Yesterday, December 23, my oral surgeon's office gave us an early Christmas present--a tentative (but probable) date for my jaw resection. May 1 will be the big day. That will give us three weeks after returning from NZ to get things in order and for me to gorge on my favorite (soft, flat, easy-to-swallow) foods before I go back to my feeding tube diet for several weeks. Terry is already practicing her pouring skills in anticipation.
Even though we have been gearing up mentally for this gig for several weeks, the news of a firm date hit us both like a ton of bricks. I am making no bones (pun intended) about it--it scares the shit out of me and am glad that it is not happening right away. I don't think I am strong enough physically or mentally right now to go through this surgery and the long recovery period. But when the bell rings on May 1, I'll have done whatever it will take to be ready (Dear Sister Everista [my third grade teacher-nun], Is that a correct sentence?). Living in NZ leading up to the surgery will allow me to get my head and body right to take this on the same way I did my cancer treatments--with raw stubbornness, a high tolerance for pain, Eastern European genes, a sense of humor, and the love and support of Terry and Team Mike. Oh yeah--and lots of good meds ;)
Ironically, this is not the worst Christmas present we've had in recent years. Hearing this news led Terry and I to rewind to December 24, 2008--the date we heard the news that my biopsy was positive for MEC cancer. Yes, five years today we got the word and saw the radiation oncologist that same afternoon. Of course, that started everything in motion that has lead up to the May 1 surgery, once again verifying what I've said all along about chemo+radiation--they are "The gifts that keep on giving."
Regardless of this bit of news, we are looking forward to a nice Christmas, a Happy New Year, and a wonderful adventure in New Zealand. In the meantime, Team Mike can take a break until you are called back into action on May 1, 2014. I will keep posting here in the meantime, and also to my NZ blog once we arrive there. I'll let you know when that starts.
Mike
Tuesday, December 24, 2013
Wednesday, December 18, 2013
Why me?
About two weeks ago I had an appointment with my radiation oncologist who told Terry and I that he considers my cancer to be cured. I have had "clean" scans for the last 4+ years and he sees no signs of the cancer I was diagnosed with in early 2009. With my type of cancer, the "cure window" is 5 years--if the cancer does not recur in that time, the status changes from "patient" to "cured." We celebrated that night but wanted to get confirmation from the lead oncologist before we would totally believe what we were hearing. That confirmation came today--Dr. Henderson agrees that enough of the 5-year window has gone by with no signs of recurrence, and used the other C-word with me himself, c-u-r-e-d!
But other news reminded me that cancer can be a cruel disease in so many other ways. Terry got an email today from her friend Joy Hartsfield (currently being treated for cancer herself) that her brother Charlie passed away last night from head/neck cancer--similar to mine. He was diagnosed only about a year ago, and never responded to essentially the same treatments I went through. One year after my diagnosis I was on the road to being cured. One year after Charlie's diagnosis, he was dead.
A lot of cancer patients ask "Why me?" when they are first diagnosed and while they are struggling with the debilitating treatments of surgery, radiation and chemotherapy. I never asked "Why me?" at that stage--I just chalked it up to SFL (the 'L' is for luck--the 'S' and 'F' will come to you in a moment). I was HPV- and a non-smoker so there was no direct link between lifestyle and other known causes of my cancer. I was glad about that, because unlike lung cancer patients who have been life-long smokers, I didn't have the added burden of guilt and second-guessing to wear on me during treatments. SFL happens, so I accepted that and turned all of my energy to getting better.
Since my diagnosis, several friends and people like Charlie who I knew through others were not able to survive their cancers--even after fighting the Prairie Dogs as hard as I did. They followed their doctors' directions, had loving caretakers and lots of support from their own versions of Team Mike, but didn't make it through. So, why did I survive and they didn't--why me, and not them? Maybe it's just the opposite of SFL, maybe it's in my DNA--who the hell knows? Certainly not me.
I didn't know Charlie personally, but plan to attend his services this weekend. Part of my reason for being there is to give Joy and her family some support. Beyond that, I really don't know, but maybe by going there I can get a little closer to an answer for "Why me?"
Even without an answer to that question, I do know that I have been given a second life as a cancer survivor, even if that life comes with a some serious side effects that will always be there to manage. As a survivor I have a responsibility to help those who are on the same path I was five years ago. I do that in a small way by offering advice and comfort to current patients and their caretakers on the Cancer Survivors Network and to people I know personally. For a moment I thought that was the answer to "Why me?" but then wouldn't any cancer victim offer to do the same, had they survived? I'd like to think they would, which then takes me back to wondering why I have survived and they didn't.
My cosmic pondering aside, I am certain of one thing. Without the love and support of Terry and Team Mike, I would not have been there today to hear my doctor say the new C-word to me! For that I am ever-grateful.
Please be safe and happy this Holiday Season.
Mike
But other news reminded me that cancer can be a cruel disease in so many other ways. Terry got an email today from her friend Joy Hartsfield (currently being treated for cancer herself) that her brother Charlie passed away last night from head/neck cancer--similar to mine. He was diagnosed only about a year ago, and never responded to essentially the same treatments I went through. One year after my diagnosis I was on the road to being cured. One year after Charlie's diagnosis, he was dead.
A lot of cancer patients ask "Why me?" when they are first diagnosed and while they are struggling with the debilitating treatments of surgery, radiation and chemotherapy. I never asked "Why me?" at that stage--I just chalked it up to SFL (the 'L' is for luck--the 'S' and 'F' will come to you in a moment). I was HPV- and a non-smoker so there was no direct link between lifestyle and other known causes of my cancer. I was glad about that, because unlike lung cancer patients who have been life-long smokers, I didn't have the added burden of guilt and second-guessing to wear on me during treatments. SFL happens, so I accepted that and turned all of my energy to getting better.
Since my diagnosis, several friends and people like Charlie who I knew through others were not able to survive their cancers--even after fighting the Prairie Dogs as hard as I did. They followed their doctors' directions, had loving caretakers and lots of support from their own versions of Team Mike, but didn't make it through. So, why did I survive and they didn't--why me, and not them? Maybe it's just the opposite of SFL, maybe it's in my DNA--who the hell knows? Certainly not me.
I didn't know Charlie personally, but plan to attend his services this weekend. Part of my reason for being there is to give Joy and her family some support. Beyond that, I really don't know, but maybe by going there I can get a little closer to an answer for "Why me?"
Even without an answer to that question, I do know that I have been given a second life as a cancer survivor, even if that life comes with a some serious side effects that will always be there to manage. As a survivor I have a responsibility to help those who are on the same path I was five years ago. I do that in a small way by offering advice and comfort to current patients and their caretakers on the Cancer Survivors Network and to people I know personally. For a moment I thought that was the answer to "Why me?" but then wouldn't any cancer victim offer to do the same, had they survived? I'd like to think they would, which then takes me back to wondering why I have survived and they didn't.
My cosmic pondering aside, I am certain of one thing. Without the love and support of Terry and Team Mike, I would not have been there today to hear my doctor say the new C-word to me! For that I am ever-grateful.
Please be safe and happy this Holiday Season.
Mike
Saturday, November 9, 2013
Checking in
It's been over a month since my last update, so I thought I'd let Randy Varley and y'all read some news for a change--some about cancer, but mostly about good things in our lives lately.
The cancer beast has struck our street again. This time it's our neighbor Darryl who has been diagnosed with colon cancer and had a section of his colon removed two weeks ago. His prognosis is good, but he will have several months of low-dose chemo once he gets stronger from his surgery.
Joy Hartsfield continues to recover from her tongue cancer surgery and is back at work with limited hours. So far there is not talk of chemo or radiation, so please send her some good vibes to let her not have to go through that shit. She is a very small woman, and those treatments would be very difficult on her.
My left jaw is still swollen, so there is still a fragment there--but no sign that it's coming out any time soon. I have made some changes in my diet to eat only soft foods that require no hard chewing. Lots of soups, cheesesteaks and ice cream. Eating is a real chore, so I have cut down the volume of my food intake quite a bit, and have lost some weight. The cheesesteaks and ice cream are there to help my calorie count--that's my story and I'm sticking to it...
Every year Terry enters the Atlanta Botanical Garden's Scarecrow contest. She placed second this year in the professional competition with a huge scarecrow shaped like a two-handled corkscrew, and covered with over a thousand corks. She had another entry, also covered entirely with corks, but that didn't place. She got corks from friends, family, and a few restaurants--and more than a few right from home.
Demonstrating her versatile talents, last weekend she placed third in a chili cooking contest in Cabbagetown, a funky neighborhood in ATL. While she was on stage getting her award and I was in front of the stage taking her picture with a guy in a pink bunny suit and a woman in a green cabbage outfit (that's the back of my head in the top picture), they announced the first place winner--me! I was so excited for Terry that I almost didn't hear my name being called. There were 99 cooks in the contest, and it was judged by professional chefs from ATL restaurants, so this is a huge accomplishment for both of us to be in the top three.
The point of all this is that cancer can invade one's life in many ways, as a patient, a caretaker, a friend, and as a neighbor--but you need to keep fighting the Prarie Dogs every day, whether they are in your body or that of someone around you. If you fight hard enough and long enough, you can increase your chances of kicking their asses, and getting back to a near-normal life...well as normal as it can be with two "corkscrows" in your back yard and getting your pictures taken in a place called Cabbagetown next to a guy in a pink bunny suit and a women imitating a head of cabbage.
Mike
The cancer beast has struck our street again. This time it's our neighbor Darryl who has been diagnosed with colon cancer and had a section of his colon removed two weeks ago. His prognosis is good, but he will have several months of low-dose chemo once he gets stronger from his surgery.
Joy Hartsfield continues to recover from her tongue cancer surgery and is back at work with limited hours. So far there is not talk of chemo or radiation, so please send her some good vibes to let her not have to go through that shit. She is a very small woman, and those treatments would be very difficult on her.
My left jaw is still swollen, so there is still a fragment there--but no sign that it's coming out any time soon. I have made some changes in my diet to eat only soft foods that require no hard chewing. Lots of soups, cheesesteaks and ice cream. Eating is a real chore, so I have cut down the volume of my food intake quite a bit, and have lost some weight. The cheesesteaks and ice cream are there to help my calorie count--that's my story and I'm sticking to it...
Every year Terry enters the Atlanta Botanical Garden's Scarecrow contest. She placed second this year in the professional competition with a huge scarecrow shaped like a two-handled corkscrew, and covered with over a thousand corks. She had another entry, also covered entirely with corks, but that didn't place. She got corks from friends, family, and a few restaurants--and more than a few right from home.
Demonstrating her versatile talents, last weekend she placed third in a chili cooking contest in Cabbagetown, a funky neighborhood in ATL. While she was on stage getting her award and I was in front of the stage taking her picture with a guy in a pink bunny suit and a woman in a green cabbage outfit (that's the back of my head in the top picture), they announced the first place winner--me! I was so excited for Terry that I almost didn't hear my name being called. There were 99 cooks in the contest, and it was judged by professional chefs from ATL restaurants, so this is a huge accomplishment for both of us to be in the top three.
The point of all this is that cancer can invade one's life in many ways, as a patient, a caretaker, a friend, and as a neighbor--but you need to keep fighting the Prarie Dogs every day, whether they are in your body or that of someone around you. If you fight hard enough and long enough, you can increase your chances of kicking their asses, and getting back to a near-normal life...well as normal as it can be with two "corkscrows" in your back yard and getting your pictures taken in a place called Cabbagetown next to a guy in a pink bunny suit and a women imitating a head of cabbage.
Mike
Sunday, September 29, 2013
A few updates
This has been a busy week for some of the folks we've been following and reporting to you on. The memorial services for Winnie Brown was yesterday. It was nice event--she would have approved, no doubt. That was followed by a reception at George's house for family and close friends. Another nice event, but it was obvious that Winnie was badly missed--as she will be for any future gatherings.
Terry got word that Joy Hartsfield's surgery went well and that she is feeling the expected amount of pain--a lot. The surgeon had clear margins to work with, so hopefully this will be the extent of her treatment. Please send her some good vibes for a fast recovery.
As for me, the oral surgeon's office is trying to coordinate the schedules of the several doctors who will be part of the team to do the jaw resecting. They are looking at April 21 or 28 right now. My pain level has inched up a bit, meaning that the current fragment is moving its way to the surface, but there is no way to predict how long that will take. I am trying to find a balance between the amount of pain meds I take and the amount of pain I can tolerate to get me through the day. In order to be pain-free I would have to take a lot of the meds, but that makes me very tired.
On the bright side, I had a follow-up procedure to my cataract replacements of about a year ago. They did a simple laser procedure to clean up some of the old lens that was left in to help the artificial lens stay in place. They did the right eye on Friday. The left eye will be done early in November. I have already noticed a big improvement, so am looking forward to getting the left eye done.
Mike
Terry got word that Joy Hartsfield's surgery went well and that she is feeling the expected amount of pain--a lot. The surgeon had clear margins to work with, so hopefully this will be the extent of her treatment. Please send her some good vibes for a fast recovery.
As for me, the oral surgeon's office is trying to coordinate the schedules of the several doctors who will be part of the team to do the jaw resecting. They are looking at April 21 or 28 right now. My pain level has inched up a bit, meaning that the current fragment is moving its way to the surface, but there is no way to predict how long that will take. I am trying to find a balance between the amount of pain meds I take and the amount of pain I can tolerate to get me through the day. In order to be pain-free I would have to take a lot of the meds, but that makes me very tired.
On the bright side, I had a follow-up procedure to my cataract replacements of about a year ago. They did a simple laser procedure to clean up some of the old lens that was left in to help the artificial lens stay in place. They did the right eye on Friday. The left eye will be done early in November. I have already noticed a big improvement, so am looking forward to getting the left eye done.
Mike
Sunday, September 22, 2013
Replying to comments
Terry asked me recently if I saw and replied to the comments sent to me by some of the blog's readers. To be honest, I thought that function of the blog site didn't work, and I stopped looking for them a long time ago.
Imagine my surprise when I did go there and saw so many supportive and complementary comments. Please accept my apologies for missing them, and then not responding to them. I will make sure to check for comments whenever I post a new blog entry.
Some of you have asked for my personal email address. I am happy to provide that, if you can just give me a short reason for wanting it--so I can sort out those who really want to communicate from those would-be cyber stalkers, phishers, debt collectors, and ex-wives.
Mike
Imagine my surprise when I did go there and saw so many supportive and complementary comments. Please accept my apologies for missing them, and then not responding to them. I will make sure to check for comments whenever I post a new blog entry.
Some of you have asked for my personal email address. I am happy to provide that, if you can just give me a short reason for wanting it--so I can sort out those who really want to communicate from those would-be cyber stalkers, phishers, debt collectors, and ex-wives.
Mike
Rest in Peace, Winnie
On our way home from the airport after a conference in Colorado Springs, we got a call that Winnie Brown had passed away earlier this morning. She was one day past her 78th birthday. Winnie died from an extremely rare type of cancer that started in sweat glands on her face and spread via her nerve tissue. She was told a few months ago that there was no cure for her cancer. She managed to hold steady for a while but then started to go downhill fast a few weeks ago. Terry saw her five days ago, just as Winnie was starting 24/7 hospice care at home. Terry's estimate that it was a matter of hours or a few days proved to be very accurate.
We went over to see Winnie's husband George, their three daughters (Deb, Gay and Cherie) and Jeff (Deb's husband) and spent a little time with them as the reality of it all was sinking in--even knowing for a while that it would be sooner, not later. To varying degrees, they were coping as best as they could while slowly turning to the many decisions and plans that need to get done in the next few days and beyond.
Raising her daughters and then being a major part of their adult lives was Winnie's raison d'etre. She and George doted on them, making them laugh and cringe in equal measures in the years I have known the Brown family. Terry was a friend of the Brown family for many years before we entered that circle as a couple. One of the highlights every year was being invited to the Brown's a few days before Christmas for a gathering of extended family and friends of Winnie and George's. It was always a day filled with great food, fun stories, bad jokes, wine, Bloody Marys, Obama bashing by George, and reflections on the year just ending. At the center of it all was Winnie, making everyone feel right at home, and cooking some of her signature dishes that we would remember with sighs and smiles until July, and have great anticipation from then to the coming year's Holidays.
Winnie didn't ask for much in life but what she did want most are the most important things-- the love of family and friends. She got, and gave, a lot that way.
Please keep George and his family in your thoughts. George is having an especially difficult time coping with their loss and he will need a lot of TLC in the coming days, weeks and months.
Mike
We went over to see Winnie's husband George, their three daughters (Deb, Gay and Cherie) and Jeff (Deb's husband) and spent a little time with them as the reality of it all was sinking in--even knowing for a while that it would be sooner, not later. To varying degrees, they were coping as best as they could while slowly turning to the many decisions and plans that need to get done in the next few days and beyond.
Raising her daughters and then being a major part of their adult lives was Winnie's raison d'etre. She and George doted on them, making them laugh and cringe in equal measures in the years I have known the Brown family. Terry was a friend of the Brown family for many years before we entered that circle as a couple. One of the highlights every year was being invited to the Brown's a few days before Christmas for a gathering of extended family and friends of Winnie and George's. It was always a day filled with great food, fun stories, bad jokes, wine, Bloody Marys, Obama bashing by George, and reflections on the year just ending. At the center of it all was Winnie, making everyone feel right at home, and cooking some of her signature dishes that we would remember with sighs and smiles until July, and have great anticipation from then to the coming year's Holidays.
Winnie didn't ask for much in life but what she did want most are the most important things-- the love of family and friends. She got, and gave, a lot that way.
Please keep George and his family in your thoughts. George is having an especially difficult time coping with their loss and he will need a lot of TLC in the coming days, weeks and months.
Mike
Sunday, September 15, 2013
Needs lots of good vibes
A dear friend of Terry's, her art mentor Joy Hartsfield, has been diagnosed with a tumor on her tongue. She will have surgery on September 25th. Please keep her in your thoughts on that day. Hopefully the surgeon will have clear margins and Joy won't lose too much of her tongue--and she can avoid chemo + radiation down the road. Joy is a true "starving artist" and works a part-time job to survive on and keep her in art supplies. She has limited health insurance, so it's important that she can avoid long-term treatment and care.
We have not seen Winnie in a while, but hear that she is doing well, even as her cancer spreads. Please keep her in your thoughts, too.
We have started a series of tests, scans, and appointments that will lead to the jaw resecting in April. All of the doctors are on board with our plan to wait until we get back from New Zealand, but the tests and other preparations are being done now just in case this turns into an emergency--and to allow it to be done soon after we get back.The prep time is long, due the the number of doctors involved (5 or 6) and the making of the 3-D model of my jaw to help with the bone sculpting that's needed.
Finally, I am having more eye surgery on the 28th. After noticing some severe degrading of my vision the eye doc did an exam and told me that the little bit of the lens that's left in to hold the new lens in place has gone bad in both eyes, so he needs to remove the old lens bits. Why does that not surprise me? So, one will be done on the 28th and the other in October.
Mike
We have not seen Winnie in a while, but hear that she is doing well, even as her cancer spreads. Please keep her in your thoughts, too.
We have started a series of tests, scans, and appointments that will lead to the jaw resecting in April. All of the doctors are on board with our plan to wait until we get back from New Zealand, but the tests and other preparations are being done now just in case this turns into an emergency--and to allow it to be done soon after we get back.The prep time is long, due the the number of doctors involved (5 or 6) and the making of the 3-D model of my jaw to help with the bone sculpting that's needed.
Finally, I am having more eye surgery on the 28th. After noticing some severe degrading of my vision the eye doc did an exam and told me that the little bit of the lens that's left in to hold the new lens in place has gone bad in both eyes, so he needs to remove the old lens bits. Why does that not surprise me? So, one will be done on the 28th and the other in October.
Mike
Monday, August 26, 2013
Decision time on jaw resecting
I had a PET scan last week which confirmed that the ORN is still progressing. No need to tell me that after a new bone shard came out and I found another area of exposed bone in the back of my jaw. So the discussion is no longer about if I'll need the jaw resecting, it's about when it will happen. We spent a lot of time today with the oral surgeon who gave us a lot of information and answered a lot of questions.
We have decided to wait until after we return from New Zealand to do the procedure--unless of course some emergency happens in the meantime, and this needs to get done right away. The decision was based on a lot of factors, most importantly the amount of time needed to recover after the surgery, and the number of days I will need to miss from work for that. The conservative estimate is 4-6 weeks, but it could easily be longer. If I have the procedure soon, I would miss the rest of this semester and likely run out of paid sick days by then. If I can mange to wait until we get back from NZ, I would miss only about the last two weeks of spring semester, and then have several more weeks to recover over the summer, without using too many sick days.
So, we are taking a measured gamble that I can hold off until April, and manage to avoid any dramatic progression of the ORN or emergency situations between now and when we get back from NZ. But if the shit hits the fan at any time before then, we go into full resecting mode with no questions and figure out the rest from there.
As you may recall, I've described three levels of luck over the last 4+ years in my battle with the Prarie Dogs: good luck, bad luck, and S***** F***KING Luck (SFL). My record shows a long and consistent pattern of SFL, but maybe this time I can turn that around and we can have a wonderful but uneventful (ORN wise) stay in NZ. That's where Team Mike comes in--rather then needing your Good Vibes to get me through another acute episode, I need them to keep me from having an emergency before the jaw surgery happens in April.
I will admit that the thought of this procedure scares the hell out of me. It is not life threatening like the battle with cancer in 2009, but nothing about this will be simple, easy, or pain-free--and I'll need to go back into that zone of coping with pain, meds, liquid diet, etc. until I can come out on the other side of this. All in all, I'd rather be in Western New York State in the dead of winter, wearing nothing but shorts, a t-shirt, and flip flops, sitting in Rich Stadium watching the Bills lose to a local high school team.
Mike
We have decided to wait until after we return from New Zealand to do the procedure--unless of course some emergency happens in the meantime, and this needs to get done right away. The decision was based on a lot of factors, most importantly the amount of time needed to recover after the surgery, and the number of days I will need to miss from work for that. The conservative estimate is 4-6 weeks, but it could easily be longer. If I have the procedure soon, I would miss the rest of this semester and likely run out of paid sick days by then. If I can mange to wait until we get back from NZ, I would miss only about the last two weeks of spring semester, and then have several more weeks to recover over the summer, without using too many sick days.
So, we are taking a measured gamble that I can hold off until April, and manage to avoid any dramatic progression of the ORN or emergency situations between now and when we get back from NZ. But if the shit hits the fan at any time before then, we go into full resecting mode with no questions and figure out the rest from there.
As you may recall, I've described three levels of luck over the last 4+ years in my battle with the Prarie Dogs: good luck, bad luck, and S***** F***KING Luck (SFL). My record shows a long and consistent pattern of SFL, but maybe this time I can turn that around and we can have a wonderful but uneventful (ORN wise) stay in NZ. That's where Team Mike comes in--rather then needing your Good Vibes to get me through another acute episode, I need them to keep me from having an emergency before the jaw surgery happens in April.
I will admit that the thought of this procedure scares the hell out of me. It is not life threatening like the battle with cancer in 2009, but nothing about this will be simple, easy, or pain-free--and I'll need to go back into that zone of coping with pain, meds, liquid diet, etc. until I can come out on the other side of this. All in all, I'd rather be in Western New York State in the dead of winter, wearing nothing but shorts, a t-shirt, and flip flops, sitting in Rich Stadium watching the Bills lose to a local high school team.
Mike
Saturday, July 27, 2013
...and the shin bone's connected to the...jaw bone?
About two weeks ago the oral surgeon told me that jaw replacement surgery (Mandibular resecting) is now inevitable. His first thought was that it would need to happen sooner, not later. But after he did a more thorough examination and reviewed the CT scan I had done in April, he is now predicting that I have 6 months to 2 years before this will become necessary.
The ORN is still progressing, and the scan showed more dead bone tissue in that area--so I'll have more events like the most recent one at the beach. Right now the daily pain level is manageable without regular meds, but every once in a while I need something for breakthrough pain. The bigger concern is a growing area of numbness that means the nerve on that side has become involved--that's what's making the resecting inevitable.
You can Google 'mandibular resecting' to see what this will entail. There are two options--but both start with taking out about four inches of my left jaw. Option one is to replace it with a titanium plate. Option two is to take out a piece of my shin bone, sculpt it to the shape of the removed bone, and then graft that in as my new jaw. This option is more desirable because the new jaw will have its own blood supply...and I won't set off alerts at the airport when I go through TSA security. So, unless things change, my shin bone WILL be connected to my jaw bone sometime in the future.
I'll spare you the rest of the details on this procedure until "inevitable" becomes "imminent." Now knowing that it will happen, we have our fingers crossed that it can wait until we come back from New Zealand in April. We will be living there for 10 weeks while I am a visiting professor at the University of Canterbury. In the meantime I am monitoring my symptoms closely and being careful not to have an accident that could fracture my deteriorated left jaw. If that were to happen, "inevitable" would become "immediate."
We'll keep you posted.
Mike
The ORN is still progressing, and the scan showed more dead bone tissue in that area--so I'll have more events like the most recent one at the beach. Right now the daily pain level is manageable without regular meds, but every once in a while I need something for breakthrough pain. The bigger concern is a growing area of numbness that means the nerve on that side has become involved--that's what's making the resecting inevitable.
You can Google 'mandibular resecting' to see what this will entail. There are two options--but both start with taking out about four inches of my left jaw. Option one is to replace it with a titanium plate. Option two is to take out a piece of my shin bone, sculpt it to the shape of the removed bone, and then graft that in as my new jaw. This option is more desirable because the new jaw will have its own blood supply...and I won't set off alerts at the airport when I go through TSA security. So, unless things change, my shin bone WILL be connected to my jaw bone sometime in the future.
I'll spare you the rest of the details on this procedure until "inevitable" becomes "imminent." Now knowing that it will happen, we have our fingers crossed that it can wait until we come back from New Zealand in April. We will be living there for 10 weeks while I am a visiting professor at the University of Canterbury. In the meantime I am monitoring my symptoms closely and being careful not to have an accident that could fracture my deteriorated left jaw. If that were to happen, "inevitable" would become "immediate."
We'll keep you posted.
Mike
Saturday, July 6, 2013
I had a hard run...
I had a hard run
Runnin' the Peachtree
All day pouring
But not a drop on me
The Peachtree 10K Road Race is very close to the top of my Cancer Revenge List. I have lived in ATL for 18 runnings of the Peachtree and have only missed it three times--once in 2009, as I was recovering from my chemo + radiation treatments. So, as soon as the weather gets good enough to run outside, I re-dedicate myself to getting in the training I need to do this run (it is definitely not a race for me). This year was extra difficult as I struggled with lower back pain and got in only minimal training. My running partner Jeff (in the picture above) also had very little training. He is Winnie's son-in-law, and has spent a lot of time lately with Winnie and her family in the hospital. More on Winnie below.
We caught a big break with some cool, overcast weather on the 4th. The forecast was for heavy rain all day, but after pouring the entire night before, it didn't rain at all while we were at the starting line or during our run. It did start again about two hours after we finished and has been raining almost constantly since then.
We managed to run the entire 10K distance, except for the top of three very big hills. The only people who were more amazed than us by that was Jeff's wife, Deb, and my wife Terry. They were convinced that if we did manage to finish the race at all, it would be by walking most of it, and with the EMTs close behind us, ready to catch us when we collapsed.
After slogging through a muddy Piedmont park to collect our race t-shirts (which were pretty good this year, for a change), we found our way to the car and enjoyed the "Coldest beers ever" and wondered out loud how in the hell we pulled off running 95% of the course.
After the traditional post-race orange rolls we went over to Winnie and George's for a great barbeque meal. Winnie was looking good, and very happy to be back home. She did get tired fast, but was in great spirits. The reality is that her cancer is not curable, and no further treatments are planned. Because her cancer is so rare, they don't know how fast it might spread--but they are sure it has. From there Terry and I went to Jeff and Deb's mountain home and enjoyed the great scenery when we could get out between rain showers.
The purpose of my Cancer Revenge List is to get things back into my life that this disease took away from me for a while--and could have taken from me forever. So, like it has for 14 or so other years in the past, the 4th of July and the Peachtree Road Race came and went without incident, and my "new normal" as a cancer survivor keeps plugging along quietly.
And, on days like this 4th of July, when I am sweaty and tired, sipping that post-race beer with Jeff, I am reminded to thank all of you on Team Mike who helped make this new-normal possible.
Mike
Sunday, June 9, 2013
Team Mike on call for Winnie
I have not given an update on Winnie for a while because things were developing on her treatment plans and there was no news to report. Now there is. She has been accepted into a clinical trial for a new chemo pill. She takes the pill once a week for about 20 weeks. Even in pill form, the chemo drug is an ass kicker and Winnie is in the throes of its side effects right now--nausea, dehydration, loss of appetite, along with the severe pain from her cancer. Terry saw her a few days ago and came back very concerned.
So, this is a call for good vibes from Team Mike for Winnie. Please keep her in your daily thoughts and give her strength from the distance. Winnie is an amazing woman in many ways, but to be honest, struggling through tough times is not her strength--so she can use all of the help she can get from others.
As for me, the ORN episode last month has passed. I didn't detect the shard coming out--it probably got washed down with oysters and beer at the beach--but it's gone. The pain and swelling have gone down to their usual levels, which can be tolerated without meds. Yogi Berra said that "It ain't over until it's over" which is true about ORN. The problem is that it ain't over until it doesn't happen again, so there is no way to know if this will be the last episode. I see my oral surgeon in two weeks so hopefully he can give me a good assessment of things and keep me off the path to a jaw replacement procedure.
But for now, please give your thoguhts and good vibes on Winnie, her husband, and their family.
Mike
So, this is a call for good vibes from Team Mike for Winnie. Please keep her in your daily thoughts and give her strength from the distance. Winnie is an amazing woman in many ways, but to be honest, struggling through tough times is not her strength--so she can use all of the help she can get from others.
As for me, the ORN episode last month has passed. I didn't detect the shard coming out--it probably got washed down with oysters and beer at the beach--but it's gone. The pain and swelling have gone down to their usual levels, which can be tolerated without meds. Yogi Berra said that "It ain't over until it's over" which is true about ORN. The problem is that it ain't over until it doesn't happen again, so there is no way to know if this will be the last episode. I see my oral surgeon in two weeks so hopefully he can give me a good assessment of things and keep me off the path to a jaw replacement procedure.
But for now, please give your thoguhts and good vibes on Winnie, her husband, and their family.
Mike
Monday, May 13, 2013
The light at the end of the ORN tunnel...fading away?
After several months of no ORN 'events' it appears that I'm looking at another round of it. Signs of a new ORN event have surfaced in the last week or so. I'll spare you the details, but there is little doubt that this shit is not over yet. If this round goes like the others before it, I'm looking and 2-3 months of irritation, pain, and swelling before this new bone fragment works its way out of my mandible. It's too early to tell how large this new piece might be, but at this point, size doesn't matter--it's more significant that it's happening at all, because it means that the ORN is still there.
Short of having a surgeon go in and examine my jaw visually, the only way to know that ORN is over is if it doesn't ever come back. I had allowed myself to start to think that MAYBE I had seen the last of this, but that ain't happening, for sure. It's too soon to know if this will put me back on the path to jaw replacement surgery, but I liked it a whole lot better when that thought was not on my mind. I see my oral surgeon in mid-June, so will have that discussion with him then. Hopefully my appointment won't be during a Red Sox game, so he can give me his full attention.
So, time to gear up again and see how this unfolds. Terry and I are at the beach until the end of May, which means I can treat my pain with Margaritas and eat oysters, fish and shrimp on my new soft-food diet. I can handle that kind of medicine.
Mike
Thursday, May 2, 2013
Update on Winnie
Winnie was accepted into a clinical trial for a new oral chemo drug (maybe two). The trial starts none too soon, as her pain and other symptoms have progressed steadily. Her husband and family are naturally very concerned and the stress of it all is taking a big toll.
I don't know much about the clinical trial, but do know that Winnie is struggling and could use some Team Mike Good Vibes over the coming days and weeks.
Please keep her in your thoughts.
Mike
I don't know much about the clinical trial, but do know that Winnie is struggling and could use some Team Mike Good Vibes over the coming days and weeks.
Please keep her in your thoughts.
Mike
Wednesday, April 17, 2013
Team Mike 4, Prairie Dogs 0
I got the call today that my CT scan on Monday showed NED (No Evidence of Disease)! Of course that is wonderful news.
That puts me 4 years in remission. The magic number is five years for the doctors to declare this cancer as cured. That doesn't mean I couldn't get a new cancer after that, but this pack of Prairie Dogs would be history.
As it has the last three times, the NED result is cause for both celebration and reflection. Of course we are thrilled by this result, but at the same time the annual scan brings back the memories of what we have endured to get to this point. And, it's always "we." In one of my very first entries I said that fighting cancer is a team effort--and Team Mike has been wonderful over these four years. We could not have made it without your love, humor, support, and Good Vibes.
I'll be back here whenever I think there is more to add to this story. In the meantime, know that we appreciate all that Team Mike has done for us, and if we can ever repay each and every one of you, we will do that.
Mike
That puts me 4 years in remission. The magic number is five years for the doctors to declare this cancer as cured. That doesn't mean I couldn't get a new cancer after that, but this pack of Prairie Dogs would be history.
As it has the last three times, the NED result is cause for both celebration and reflection. Of course we are thrilled by this result, but at the same time the annual scan brings back the memories of what we have endured to get to this point. And, it's always "we." In one of my very first entries I said that fighting cancer is a team effort--and Team Mike has been wonderful over these four years. We could not have made it without your love, humor, support, and Good Vibes.
I'll be back here whenever I think there is more to add to this story. In the meantime, know that we appreciate all that Team Mike has done for us, and if we can ever repay each and every one of you, we will do that.
Mike
Monday, April 8, 2013
Scan coming up--need good vibes
I have my annual scan on April 15--four years post-treatments. While I don't sense anything that might indicate a positive scan, I won't allow myself to be over-confident and 100% sure that I'll get a NED (no evidence of disease) result. On my cancer support discussion board, we call this "scan-xiety"--a
little bit of fear that an upcoming scan might discover evidence that
someone's cancer has recurred.
And that's what cancer can do to you--it never lets you have a total peace of mind that "this shit is finally over." This disease is as unpredictable as it is dangerous. But all we can do is keep moving along with our new-normal lives, the proverbial one-day-at-a-time. Because if you let the doubt and fear grow too great, the disease has then found another way to beat you--and that can't be allowed.
When I first started this blog I was very intentional to call it "Mike Metzler Beats Cancer." I was strong and confident (those who know me would call it cocky) that I would beat this thing, and then simply go on with life as if I had recovered from a cold or the flu. Sometimes I think that my little show of bluster was nothing more than naive courage--had I any sense of how long and difficult this would be, my cockiness would have been tempered--a lot.
And, I think that's why survivors, me included, feel scan-xiety. We now know just how hard all of this was the first time through it, and there is a fear that we won't have the strength and good fortune to make it through again.
So, on the 15th, please make sure that your taxes have been sent off, and find a few moments to send some good vibes to me and Terry. I don't know when we'll get the results, but will let you know just as soon as we can.
Mike
And that's what cancer can do to you--it never lets you have a total peace of mind that "this shit is finally over." This disease is as unpredictable as it is dangerous. But all we can do is keep moving along with our new-normal lives, the proverbial one-day-at-a-time. Because if you let the doubt and fear grow too great, the disease has then found another way to beat you--and that can't be allowed.
When I first started this blog I was very intentional to call it "Mike Metzler Beats Cancer." I was strong and confident (those who know me would call it cocky) that I would beat this thing, and then simply go on with life as if I had recovered from a cold or the flu. Sometimes I think that my little show of bluster was nothing more than naive courage--had I any sense of how long and difficult this would be, my cockiness would have been tempered--a lot.
And, I think that's why survivors, me included, feel scan-xiety. We now know just how hard all of this was the first time through it, and there is a fear that we won't have the strength and good fortune to make it through again.
So, on the 15th, please make sure that your taxes have been sent off, and find a few moments to send some good vibes to me and Terry. I don't know when we'll get the results, but will let you know just as soon as we can.
Mike
Thursday, March 28, 2013
Update on Winnie, not good news
We don't know the full story yet, but we do know that Winnie's recent radiation treatments did not halt her cancer. Just the opposite, the scan revealed a large tumor in that same place on her face, and it's possibly growing into her brain. She has another appointment soon to get a follow-up opinion on the new growth and what the plan will be from here.
We'll keep you posted, but in the meantime please send your Good Vibes to Winnie and her family.
Mike
We'll keep you posted, but in the meantime please send your Good Vibes to Winnie and her family.
Mike
Thursday, March 7, 2013
No News Is Good News
It's hard to believe that it's been over 5 weeks since I've posted anything, but that just means no news is good news. I have not detected any new ORN spots since the Trophy Shard came out in December and another very tiny one came out in late January. I have detected some slow healing in the crater in my jaw, and that's another good sign. I am trying not to get overly confident, since the ORN could resurface
any time in the next 10 years or more, but so far, so good.
I do wake up every day with some considerable pain in my jaw--I think from the pressure of sleeping on my side at night. I have tried to fall asleep on my back, but just seem to naturally roll over to one side in my sleep. The good news is that the pain subsides a lot once I'm up and around in the morning. I'm never pain-free in that area, but don't need any meds to get me through the day, so I'm thankful for that.
The next step is to get my dentist's opinion on when he can start to do work on my teeth again. I've pretty well resolved that I'm looking at full dentures, but he needs to wait until the ORN has stabilized before that process can begin. It would not do any good to get dentures and then have my jaw start to deteriorate again.
We have no update on our friend Winnie. She has a scan soon to get the preliminary results of her second round of treatments, but it's likely that any scan this soon will produce a false positive. I have not seen her recently, but Terry has and tells me that Winnie is in mostly good spirits--but does worry a lot about the outcome of her last treatments.
More soon.
Mike
I do wake up every day with some considerable pain in my jaw--I think from the pressure of sleeping on my side at night. I have tried to fall asleep on my back, but just seem to naturally roll over to one side in my sleep. The good news is that the pain subsides a lot once I'm up and around in the morning. I'm never pain-free in that area, but don't need any meds to get me through the day, so I'm thankful for that.
The next step is to get my dentist's opinion on when he can start to do work on my teeth again. I've pretty well resolved that I'm looking at full dentures, but he needs to wait until the ORN has stabilized before that process can begin. It would not do any good to get dentures and then have my jaw start to deteriorate again.
We have no update on our friend Winnie. She has a scan soon to get the preliminary results of her second round of treatments, but it's likely that any scan this soon will produce a false positive. I have not seen her recently, but Terry has and tells me that Winnie is in mostly good spirits--but does worry a lot about the outcome of her last treatments.
More soon.
Mike
Friday, February 1, 2013
Serious Good Vibes Needed for Winnie
Our friend Winnie Brown has had a recurrence of her cancer and will undergo a second round of radiation treatments, starting this coming Monday. This is a very critical series of treatments. If it does not work, she is looking at a very grim prognosis.
Her cancer is extremely rare, with fewer than 400 cases since in was first identified in the early 1980s. You can learn more about it by following this link:
http://emedicine.medscape.com/article/1101894-overview
With so few cases, the doctors have little to go by for a treatment plan, so they can't say much about the chances of success. This round of radiation will likely take her right to the lifetime dosage limit--so it has to work for her. Chemotherapy is not a treatment option for her cancer.
Team Mike can increase those chances with your Good Vibes for Winnie, her husband George, and their family--all of whom are very close friends of ours.
As for me, I continue to feel better after the Trophy Shard came out. I have very little pain in that area, and I have an increased range of motion in my jaw, which makes eating much more comfortable. Slowly but surely, it's getting better now.
Mike
Her cancer is extremely rare, with fewer than 400 cases since in was first identified in the early 1980s. You can learn more about it by following this link:
http://emedicine.medscape.com/article/1101894-overview
With so few cases, the doctors have little to go by for a treatment plan, so they can't say much about the chances of success. This round of radiation will likely take her right to the lifetime dosage limit--so it has to work for her. Chemotherapy is not a treatment option for her cancer.
Team Mike can increase those chances with your Good Vibes for Winnie, her husband George, and their family--all of whom are very close friends of ours.
As for me, I continue to feel better after the Trophy Shard came out. I have very little pain in that area, and I have an increased range of motion in my jaw, which makes eating much more comfortable. Slowly but surely, it's getting better now.
Mike
Friday, January 18, 2013
Some light at the end of the ORN tunnel?
I had an appointment this week with the oral surgeon who did the two debridements and showed him the trophy shard that popped out of my jaw on Christmas day. He said it was one of the largest he'd ever seen, and that it was probably the main source of the pain and swelling I've experienced for well over a year. As always happens when one of the shards comes out, that area feels a lot better and the swelling has gone way down.
The best news from him was that he sees good evidence that the area is starting to heal, even if ever so slowly. Now that the trophy shard is out, the healing should accelerate--so I don't have to see him for 6 months. What should happen next is that the new gum tissue will get thicker and stronger and build back up. It won't ever build up to be even with the adjacent areas, but the size of the crater in my jawline will get smaller and smaller as the gum tissue grows back.
The doctor told me that I have about 50% of my jaw bone left in that spot, but he thinks that the remaining bone is very strong. There will always be the risk of a fracture to that area, but as long as I don't chew any ice cubes, open beer bottles with my teeth, walk into any doors, or get punched by Terry, I should be OK.
So, three years after it started, this could be the light at the end of the ORN tunnel. And, what a long, strange tunnel it's been. At one point I was sure that I was heading towards a jaw replacement, so this a huge relief.
Coming up next will be my annual scan, in April. If that is clean, I will be four years in remission, with one year left before I would be declared cured of this cancer.
Of course, all of this good news comes with the realization that I could still have more side effects and/or get a different kind of cancer down the road--but that is on my mind less and less as each day goes by. I'm thankful for where I am, for how much of my life I've gotten back, and for all the love and support and Good Vibes that Terry and I have received from family, friends and people we don't even know. Terry did a little investigative work and learned that this blog has been viewed more than 30,000 times since it started in February of 2009. Probably 10,000 of those views were by Randy Varley--but that still leaves a pretty large number left.
I will continue to post periodically, so don't stay away too long after this good news. We are monitoring Winnie's progress (her cancer was confirmed with biopsy--no word yet about her treatment plan), and learned just the other day that the brother of one of Terry's best friends has the same cancer I did and will start his treatments soon. Never a day off in Cancer World, even on days when some good news happens.
Mike
The best news from him was that he sees good evidence that the area is starting to heal, even if ever so slowly. Now that the trophy shard is out, the healing should accelerate--so I don't have to see him for 6 months. What should happen next is that the new gum tissue will get thicker and stronger and build back up. It won't ever build up to be even with the adjacent areas, but the size of the crater in my jawline will get smaller and smaller as the gum tissue grows back.
The doctor told me that I have about 50% of my jaw bone left in that spot, but he thinks that the remaining bone is very strong. There will always be the risk of a fracture to that area, but as long as I don't chew any ice cubes, open beer bottles with my teeth, walk into any doors, or get punched by Terry, I should be OK.
So, three years after it started, this could be the light at the end of the ORN tunnel. And, what a long, strange tunnel it's been. At one point I was sure that I was heading towards a jaw replacement, so this a huge relief.
Coming up next will be my annual scan, in April. If that is clean, I will be four years in remission, with one year left before I would be declared cured of this cancer.
Of course, all of this good news comes with the realization that I could still have more side effects and/or get a different kind of cancer down the road--but that is on my mind less and less as each day goes by. I'm thankful for where I am, for how much of my life I've gotten back, and for all the love and support and Good Vibes that Terry and I have received from family, friends and people we don't even know. Terry did a little investigative work and learned that this blog has been viewed more than 30,000 times since it started in February of 2009. Probably 10,000 of those views were by Randy Varley--but that still leaves a pretty large number left.
I will continue to post periodically, so don't stay away too long after this good news. We are monitoring Winnie's progress (her cancer was confirmed with biopsy--no word yet about her treatment plan), and learned just the other day that the brother of one of Terry's best friends has the same cancer I did and will start his treatments soon. Never a day off in Cancer World, even on days when some good news happens.
Mike
Friday, January 11, 2013
ORN Update and Need More Good Vibes for Winnie
It's been a while since my last post, which generally means that No news is good news. My pain level and swelling increased significantly right after the last post on December 22--to the point that I told Terry it might be time to head to the ER for some stronger pain meds. Then on Christmas day, a huge chunk of dead bone came out of my jaw, and things started to get better right away. Until then, the ORN bone shards were the size of a grain of rice. This sucker measured in at three-quarters of an inch long and about a quarter of an inch wide! Picture a paper clip that size and thickness, and you have an idea. It just popped out while I was using a toothpick to clean some food out of that area, and it scared the shit out of me when I first saw it--thinking that the rest of my jaw bone was coming out too.
But, every time one of the shards comes out, the irritation to that area stops, and the pain and swelling go down. Since then I've been able to gradually reduce my pain meds, to the point that I am now opioid-free for the first time in over a year.
I have an appointment with my oral surgeon next week, and can't wait to show him my "trophy shard" to see if he's ever seen one that large.
I still have a large crater in the lower left part of my jaw, but hopefully that area can really start to heal for good now.
We recently got word that our friend, Winnie's, biopsy did not go well. Even before the specimen was sent to the lab, her doc said she was 99.9% sure it was cancer--again. Her cancer is extremely rare--with fewer than 400 recorded cases EVER. It is so rare that they don't have any real knowledge of how to treat it. We'll know more in the coming weeks, but please send her some Good Vibes when she comes to mind for you. We are very afraid of what Winnie and her family are looking at with this thing.
Mike
But, every time one of the shards comes out, the irritation to that area stops, and the pain and swelling go down. Since then I've been able to gradually reduce my pain meds, to the point that I am now opioid-free for the first time in over a year.
I have an appointment with my oral surgeon next week, and can't wait to show him my "trophy shard" to see if he's ever seen one that large.
I still have a large crater in the lower left part of my jaw, but hopefully that area can really start to heal for good now.
We recently got word that our friend, Winnie's, biopsy did not go well. Even before the specimen was sent to the lab, her doc said she was 99.9% sure it was cancer--again. Her cancer is extremely rare--with fewer than 400 recorded cases EVER. It is so rare that they don't have any real knowledge of how to treat it. We'll know more in the coming weeks, but please send her some Good Vibes when she comes to mind for you. We are very afraid of what Winnie and her family are looking at with this thing.
Mike
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