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
I was diagnosed with a rare form of cancer at the base of my tongue in February of 2009, at the age of 57. My wife, Terry, and I use this blog to share that experience with our families, friends, and others who may be in this same situation, either as a cancer patient themselves or as the primary care-giver. We invite anyone interested in our story to read the blog and to reply with their own stories and experiences in fighting this terrible disease.
Saturday, March 7, 2015
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
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