get better, what do they do?
Several students answer:
(Phantom): "They take out your jaw bone and stick one of your leg bones in there. I'm a chiropractor, I know the right anatomical terms for ALL of this. Just ask me"
(Mike): "Sure, I'll ask you to sit down and shut up"
(Alisa): "They put you in ICU and induce a coma for several days"
(Andy): "Yes, while your friends make bad jokes about you"
(Jeff): "You see 6-legged swimming lizards, and think you've been on a plane ride with me"
(Terry): "Then they move you to the 9th floor so that a nurse can scan your billing bracelet while you are urinating. After about two weeks they let you go home so I can stay up all night giving you IV antibiotics and hand baths"
(Mike): "Yes, you are all correct. Have an Oxycontin--two for Terry."
Susan Catherine Wheeler impatiently raises her hand and asks, "I thought this was from three chapters ago in the book. Why are we going over this stuff again?"
(Mike): "Well, class, it appears that some of this shit is about to get a replay, so you need to make sure you have a good understanding of the chapters from May of 2014 and the next few months to understand the next chapters in the book."
Back to the present--I had a CT scan this past Monday and we met with Dr. Roser the next day. The news was not the worst it could have been (a major re-do of the May resection), but it also was not the quickie office procedure we had hoped for. I have an infection in the left side of my jaw, next to the union of the remaining original jaw bone and the grafted fibula. This is caused by new ORN since the May procedure, which has led to some funky stuff and blood draining out under my chin for the past few months. After a long period of wait-and-see, Dr. Roser is sure it won't resolve on its own, so he will cut down one of the original incision lines, do a debridement to scrape out the dead bone, replace one or two surgical screws, and take out one more tooth.
I spent a few hours today going through the pre-op routine at Emory and having some bad Deja Vu from the same sequence of events for the May procedure. Even though I know this time should be much less of an ordeal (about 2 hours in the OR, not 12--and home that evening, not 13 days later), I had this awful feeling of being sucked into the Vortex again (bonus points for whoever can find that in an earlier post), after thinking I would never be in that place again. Well, guess what--I have a return ticket to the Vortex, dated December 23, 2014.
Dr. Roser says there is some small chance of finding more ORN than what he thinks is there, and having to replace the plates in my jaw, not just the screws. If that happens, then we will yet again be victims of SFL (more bonus points for that--and don't look for it on Wikipedia) and all out-patient bets are off. I told Terry that if I go under sedation on the 23rd and don't wake up until Santa has come and gone, I'll be really pissed.
So, what does Team Mike need to send Good Vibes for this time?
(a), get my insurance company to approve the procedure on short notice so it can happen on the 23rd;
(b) make the procedure safe, with no surprises;
(c) give Dr. Roser a steady hand;
(d) make the recovery as short and uneventful as possible.
Answer: All of the above.
If all goes well, I'll post the next day to let you know. If it doesn't go to plan, then I'll ask Terry to keep you posted for me. If I don't wake up for Christmas, please don't open my gifts or take stuff out of my stocking.
Santa, the Roxicet and cookies are for you. Enjoy.
OK, class--that's it for today.
Mike
Saturday, November 22, 2014
A Mixed Bag of News this Week
I had four doctors' appointments this week--all of them related in one way or another to my 2009 cancer, my treatments and the resulting side effects. Most important and best news first--the PET scan showed No Evidence of Disease, either in the primary area or any place above my hips. That means I am now six years with NED, and the lead oncologist says that he'll order no more PET scans in the future unless there is a certain need for them down the road. I'll now get annual CT scans instead.
Those Deadheads out there will recognize this adjusted chorus from a certain song:
N-E-D, N-E-D
Ain't no letters I'd rather see
Doc checked the scan and said to me--
Mike, you're N-E-D!
The news from the oral surgeon wasn't quite that good, and will lead to more wait-and-see about any further surgery on my jaw. Some of the news from him was good--he was able to wiggle out the growing bone shard in my jaw--and it was trophy-shard big. That's good news because it means my body is fighting off additional necrosis, so if the soft tissue covers over the area where the dead bone came from, no more surgery will be needed in that specific location. If the necrosis continues or gets larger, then we could be looking at a partial re-do of the major jaw surgery. He is also a bit concerned about a small area just on the right side and under of my chin that is oozing some puss and blood on a pretty regular basis. It is likely that one of the surgical screws is infected so he prescribed some antibiotics for me. If those don't do the trick, I'll have some outpatient surgery in late December or early January to replace the screw--thus the wait-and-see decision.
So, please send Good Vibes that both of these issues don't escalate into more surgery--especially the possible larger procedure.
While we had a lot of good news this week, we also got some bad news that Deb Pangrazi's cancer has returned. She had ovarian cancer in 2010 (see January 15, 2010 posting) and put up a great battle to survive it. The docs now say she has chest or lung cancer and they are doing the early diagnostic work to get a better picture so they can start treating it soon. Please, please send her and her husband Bob the best Team Mike Good Vibes you can muster--we are fearing the worst from this news.
Mike
Those Deadheads out there will recognize this adjusted chorus from a certain song:
N-E-D, N-E-D
Ain't no letters I'd rather see
Doc checked the scan and said to me--
Mike, you're N-E-D!
The news from the oral surgeon wasn't quite that good, and will lead to more wait-and-see about any further surgery on my jaw. Some of the news from him was good--he was able to wiggle out the growing bone shard in my jaw--and it was trophy-shard big. That's good news because it means my body is fighting off additional necrosis, so if the soft tissue covers over the area where the dead bone came from, no more surgery will be needed in that specific location. If the necrosis continues or gets larger, then we could be looking at a partial re-do of the major jaw surgery. He is also a bit concerned about a small area just on the right side and under of my chin that is oozing some puss and blood on a pretty regular basis. It is likely that one of the surgical screws is infected so he prescribed some antibiotics for me. If those don't do the trick, I'll have some outpatient surgery in late December or early January to replace the screw--thus the wait-and-see decision.
So, please send Good Vibes that both of these issues don't escalate into more surgery--especially the possible larger procedure.
While we had a lot of good news this week, we also got some bad news that Deb Pangrazi's cancer has returned. She had ovarian cancer in 2010 (see January 15, 2010 posting) and put up a great battle to survive it. The docs now say she has chest or lung cancer and they are doing the early diagnostic work to get a better picture so they can start treating it soon. Please, please send her and her husband Bob the best Team Mike Good Vibes you can muster--we are fearing the worst from this news.
Mike
Sunday, November 16, 2014
Neat story, some updates, and Good Vibes needed
I am a member of the Cancer Survivors' Network, which is a great virtual community for current cancer patients, their caregivers, and those like me who have been fortunate enough to survive this terrible disease. It is very helpful in many ways and every so often someone posts something that we all think makes for great reading to put our experiences with cancer into perspective. This was a great example of that:
http://www.ted.com/talks/debra_jarvis_yes_i_survived_cancer_but_that_doesn_t_define_me/transcript?language=en
The name of the link gives you the gist of her story, but you should read it for the full message. While cancer has been the most defining thing in my life since 2009, I have made every effort not to let cancer define who I am as person. If someone on that train has asked me, I would have told them "I am..."
Terry's husband and best friend
Dear friend to a handful of special people in my life
Sibling to three brothers and four sisters
A good teacher and mentor to my students
"A cancer survivor" would not even make the top 10. To do that would give the Prairie Dogs too much credit and admit that they took part of my identity along with the physical damage they and their treatments have done to my body. I agree with Debra--even though I am reminded several times every day that I had cancer and survived it--I won't let it define who I am as a person.
I have not heard from Steve in a while so can't give an update on his status--so if you are reading this, Steve, let me know how you are doing. I did hear last week that a professional friend in California, Shane, has had a recurrence of his Leukemia and will undergo another round or two of chemo in the coming weeks and months. Please send him your best Good Vibes. I will admit that my biggest fear would be to have to face a second attack by the Prairie Dogs and the barbaric treatments they call for. The first round nearly killed me and I was much stronger and 6 years younger when I had to take that on. It is said that every battle with cancer takes a physical, mental, and emotional toll that can't be recovered from 100%, so you start the second round with less reserve than the first. Shane is now living my worst fear, and I hope he can summon the strength and support to fight this disease again.
All of that makes me amazed that my friend from Arkansas, Pat, is somehow still enduring his fourth bout with cancer. He has been told that he won't survive, but he's hung in there for a lot longer than predicted. Please send him your best Good Vibes for a peaceful and painless time until the inevitable does happen. I've told him I'd like to visit him if at all possible, and am hoping he can find a window of opportunity before he becomes too weak for that.
The last, and least necessary Good Vibes are needed for me this week. I have my annual scan tomorrow and feel no reason why it won't be another NED (No Evidence of Disease) result. I see the oncologist on Friday to hear those results from him in person. Also this week I have an appointment with my oral surgeon who will give me his latest assessment of the bone necrosis in my front left jaw. I already know that he will tell me it's getting larger, but I don't know how much longer he'll keep watching it before more surgery is needed--or what the extent of that procedure will be.
More on my status soon, but please send your thoughts and Good Vibes to Shane and Pat this week.
Mike
http://www.ted.com/talks/debra_jarvis_yes_i_survived_cancer_but_that_doesn_t_define_me/transcript?language=en
The name of the link gives you the gist of her story, but you should read it for the full message. While cancer has been the most defining thing in my life since 2009, I have made every effort not to let cancer define who I am as person. If someone on that train has asked me, I would have told them "I am..."
Terry's husband and best friend
Dear friend to a handful of special people in my life
Sibling to three brothers and four sisters
A good teacher and mentor to my students
"A cancer survivor" would not even make the top 10. To do that would give the Prairie Dogs too much credit and admit that they took part of my identity along with the physical damage they and their treatments have done to my body. I agree with Debra--even though I am reminded several times every day that I had cancer and survived it--I won't let it define who I am as a person.
I have not heard from Steve in a while so can't give an update on his status--so if you are reading this, Steve, let me know how you are doing. I did hear last week that a professional friend in California, Shane, has had a recurrence of his Leukemia and will undergo another round or two of chemo in the coming weeks and months. Please send him your best Good Vibes. I will admit that my biggest fear would be to have to face a second attack by the Prairie Dogs and the barbaric treatments they call for. The first round nearly killed me and I was much stronger and 6 years younger when I had to take that on. It is said that every battle with cancer takes a physical, mental, and emotional toll that can't be recovered from 100%, so you start the second round with less reserve than the first. Shane is now living my worst fear, and I hope he can summon the strength and support to fight this disease again.
All of that makes me amazed that my friend from Arkansas, Pat, is somehow still enduring his fourth bout with cancer. He has been told that he won't survive, but he's hung in there for a lot longer than predicted. Please send him your best Good Vibes for a peaceful and painless time until the inevitable does happen. I've told him I'd like to visit him if at all possible, and am hoping he can find a window of opportunity before he becomes too weak for that.
The last, and least necessary Good Vibes are needed for me this week. I have my annual scan tomorrow and feel no reason why it won't be another NED (No Evidence of Disease) result. I see the oncologist on Friday to hear those results from him in person. Also this week I have an appointment with my oral surgeon who will give me his latest assessment of the bone necrosis in my front left jaw. I already know that he will tell me it's getting larger, but I don't know how much longer he'll keep watching it before more surgery is needed--or what the extent of that procedure will be.
More on my status soon, but please send your thoughts and Good Vibes to Shane and Pat this week.
Mike
Wednesday, October 29, 2014
More updates
I have heard from Steve a few times and he seems to be doing OK. He had his PICC line removed so the 4 times a day antibiotics infusions are over and he is getting back to a normal sleep schedule. That is a big step in the right direction. He's now in the slow-but-steady stage of healing and gradually getting back to eating solid foods.
You might remember my friend and mentor from Cancer Survivors' Network, Pat. He guided me through the ORN developments leading up to the jaw surgery in May. Pat is now in his fourth bout with cancer, and the docs say that it's not curable. He can be treated to slow down the cancer's progress, but those treatments are taking a heavy toll on him. Please send some Team Mike Good Vibes to him in Arkansas so that he can hang in their for more time with his wife before the inevitable comes around. I am trying to find a time to visit him, but the opportunities to do that are fading fast. If and when he is up to it, I'll get there.
As for me, we had two appointments yesterday that made us a bit unsettled, but nothing to worry about just yet. I saw my ENT to ask him about my bouts with vertigo. He said that given my history of disease and radical treatments in the head/neck area, the vertigo could be from any number of things--including the May surgery. He has now put me on a watch, with follow up in December.
Later that day my oral surgeon told me what I already knew--I have a protrusion of exposed and dead bone in my mouth, right where the natural jaw bone is connected to my...well, you know--my leg bone. He said that this is somewhat common, and his hope is that the bone will just continue to die and come out on its own--like my old stuff with ORN shards. If it doesn't, he'll have to go in and remove the dead bone surgically, like one of the debridements I had two or three years ago.
A bit more alarming was his examination of a spot under my chin that opens up and oozes 'stuff' every so often. That could be a sign of infection on the titanium plate. If so, the best hope is that it will respond to antibiotics. The worse case scenario is that the plate will have to come out and be replaced with a new one--basically most of what was done in May, minus the new leg bone being inserted.
So, both docs are now watching these developments closely. I have my annual PET scan in December. That will give them a good look at what's going on with both things, and also give me some time to monitor stuff myself.
Our job is to stay calm and be watchful for any signs before the December scan. Your job is to crank up the Good Vibes machine that has worked so well in the past so that both of these things turn into false alarms.
Mike
You might remember my friend and mentor from Cancer Survivors' Network, Pat. He guided me through the ORN developments leading up to the jaw surgery in May. Pat is now in his fourth bout with cancer, and the docs say that it's not curable. He can be treated to slow down the cancer's progress, but those treatments are taking a heavy toll on him. Please send some Team Mike Good Vibes to him in Arkansas so that he can hang in their for more time with his wife before the inevitable comes around. I am trying to find a time to visit him, but the opportunities to do that are fading fast. If and when he is up to it, I'll get there.
As for me, we had two appointments yesterday that made us a bit unsettled, but nothing to worry about just yet. I saw my ENT to ask him about my bouts with vertigo. He said that given my history of disease and radical treatments in the head/neck area, the vertigo could be from any number of things--including the May surgery. He has now put me on a watch, with follow up in December.
Later that day my oral surgeon told me what I already knew--I have a protrusion of exposed and dead bone in my mouth, right where the natural jaw bone is connected to my...well, you know--my leg bone. He said that this is somewhat common, and his hope is that the bone will just continue to die and come out on its own--like my old stuff with ORN shards. If it doesn't, he'll have to go in and remove the dead bone surgically, like one of the debridements I had two or three years ago.
A bit more alarming was his examination of a spot under my chin that opens up and oozes 'stuff' every so often. That could be a sign of infection on the titanium plate. If so, the best hope is that it will respond to antibiotics. The worse case scenario is that the plate will have to come out and be replaced with a new one--basically most of what was done in May, minus the new leg bone being inserted.
So, both docs are now watching these developments closely. I have my annual PET scan in December. That will give them a good look at what's going on with both things, and also give me some time to monitor stuff myself.
Our job is to stay calm and be watchful for any signs before the December scan. Your job is to crank up the Good Vibes machine that has worked so well in the past so that both of these things turn into false alarms.
Mike
Monday, September 15, 2014
Update on Steve and me (I?)
I have heard from Steve twice lately and it appears he's doing OK. Still in the early stages of recovery and trying to negotiate his way around the swelling, swallowing, etc. He was in the hospital for about 10 days, which is about par for the course--so that's a good sign.
My own recovery has stalled a bit, but I am told that is not unusual. I saw the orthopeadic doc today and he ordered a nerve test (EMG) to figure out what's going on with the nerves in my left neck/shoulder area. From that they will know which nerve/s are not firing correctly and be able to estimate how much regeneration I can expect.
mike
My own recovery has stalled a bit, but I am told that is not unusual. I saw the orthopeadic doc today and he ordered a nerve test (EMG) to figure out what's going on with the nerves in my left neck/shoulder area. From that they will know which nerve/s are not firing correctly and be able to estimate how much regeneration I can expect.
mike
Tuesday, September 2, 2014
Back on a plateau
After some optimistic improvement about 2 weeks ago, my leg and shoulder seem to have stayed the same and maybe gotten a bit worse. Probably par for the course (2 steps forward, 1 step back), but it has been a bit disappointing. I had hoped to be doing some light jogging by now, but that is still in the distant future. I can still pick my nose with my left hand, so it's not been a total retreat.
The plan is to see the orthopedic doc on 9/8 to schedule a MRI for the shoulder.
No word yet from Steve Nau on his jaw surgery, so just keeping the Good Vibes going for him until he gets back in touch. Please do the same.
Mike
The plan is to see the orthopedic doc on 9/8 to schedule a MRI for the shoulder.
No word yet from Steve Nau on his jaw surgery, so just keeping the Good Vibes going for him until he gets back in touch. Please do the same.
Mike
Saturday, August 23, 2014
Gear up for Steve
My ORN buddy from CA has his jaw replacement surgery on this coming Tuesday. Please pile up a lot of Good Vibes for Steve Nau and his wife Sandy, and keep them going until I get a sign that they are doing OK. We were very scared going into my procedure in May and it turned out to be twice the struggle we were prepared for. But with lots of help from Terry and Team Mike and visits from my many siblings, we have made it through. Steve needs the same kind of support.
After staying on a plateau of sorts with the healing in my leg and foot I have made great progress in just the last 2-3 days. My gait is almost even on both sides and the feelings of weakness are gone for the most part. Just woke up one morning and had none of the creaks and stiffness in that area and have not used the brace since.
The left shoulder remains a problem, but that too is getting better. I discovered a large knot in the trapezius muscle and have been massaging that regularly. The knot is still there, but it seems to be loosening up a bit and I have more range of motion too. I still can't reach to scratch the back of my neck, but I can now pick my nose with my left hand, so will call that excellent progress.
You define 'progress' your way, I'll do it my way.
Please keep Steve and Sandy in your thoughts next week.
Mike
After staying on a plateau of sorts with the healing in my leg and foot I have made great progress in just the last 2-3 days. My gait is almost even on both sides and the feelings of weakness are gone for the most part. Just woke up one morning and had none of the creaks and stiffness in that area and have not used the brace since.
The left shoulder remains a problem, but that too is getting better. I discovered a large knot in the trapezius muscle and have been massaging that regularly. The knot is still there, but it seems to be loosening up a bit and I have more range of motion too. I still can't reach to scratch the back of my neck, but I can now pick my nose with my left hand, so will call that excellent progress.
You define 'progress' your way, I'll do it my way.
Please keep Steve and Sandy in your thoughts next week.
Mike
Wednesday, August 6, 2014
Progress Report, and Update on Maureen
I continue to make good progress and getting stronger every day. My diet is pretty much back to where it was a year ago. I use the liquid food only as a convenient choice 2-3 mornings a week, and for a quick snack between meals. My weight has stabilized where I'd like to have it, but watch it a lot to make sure it doesn't creep up or slip down too much.
Terry found a great compression/brace for my left ankle and I wear that now instead of the compression hose and plastic ankle brace. It is much easier to get on and off, and gives me more lateral stability and better balance. The drop foot is still evident, but mostly only when those muscles get fatigued.
Thanks to PT and trips to the chiropractor my left shoulder is getting better, too. I have more range of motion and am gaining a bit of strength in that joint. I still can't lift much weight with it, but it is getting a lot better.
My chiropractor has also fixed my back problems, that were definitely a result of being out of alignment in my left ankle. I now walk with a more fluid gait, and can walk longer distances before I get tired. I might be jogging again before too long, dare I say it!
My chiropractor is Maureen, who I mentioned a few months ago as being diagnosed with colorectal cancer. I am glad to report that she is back at work on a reduced schedule and the docs say her cancer is shrinking from the chemo. She still takes a dose of chemo on a regular basis, and has more infusions ahead, but it would appear that it's working--so far. Keep your fingers crossed for her continued improvement.
Terry and I are starting to get back to the new-normal of being cancer survivors, by doing some projects around the house that went by the way in May and June, and by doing some limited travel. We are going to Asheville NC later this month for a short getaway, and have a contracting crew ready to start a remodeling of our house front entry. Terry is gearing up for her annual Scarecrow in the Garden sculpture, and I'm making plans to put in a wood working shop in the basement. And, we recently entered our next chili cookoff. It's not until November, but it felt nice to be able to plan ahead that far.
More soon.
Mike
Terry found a great compression/brace for my left ankle and I wear that now instead of the compression hose and plastic ankle brace. It is much easier to get on and off, and gives me more lateral stability and better balance. The drop foot is still evident, but mostly only when those muscles get fatigued.
Thanks to PT and trips to the chiropractor my left shoulder is getting better, too. I have more range of motion and am gaining a bit of strength in that joint. I still can't lift much weight with it, but it is getting a lot better.
My chiropractor has also fixed my back problems, that were definitely a result of being out of alignment in my left ankle. I now walk with a more fluid gait, and can walk longer distances before I get tired. I might be jogging again before too long, dare I say it!
My chiropractor is Maureen, who I mentioned a few months ago as being diagnosed with colorectal cancer. I am glad to report that she is back at work on a reduced schedule and the docs say her cancer is shrinking from the chemo. She still takes a dose of chemo on a regular basis, and has more infusions ahead, but it would appear that it's working--so far. Keep your fingers crossed for her continued improvement.
Terry and I are starting to get back to the new-normal of being cancer survivors, by doing some projects around the house that went by the way in May and June, and by doing some limited travel. We are going to Asheville NC later this month for a short getaway, and have a contracting crew ready to start a remodeling of our house front entry. Terry is gearing up for her annual Scarecrow in the Garden sculpture, and I'm making plans to put in a wood working shop in the basement. And, we recently entered our next chili cookoff. It's not until November, but it felt nice to be able to plan ahead that far.
More soon.
Mike
Sunday, July 27, 2014
Corrected date for Steve's surgery and some updates
Terry and I spoke with Steve on Friday and he corrected the date for his surgery. It will be August 26, at Stanford University Hospital. Steve had several questions for us as he looks to that date, but all in all, he and his wife seem to have a good handle on what to expect, and they both have positive attitudes and a good sense of humor. So, put a hold on those Good Vibes for a few weeks and send them to Steve and Sandy as the 26th approaches.
I continue to mend slowly but surely from my own surgery. My jaw feels great and I can eat more and more kinds of foods every week. The drop foot is getting slightly better, but still hinders me from doing some things that I'd like to. I would really like to walk more for exercise and start running a bit, but that's going to happen anytime soon. Wearing the foot brace and walking with a lopsided gait has led to some issues with my back, which also limits my mobility.
Sometime after the surgery I noticed that my left arm was weak and had a very limited range of motion. The doctors and the physical therapist are not sure if it's yet another side effect from the surgery, but it's for real and I'm doing extra PT for that issue.
So, let's take some inventory. I go in for jaw replacement surgery and expect that I'll have a huge divot out of my left calf from that. In addition to those expected outcomes, I now have a bad left foot, a bad back, and a bad left shoulder. As Roseann Rosannadanna would say on SNL, "It's always something."
But, as it has for 5+ years, it sure beats the alternative.
Mike
I continue to mend slowly but surely from my own surgery. My jaw feels great and I can eat more and more kinds of foods every week. The drop foot is getting slightly better, but still hinders me from doing some things that I'd like to. I would really like to walk more for exercise and start running a bit, but that's going to happen anytime soon. Wearing the foot brace and walking with a lopsided gait has led to some issues with my back, which also limits my mobility.
Sometime after the surgery I noticed that my left arm was weak and had a very limited range of motion. The doctors and the physical therapist are not sure if it's yet another side effect from the surgery, but it's for real and I'm doing extra PT for that issue.
So, let's take some inventory. I go in for jaw replacement surgery and expect that I'll have a huge divot out of my left calf from that. In addition to those expected outcomes, I now have a bad left foot, a bad back, and a bad left shoulder. As Roseann Rosannadanna would say on SNL, "It's always something."
But, as it has for 5+ years, it sure beats the alternative.
Mike
Monday, July 14, 2014
Green Chili Cheeseburgers are Back! Need good vibes for Steve
I passed a significant milepost today in my recovery from the jaw surgery. I was able to eat most of a green chili cheeseburger at the Grindhouse!. I can't take in a full bite so had to nibble around the edges, go very slow, and wash down every bite. But I did manage to eat about three quarters of it, along with a few onion rings--so life is good!
In other signs of progress, I am still making a shift from mostly liquid foods to mostly solid foods, but need to make sure I keep my daily calorie count up so I don't lose any more weight. The way I figure it, green chili cheeseburgers and onion rings are medicinal at this point, so no reason to slow down on them.
Since several months before my jaw surgery I have been in contact with Steve from California, who was tracking his own ORN development a little behind mine. I met Steve on the Cancer Survivor's Network and we have exchanged emails and phone calls along the way. He is scheduled for his own mandibular resecting at the end of July--and his procedure will be very much like mine. This is a call for Team Mike to send him our best Good Vibes. I can only hope that he comes through with no complications, and gets on the road to recovery faster than I did. We have promised to get together sometime in the future to have a beer, and to share...you guessed it, a green chili cheeseburger!
Mike
In other signs of progress, I am still making a shift from mostly liquid foods to mostly solid foods, but need to make sure I keep my daily calorie count up so I don't lose any more weight. The way I figure it, green chili cheeseburgers and onion rings are medicinal at this point, so no reason to slow down on them.
Since several months before my jaw surgery I have been in contact with Steve from California, who was tracking his own ORN development a little behind mine. I met Steve on the Cancer Survivor's Network and we have exchanged emails and phone calls along the way. He is scheduled for his own mandibular resecting at the end of July--and his procedure will be very much like mine. This is a call for Team Mike to send him our best Good Vibes. I can only hope that he comes through with no complications, and gets on the road to recovery faster than I did. We have promised to get together sometime in the future to have a beer, and to share...you guessed it, a green chili cheeseburger!
Mike
Wednesday, July 2, 2014
Recovery update
After a slow start on my recovery, due to complications during and after the surgery, I am glad to report that the pace has picked up a lot lately. I am expanding my food choices a little at a time, and slowing weaning myself off liquid foods like Boost. I lost a lot of weight right after the feeding tube came out, but with a better appetite and more choices lately I am gaining some of the weight back. I can drink beer (limit is 2 a day so the government doesn't classify me as a heavy drinker), but wine is still a bit too strong for my taste buds. Reuniting with Mr. Daniels is not in the foreseeable future.
The drop foot problem is slowly getting better, but still a long ways to go. My physical therapist is pleased with my progress, but I still need the brace for stability and the compression hose to keep the swelling down.
I am now able to get through most days without a nap, but don't fight it when one is needed.
My facial swelling is way down but still noticeable. I don't know how much permanent swelling I'll have, but will ask the oral surgeon about that next week.
We had a series of visitors who gave us a lot of help and were good company while we were mostly house-bound due to the IV schedule. Thanks go out to Melissa, Marie, Phantom, Janet, Dan, Peg, Jim, and Mo. We are now getting settled into a more-or-less regular routine, and enjoying our nightly Deck Time that has included some spectacular firefly displays in the last 3 weeks.
The only disappointment is that I won't be able to walk the Peachtree Road Race on July 4th. But, we'll enjoy the holiday at the Rupp Ranch Resort in the GA mountains, and then I will get to work on running the race next year.
Happy 4th of July and check back from time to time.
mike
The drop foot problem is slowly getting better, but still a long ways to go. My physical therapist is pleased with my progress, but I still need the brace for stability and the compression hose to keep the swelling down.
I am now able to get through most days without a nap, but don't fight it when one is needed.
My facial swelling is way down but still noticeable. I don't know how much permanent swelling I'll have, but will ask the oral surgeon about that next week.
We had a series of visitors who gave us a lot of help and were good company while we were mostly house-bound due to the IV schedule. Thanks go out to Melissa, Marie, Phantom, Janet, Dan, Peg, Jim, and Mo. We are now getting settled into a more-or-less regular routine, and enjoying our nightly Deck Time that has included some spectacular firefly displays in the last 3 weeks.
The only disappointment is that I won't be able to walk the Peachtree Road Race on July 4th. But, we'll enjoy the holiday at the Rupp Ranch Resort in the GA mountains, and then I will get to work on running the race next year.
Happy 4th of July and check back from time to time.
mike
Thursday, June 19, 2014
PICC line is out!
The homecare nurse came last evening and took out the PICC line for the IV meds. While the line weighed very little, it felt like a ton had been lifted from my arm--and our daily schedule. We are no longer tied to the 3 times a day routine and have already gone to bed earlier and slept a little later the last two nights.
As I said, progress is measured not by time, but by the removal of each line, drain, bandage, etc. that came home with me from the hospital. The only thing that's left now is the brace and compression hose for my left leg. I am going to PT twice a week and do some simple exercises at home daily. The PT prognosis is good to recover most or all of the movement in my left foot, but it will take several months.
So, Team Mike can take another bow for all the help and love you've sent our way, and stand down a bit from this past 7 weeks of extra Good Vibes. I'll continue to post regularly, so check in when you can--more funny and not-so-funny stories from my stay in the hospital coming soon.
mike
As I said, progress is measured not by time, but by the removal of each line, drain, bandage, etc. that came home with me from the hospital. The only thing that's left now is the brace and compression hose for my left leg. I am going to PT twice a week and do some simple exercises at home daily. The PT prognosis is good to recover most or all of the movement in my left foot, but it will take several months.
So, Team Mike can take another bow for all the help and love you've sent our way, and stand down a bit from this past 7 weeks of extra Good Vibes. I'll continue to post regularly, so check in when you can--more funny and not-so-funny stories from my stay in the hospital coming soon.
mike
Tuesday, June 17, 2014
90% Free!
A short note to say that the oral surgeon gave the OK to stop the IVs and to take out the PICC line.
So, no more 4:30 am wake ups and 10:30 pm stay-ups. The home nursing care folks will take out the line, hopefully in the next 24 hours.
mike
So, no more 4:30 am wake ups and 10:30 pm stay-ups. The home nursing care folks will take out the line, hopefully in the next 24 hours.
mike
Sunday, June 15, 2014
Looking for another "get out of jail" card--need Good Vibes
Nurse Terry has now administered over 100 rounds of antibiotics IVs to me since I got back home on May 13. That routine has consumed about 5 hours a day and kept both of us to the tight schedule of three rounds per day: 4:30 am, Noon:30, and 8:30 PM. We understand how important it has been to decrease my chances of getting another infection, but needless to say, we are way over this routine and would like our lives and sleep schedule back to normal.
Here's where you come in. We have an appointment with the oral surgeon this Tuesday, at which he will give us the OK to stop the IVs, or tell us we have another week or two of them. So we need your best Team Mike Good Vibes that Dr. Roser will smile when he looks into my mouth and gives us a "Get out of Jail" card for the IVs. I feel no signs of infection, so we are cautiously optimistic that they will take out the PICC lines and we can stop the IV drudgery after that.
I have been making good progress on eating orally. Boosts, yogurt, soups, eggs, cottage cheese, and ice cream are my staples, with an occasional "real food" thrown in--like chicken and some fruit. The challenge has been to meet my target of around 2,000 calories a day. My stomach is still shrunk, my appetite is still low, and eating is still a chore--so it takes a long time to chew and swallow food. I lost about 7 pounds right away, but have since put 1-2 back on, so am going in the right direction.
The drop foot is still there, but some progress to report. The PT says that are no signs of the nerve being severed, so it's a matter of the nerve healing itself, which will take 4-6 months. I was prescribed a compression hose to keep the swelling down and it has worked very well. I can now wear something other than my sandals, and that has stabilized my walking gait a bit and allowed me to walk longer distances.
Sadly, the Peachtree 10K on July 4th is not going to happen for me, but I have accepted that and we will spend the holiday at the Rupp River Resort in Ellijay and enjoy that a lot.
Big thanks to my oldest brother Jim, who had "Mikey duty" this past weekend. Between sucking down my good beer and wine, eating our food, and going to a Braves game, Jim did complete some important chores that have been lingering a while because I am not able to do them.
I'll update after the Tuesday appointment, so keep your fingers crossed for us.
Mike
Here's where you come in. We have an appointment with the oral surgeon this Tuesday, at which he will give us the OK to stop the IVs, or tell us we have another week or two of them. So we need your best Team Mike Good Vibes that Dr. Roser will smile when he looks into my mouth and gives us a "Get out of Jail" card for the IVs. I feel no signs of infection, so we are cautiously optimistic that they will take out the PICC lines and we can stop the IV drudgery after that.
I have been making good progress on eating orally. Boosts, yogurt, soups, eggs, cottage cheese, and ice cream are my staples, with an occasional "real food" thrown in--like chicken and some fruit. The challenge has been to meet my target of around 2,000 calories a day. My stomach is still shrunk, my appetite is still low, and eating is still a chore--so it takes a long time to chew and swallow food. I lost about 7 pounds right away, but have since put 1-2 back on, so am going in the right direction.
The drop foot is still there, but some progress to report. The PT says that are no signs of the nerve being severed, so it's a matter of the nerve healing itself, which will take 4-6 months. I was prescribed a compression hose to keep the swelling down and it has worked very well. I can now wear something other than my sandals, and that has stabilized my walking gait a bit and allowed me to walk longer distances.
Sadly, the Peachtree 10K on July 4th is not going to happen for me, but I have accepted that and we will spend the holiday at the Rupp River Resort in Ellijay and enjoy that a lot.
Big thanks to my oldest brother Jim, who had "Mikey duty" this past weekend. Between sucking down my good beer and wine, eating our food, and going to a Braves game, Jim did complete some important chores that have been lingering a while because I am not able to do them.
I'll update after the Tuesday appointment, so keep your fingers crossed for us.
Mike
Saturday, June 7, 2014
Da plane, boss, da plane
After four days in an induced coma I woke up in the ICU, with Terry bedside. I'm sure others were there, but don't remember who or when. After my head cleared a bit and the doctors and nurses stopped poking at me and left me alone, I asked Terry for the small whiteboard and pen so I could communicate with her. I had the full trach tube in, so could not talk.
One of my first questions was, "Was I on a plane?" Terry gave me a strange look. In my fentynal and dilaudid-driven dreams, I had a clear memory of something having gone very wrong during the surgery and I had been taken to another city on a med-evac plane. The only three people on the plane, other than the pilot I hope, were me (on an operating table), Dr. Roser, and Jeff Rupp--a close friend of mine. Once we landed in god-knows-where, I was taken to a holding area in the airport, and was being tended to by Shelly Linens, one of my department's sports medicine faculty!
I was absolutely convinced that I was not in Atlanta anymore, and my next question was "What went wrong?" The answer was that some things had gone wrong--the infection and a-fib, but I was assured I was still in Emory hospital and in good hands.
I was on fentynal patches during treatment in 2009 and had terrible nightmares from it--to the point that I was afraid to go to sleep. This time it was scary in a different way, but I felt safe once I knew what was going on.
So, remember, fentynal is not for kids...
mike
One of my first questions was, "Was I on a plane?" Terry gave me a strange look. In my fentynal and dilaudid-driven dreams, I had a clear memory of something having gone very wrong during the surgery and I had been taken to another city on a med-evac plane. The only three people on the plane, other than the pilot I hope, were me (on an operating table), Dr. Roser, and Jeff Rupp--a close friend of mine. Once we landed in god-knows-where, I was taken to a holding area in the airport, and was being tended to by Shelly Linens, one of my department's sports medicine faculty!
I was absolutely convinced that I was not in Atlanta anymore, and my next question was "What went wrong?" The answer was that some things had gone wrong--the infection and a-fib, but I was assured I was still in Emory hospital and in good hands.
I was on fentynal patches during treatment in 2009 and had terrible nightmares from it--to the point that I was afraid to go to sleep. This time it was scary in a different way, but I felt safe once I knew what was going on.
So, remember, fentynal is not for kids...
mike
Tuesday, June 3, 2014
More progress, one looming setback, time to eat!
We had a great visit with the oral surgeon yesterday. He is pleased with the healing inside my mouth--enough so that the nasal feeding tube was removed and the trach scar no longer needs covering. That means I can take showers now as long as I can keep the PICC line area dry. Terry and I will come up with some way to do that. After nearly 5 weeks of sponge baths, even many from Terry, it's time to get scrubbed down all the way.
The PICC lines for IVs will stay in for another two weeks. We have some relief with that, though. The visiting nurse put in extensions to the lines so I can reach them now to do that myself--giving Terry a break from that. I have my big test this noon to see if Nurse Terry approves my technique and certifies me for solo infusions.
No doubt, the biggie was the removal of the nasal tube, so I can start to eat orally. Same progression as post-treatments in 2009. I have started with Boosts, oatmeal, yogurt, and diluted Gatorade. The next step will be pureed soups. For all you smoothie fans out there--I hate them and will try my best to avoid them--so no lobbying for those things. Milkshakes make much better alternatives.
The trick is to make sure I can get enough calories and hydration to meet my daily needs, and to keep my mouth as clean as possible, to reduce the chances of infection.
Yesterday.
Mike (to Dr. Roser): What happens if I get infected again in that area?
Roser: We'll put in another nasal feeding tube.
Mike: You'll have to catch me first.
Roser (looking at my braced left leg): You won't be hard to catch--you'll be running in a circle.
The left leg remains the wild card in all of this. If the peroneal nerve is to come back at all, it will take a long time. That greatly reduces my chances of walking the Peachtree 10K on July 4th, to the point of needing a miracle, so you Deadheads out there know which song I need your Good Vibes to go with.
I asked Terry to take pictures along the way, especially when I came out of surgery and was in the induced coma. I am going to show you a photo she took about 24 hours after surgery, and one from yesterday after the nasal tube came out. I will warn you that the first picture is pretty gruesome--then again maybe the second one is too:
You can click on a picture to make it larger. What they show best is how far I've come since May 2, with the help of dozens of doctors and nurses, friends, family, Team Mike, and most of all Nurse Terry.
The next milestone will be the removal of the PICC lines (tucked under the sleeve on my right arm in the lower photo). That will mean the doctor thinks I am safe from further infection, and it will rid Terry and I from the three infusions every day. In two weeks, hopefully.
Special thanks go to my brother Dan and his partner Peg for their visit last weekend. They were great company for us and helped with food prep so we could host my sister Marie and her family for a smoked ribs and wings dinner on Saturday--my first cooking since late April. Well, Peg worked and Dan helped by staying out of the way. We went to the ATL Botanical Garden on Saturday with them--a great outing, but tiring for me by the end of it.
Now that our spirits are a bit brighter and I have more energy, I'll post soon some of the stories (some funny, others not so much) and more pictures from the ICU, hospital room, and home care.
Keep up the Good Vibes--still a very long ways to go.
Mike
The PICC lines for IVs will stay in for another two weeks. We have some relief with that, though. The visiting nurse put in extensions to the lines so I can reach them now to do that myself--giving Terry a break from that. I have my big test this noon to see if Nurse Terry approves my technique and certifies me for solo infusions.
No doubt, the biggie was the removal of the nasal tube, so I can start to eat orally. Same progression as post-treatments in 2009. I have started with Boosts, oatmeal, yogurt, and diluted Gatorade. The next step will be pureed soups. For all you smoothie fans out there--I hate them and will try my best to avoid them--so no lobbying for those things. Milkshakes make much better alternatives.
The trick is to make sure I can get enough calories and hydration to meet my daily needs, and to keep my mouth as clean as possible, to reduce the chances of infection.
Yesterday.
Mike (to Dr. Roser): What happens if I get infected again in that area?
Roser: We'll put in another nasal feeding tube.
Mike: You'll have to catch me first.
Roser (looking at my braced left leg): You won't be hard to catch--you'll be running in a circle.
The left leg remains the wild card in all of this. If the peroneal nerve is to come back at all, it will take a long time. That greatly reduces my chances of walking the Peachtree 10K on July 4th, to the point of needing a miracle, so you Deadheads out there know which song I need your Good Vibes to go with.
I asked Terry to take pictures along the way, especially when I came out of surgery and was in the induced coma. I am going to show you a photo she took about 24 hours after surgery, and one from yesterday after the nasal tube came out. I will warn you that the first picture is pretty gruesome--then again maybe the second one is too:
The next milestone will be the removal of the PICC lines (tucked under the sleeve on my right arm in the lower photo). That will mean the doctor thinks I am safe from further infection, and it will rid Terry and I from the three infusions every day. In two weeks, hopefully.
Special thanks go to my brother Dan and his partner Peg for their visit last weekend. They were great company for us and helped with food prep so we could host my sister Marie and her family for a smoked ribs and wings dinner on Saturday--my first cooking since late April. Well, Peg worked and Dan helped by staying out of the way. We went to the ATL Botanical Garden on Saturday with them--a great outing, but tiring for me by the end of it.
Now that our spirits are a bit brighter and I have more energy, I'll post soon some of the stories (some funny, others not so much) and more pictures from the ICU, hospital room, and home care.
Keep up the Good Vibes--still a very long ways to go.
Mike
Wednesday, May 28, 2014
Charting progress with a different measure
I came home from the hospital looking like a human pincushion and quilt, with tubes and other inserts and bandages in seven places on my body. I've come to realize that my progress should not be charted on a time line--it should be charted by when each tube/insert/bandage comes out or off. So, here's the scorecard:
My trach hole has healed on the inside, and is about 90% healed on the outside. So, I've gone from having a tube to having a small bandage there. I can talk clearly, but not for long without getting voice fatigue.
The skin graft site bandage is off for good and that place is healing nicely.
The donor site on my left leg is healing nicely, but still needs a new bandage daily--no estimate on how long that will take to heal fully.
Both surgical drains have been taken out, so I have more mobility, and a little less work for Nurse Terry each day.
The nasal feeding tube is still in place and has caused some minor emergencies. The oral surgeon said yesterday that he's "hopeful" it can come out this Monday.
The PICC line for IVs is still in, for at least another two weeks.
So, three things are out, two places are healing well, and two tubes left in for at least a week. Each time a tube/insert comes out or a site heals it takes a little less out of the long daily routine and gives me more mobility.
Oh, and I got the stitches out of my jaw area. The plastics docs did a nice job, and the scar will hardly be noticeable. And, we think they tightened up my age-sagging under-chin area a bit.
It appears that a nerve in my left foot got damaged during the operation and I have no dorsi-flexion there (raising the toes up). I can walk around the house, but it has limited my long-distance walking. It's been an adventure to find a brace to help that area, but we think we have a solution. If that works, I can get on track for my Peachtree 10K training.
Special thanks to Dr. Jim and Janet for their visit this past weekend. Jim was Doc-on-the-spot during a minor emergency with my feeding tube and helped Terry with a temp fix that kept me from going to the ER that evening. Jim and Janet were great company and provided Terry with several take-out meals that reduced that load for her. Jim gave me a "Boston Strong" cap that I took to my appt with the oral surgeon yesterday. Dr. Roser is from Boston and got a big kick out of seeing the cap.
So, progress is now being measured with the removal of tubes and the healing of other sites. By all's opinion, I am making great progress and have my fingers crossed that the feeding tube can come out on Monday--so please send good vibes for that.
Mike
My trach hole has healed on the inside, and is about 90% healed on the outside. So, I've gone from having a tube to having a small bandage there. I can talk clearly, but not for long without getting voice fatigue.
The skin graft site bandage is off for good and that place is healing nicely.
The donor site on my left leg is healing nicely, but still needs a new bandage daily--no estimate on how long that will take to heal fully.
Both surgical drains have been taken out, so I have more mobility, and a little less work for Nurse Terry each day.
The nasal feeding tube is still in place and has caused some minor emergencies. The oral surgeon said yesterday that he's "hopeful" it can come out this Monday.
The PICC line for IVs is still in, for at least another two weeks.
So, three things are out, two places are healing well, and two tubes left in for at least a week. Each time a tube/insert comes out or a site heals it takes a little less out of the long daily routine and gives me more mobility.
Oh, and I got the stitches out of my jaw area. The plastics docs did a nice job, and the scar will hardly be noticeable. And, we think they tightened up my age-sagging under-chin area a bit.
It appears that a nerve in my left foot got damaged during the operation and I have no dorsi-flexion there (raising the toes up). I can walk around the house, but it has limited my long-distance walking. It's been an adventure to find a brace to help that area, but we think we have a solution. If that works, I can get on track for my Peachtree 10K training.
Special thanks to Dr. Jim and Janet for their visit this past weekend. Jim was Doc-on-the-spot during a minor emergency with my feeding tube and helped Terry with a temp fix that kept me from going to the ER that evening. Jim and Janet were great company and provided Terry with several take-out meals that reduced that load for her. Jim gave me a "Boston Strong" cap that I took to my appt with the oral surgeon yesterday. Dr. Roser is from Boston and got a big kick out of seeing the cap.
So, progress is now being measured with the removal of tubes and the healing of other sites. By all's opinion, I am making great progress and have my fingers crossed that the feeding tube can come out on Monday--so please send good vibes for that.
Mike
Monday, May 19, 2014
Running the marathon, off to a good start, and an invitation
As Terry was told by the lead surgeon, this will be more like a marathon than a sprint, so we are preparing for a very long road to a full recovery--much of the extra time and effort due to the infection that surfaced during the surgery.
We met with Dr. Roser today and he is pleased with the healing progress in my mouth. We see him again a week from tomorrow. If all is still going well, the nasal feeding tube can come out and I can start eating orally. Still a long ways from enjoying green chili cheeseburgers, but it would be a start.
The home care schedule is brutal on me and Terry. Just the IV antibiotics take 9 hours a day--three, 3-hour sets, starting at 4:30 am and ending around 11 PM. In between are meds, feedings, cleanings, etc. It is consuming us right now but we hope to get some relief by having an extra IV line available tomorrow--that will cut the 9 hours down to about 5--a huge difference.
I am out of the walking boot and using adjustable sandals for my swollen left foot. It is swollen from that calf being the donor site for the new jaw tissue. Once that foot and ankle gets down to a size that can fit my running shoes, I'll start getting ready to walk the Peachtree 10K. Right now my walking distance is limited to short walks around the cul-de-sac, with no inclines allowed.
Two GSU colleagues and my three doctoral students have offered to walk the Peachtree with me on July 4th. Consider this an invitation to any locals to join us at the back of the long pack that day. It will be strictly walking--no way I'll be able to run it by then. So, let me know if you want to join us--I'll buy the "coldest beer ever" after the walk.
In the meantime, keep the Good Vibes going that progress keeps getting made, even if much slower than first estimated.
Mike
We met with Dr. Roser today and he is pleased with the healing progress in my mouth. We see him again a week from tomorrow. If all is still going well, the nasal feeding tube can come out and I can start eating orally. Still a long ways from enjoying green chili cheeseburgers, but it would be a start.
The home care schedule is brutal on me and Terry. Just the IV antibiotics take 9 hours a day--three, 3-hour sets, starting at 4:30 am and ending around 11 PM. In between are meds, feedings, cleanings, etc. It is consuming us right now but we hope to get some relief by having an extra IV line available tomorrow--that will cut the 9 hours down to about 5--a huge difference.
I am out of the walking boot and using adjustable sandals for my swollen left foot. It is swollen from that calf being the donor site for the new jaw tissue. Once that foot and ankle gets down to a size that can fit my running shoes, I'll start getting ready to walk the Peachtree 10K. Right now my walking distance is limited to short walks around the cul-de-sac, with no inclines allowed.
Two GSU colleagues and my three doctoral students have offered to walk the Peachtree with me on July 4th. Consider this an invitation to any locals to join us at the back of the long pack that day. It will be strictly walking--no way I'll be able to run it by then. So, let me know if you want to join us--I'll buy the "coldest beer ever" after the walk.
In the meantime, keep the Good Vibes going that progress keeps getting made, even if much slower than first estimated.
Mike
Thursday, May 15, 2014
In Nurse Terry's hands at home
I've been home for little more than 24 hours, but Emory Hospital seems like a lifetime ago. Once we were discharged we got a fast and confusing education in home care services, but have sorted that out and have started a routine to keep my antibiotics, nutrition, and hygiene levels where they need to be for a while.
Here's my current status. I am taking massive doses of antibiotics to fend off any new infections, getting my food through a tube, dressing the leg wound that was the donor site for the new jaw bone, and watching the progress of my trach stoma healing. Once that heals I'll have more options for daily hygiene. All of this is under the loving and expert care of Nurse Terry, who keeps us on schedule while trying to work her own schedule around my significant needs in the next 1-2 weeks.
So, here's what I have pieced together so far. The structural part of the resection seems to have gone well--the surgical team is pleased with the early evaluation of their work. The unanticipated infection has resulted in much of the extra work and concern at this time. I should be eating liquid food orally by now, but they are trying to keep my mouth as clean as possible, thus the nasal feeding tube. The first tube was inserted during the operation, but got moved somehow and it took two tries to get it right again--probably due my kicking and pain during the insertions. Easily the worst part of this that I was awake for.
I have about a 6-inch divot of flesh and bone taken from my left calf to serve as the donor tissue for the new jaw. That sucker hurts, and it's stiff. I have a big walking boot that I use to gain some stability when walking.
The crown jewel right now is a big pink and shadow-bearded face with about 200 stitches in it, and is unevenly swollen--think Herman Munster after after a bad fall. I can feel and see the swelling go down ever so slightly each day, but still a very long ways to go until they can start the next step of dental work.
A lot of things can still bring SFL back into play, so keep up the Good Vibes.
I have some pictures and stories from the hospital that I will post soon--right now I need to get a tummy full of some brown liquid I am calling food for now.
Mike
Here's my current status. I am taking massive doses of antibiotics to fend off any new infections, getting my food through a tube, dressing the leg wound that was the donor site for the new jaw bone, and watching the progress of my trach stoma healing. Once that heals I'll have more options for daily hygiene. All of this is under the loving and expert care of Nurse Terry, who keeps us on schedule while trying to work her own schedule around my significant needs in the next 1-2 weeks.
So, here's what I have pieced together so far. The structural part of the resection seems to have gone well--the surgical team is pleased with the early evaluation of their work. The unanticipated infection has resulted in much of the extra work and concern at this time. I should be eating liquid food orally by now, but they are trying to keep my mouth as clean as possible, thus the nasal feeding tube. The first tube was inserted during the operation, but got moved somehow and it took two tries to get it right again--probably due my kicking and pain during the insertions. Easily the worst part of this that I was awake for.
I have about a 6-inch divot of flesh and bone taken from my left calf to serve as the donor tissue for the new jaw. That sucker hurts, and it's stiff. I have a big walking boot that I use to gain some stability when walking.
The crown jewel right now is a big pink and shadow-bearded face with about 200 stitches in it, and is unevenly swollen--think Herman Munster after after a bad fall. I can feel and see the swelling go down ever so slightly each day, but still a very long ways to go until they can start the next step of dental work.
A lot of things can still bring SFL back into play, so keep up the Good Vibes.
I have some pictures and stories from the hospital that I will post soon--right now I need to get a tummy full of some brown liquid I am calling food for now.
Mike
Sunday, May 11, 2014
From "the trach in 910"
Well, I have seen hell from its brink, and it ain't a place I want to see again. Here's the scorecard: a 12-hour surgery, followed by 3 days in an induced coma, then 3 more days in ICU due to a bad infection, and then 4 days on a post surgical floor and it looks a discharge in 2 or 3 more days. It has been hell in so many ways that I can't even count them. The low lights have included, well, being in a hospital for nearly two weeks, oxycontin withdrawal in ICU, sometimes bad nursing care (but mostly excellent), having my head and face looking like a pink bowling ball with baseball stitches around it, and having to live the life of a hospital patient with no privacy or dignity available.
Because I had a trach tube installed as part of the surgery, I could not talk for several days, so when I pressed the call button I couldn't respond to "How can I help you?" One nurse finally figured that out and told the call nurse that if no one responds on the other end, "That's the trach in room 910 so be sure to get me right away". So, that's how I'm known to the nurses and floor staff now--the trach in 910.
But there are many highlights as we'll. Tops among those are the great medical-surgical care I've received at Emory, the iron will of Terry to carry me through this, and some special help from two of my sisters who have helped us in so many ways. Thanks, Melissa and Mer.
I am writing on an iPad so it's a bit difficult to type efficiently and will post more soon. I still have a long way to go before I'm anywhere near a full recovery, but the first corner has been turned. I will leave the hospital with a feeding tube to my nose and maybe some other tubes still in me, but being able to go home and enjoy some deck time with Terry (she'll have white wine, I'll have a shot of some brown liquid up my nose) has now become the first stage towards a near-normal life as a cancer and ORN survivor.
As always thanks to Team Mike for the good vibes to get me to to this point. You pulled me through some pretty scary stuff in the OR and the ICU.
The trach in 910
Because I had a trach tube installed as part of the surgery, I could not talk for several days, so when I pressed the call button I couldn't respond to "How can I help you?" One nurse finally figured that out and told the call nurse that if no one responds on the other end, "That's the trach in room 910 so be sure to get me right away". So, that's how I'm known to the nurses and floor staff now--the trach in 910.
But there are many highlights as we'll. Tops among those are the great medical-surgical care I've received at Emory, the iron will of Terry to carry me through this, and some special help from two of my sisters who have helped us in so many ways. Thanks, Melissa and Mer.
I am writing on an iPad so it's a bit difficult to type efficiently and will post more soon. I still have a long way to go before I'm anywhere near a full recovery, but the first corner has been turned. I will leave the hospital with a feeding tube to my nose and maybe some other tubes still in me, but being able to go home and enjoy some deck time with Terry (she'll have white wine, I'll have a shot of some brown liquid up my nose) has now become the first stage towards a near-normal life as a cancer and ORN survivor.
As always thanks to Team Mike for the good vibes to get me to to this point. You pulled me through some pretty scary stuff in the OR and the ICU.
The trach in 910
Saturday, May 10, 2014
Day 10
It's day 10 of the marathon and Mike has been improving steadily everyday. Here are the highlights for the cancer blog junkies (I'll post more later).
His ability to write legibly on the white board improved with practice and as the sedation drugs left his body to the point I was starting to regret giving him the white board to begin with.
He can talk when the trach is plugged and he is walking with a walker and assistance so we are hoping that he is released from the hospital no later than Monday.
I'll give more details later today.
The good vibes and prayers worked!
Thanks,
Terry
His ability to write legibly on the white board improved with practice and as the sedation drugs left his body to the point I was starting to regret giving him the white board to begin with.
He can talk when the trach is plugged and he is walking with a walker and assistance so we are hoping that he is released from the hospital no later than Monday.
I'll give more details later today.
The good vibes and prayers worked!
Thanks,
Terry
Sunday, May 4, 2014
Get ready for a marathon...
I've been pretty busy, so I'm just now getting to posting a blog. Briefly, Mike's surgery lasted 12 hours Thursday. Immediately following surgery he was admitted to the ICU where he remains 4 days later. The surgery itself went well, with not surprises other than the fact the surgeons discovered that his jaw was already broken. That would explain the intense and sudden pain at the start of the New Zealand trip. For the past three days they've kept him sedated to give the graft a chance to heal. He's having a couple of complications, including infection that's going to keep him in the ICU a little longer.
After Marie and I left the hospital last night (May 3) at 6:30, Mike went into A-fib and stayed that way until sometime around 5:30 this morning when he returned to normal sinus rhythm. When I got to the hospital at 6:15 he was still sedated, had good coloring and was resting comfortably. As soon as the ICU critical care docs, maxofacial docs and plastics (their term, not mine for plastic surgery) showed up around 6:45 and started poking around in his mouth, he and his assigned nurse got very agitated, BP & HR went up (hers too), breathing became labored (she was huffing and puffing) and he looked very uncomfortable. She was livid. He still has temp that is spiking up to 104 so they are changing or adding to current antibiotics. All sorts of cultures have been taken the last couple of days when the fever started so those results should be in soon. There was a little bit of drainage anterior side of the flap so they took a culture from that area this morning. A little too soon for an infection to show up there, but they are still taking precautions. Once everyone left the room, the nurse and the respiratory therapist were able to make some adjustments to the ventilator and some of the sedatives so he was calm when I left to meet Melissa at home.
The plan for today is to slowly start to wake him up. Visitors are allowed, but are going to be asked not to interact with him so that he remains calm. I think it's more him wanting to talk and breathe on his own that upsets him. (Can you picture mike being quiet?)
Whenever possible I try to remind them that he is a real person with goals and dreams so when Dr. Roser told me this morning that this was going to be a marathon, I told him and the "doogie howser" team in the room with him that Mike's running shoes for the Peachtree Road Race were delivered to the house yesterday. Everyone starting grinning and chuckling because they remembered during the post-op visit with me that I had told them that he was planning on walking the Peachtree this year. At least they know they've got a real fighter on their hands.
Team Mike - put on your running shoes and rev up the good vibes, wishes and prayers.
Please feel free to share with others.
Terry
After Marie and I left the hospital last night (May 3) at 6:30, Mike went into A-fib and stayed that way until sometime around 5:30 this morning when he returned to normal sinus rhythm. When I got to the hospital at 6:15 he was still sedated, had good coloring and was resting comfortably. As soon as the ICU critical care docs, maxofacial docs and plastics (their term, not mine for plastic surgery) showed up around 6:45 and started poking around in his mouth, he and his assigned nurse got very agitated, BP & HR went up (hers too), breathing became labored (she was huffing and puffing) and he looked very uncomfortable. She was livid. He still has temp that is spiking up to 104 so they are changing or adding to current antibiotics. All sorts of cultures have been taken the last couple of days when the fever started so those results should be in soon. There was a little bit of drainage anterior side of the flap so they took a culture from that area this morning. A little too soon for an infection to show up there, but they are still taking precautions. Once everyone left the room, the nurse and the respiratory therapist were able to make some adjustments to the ventilator and some of the sedatives so he was calm when I left to meet Melissa at home.
The plan for today is to slowly start to wake him up. Visitors are allowed, but are going to be asked not to interact with him so that he remains calm. I think it's more him wanting to talk and breathe on his own that upsets him. (Can you picture mike being quiet?)
Whenever possible I try to remind them that he is a real person with goals and dreams so when Dr. Roser told me this morning that this was going to be a marathon, I told him and the "doogie howser" team in the room with him that Mike's running shoes for the Peachtree Road Race were delivered to the house yesterday. Everyone starting grinning and chuckling because they remembered during the post-op visit with me that I had told them that he was planning on walking the Peachtree this year. At least they know they've got a real fighter on their hands.
Team Mike - put on your running shoes and rev up the good vibes, wishes and prayers.
Please feel free to share with others.
Terry
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