Cancer is not taking any time away from our lives this Holiday Season. As I am in the familiar wait-and-see mode from my second debridement, we got news recently that a good friend of ours is still battling her own cancer. Winnie Brown, who was mentioned here about a year ago, has an extremely rare form of cancer that attacks nerve tissue. In her case, it's in the area above and to the side of her right eye, which is an extremely tricky area to treat, as you can well imagine. She had surgery and radiation treatments last winter, and had been doing very well with her recovery. But after noticing some new pain around her eye, she has been told that either her cancer has come back and/or new cancer is present. She has an appointment on January 8th, at which time she'll hear more details from her doctors.
Please take a few moments to include Winnie, her husband George and their entire family in your thoughts as you give thanks this time of year and as January 8th comes around. I can tell you about power of Team Mike's Good Vibes by reporting that Flo Prusak is doing better. She still has a long way to go, but her condition is improving little by little. I am told that Mr. Prusak expanded Team Mike for her by printing out that post and distributing it to people around them, looking to get as many Good Vibes as possible sent Flo's way.
Keep up the good work and expect something special from Santa for helping us and so many other people as a member of Team Mike.
Mike
Saturday, December 22, 2012
Saturday, December 1, 2012
Sometimes someone just gets it
For reasons that I can't put a handle on just yet, I've found myself lately asking the question we all did as kids when in the middle of something we didn't like:
"Can we play a different game now?"
It's been more than four years now since the symptoms of my cancer started to show, and I think that I'm just...well, pooped from the whole chain of events that have unfolded over that time. Even my good fortune of having survived this thing sometimes can't lift my spirits enough, and I just want a day or two when things were like they were before this all started. Then, something like the article below comes along and puts it all in perspective for me. It was written a little while ago by Don Rymer, who was a TV and movie writer. He passed away a few days ago from the same cancer I had. It might not have the same impact for those of you who've not had cancer or been a caregiver, but it really hit home for me.
"Sad Eyes"
by Don Rhymer
Cancer pushes everybody’s buttons differently. For some, it’s a scary “what if it happened to me?” For others, it’s an all too present reminder of the traumatic experience of a family member or close friend.
Either way, cancer is a devastating car crash that even the most disciplined bystander has a hard time turning away from.
After I was diagnosed with cancer of the head and neck, I learned quickly that everyone’s experience with cancer is different, and you can’t judge people by their response to your diagnosis. You can only count on the fact that it is probably scary for them, or at the very least emotionally charged, so you just have to give them grace.
I appreciate the “cool kids” who come with a joke. Or at least an attempt at one. I have always felt “whistling through the graveyard” is the best way to get to the other side. It acknowledges that, yes, you are “up the creek,” but that doesn’t mean the journey can’t involve bits of inspired slapstick and the occasional fart joke.
In the bottom of the ninth with the game on the line, you don’t want someone stopping by the on-deck circle with a tear and a macaroni casserole.
The “medical geeks” are okay too. The ones who drill you with a million questions about symptoms and side effects and come off just a little bit creepy when they ask to see your surgical site. Usually, these people watch far too many medical shows.
I can even handle the “it could be worse” people. There are certain people in this world who feel that true empathy is pointing out how utterly awful things could be and actually are for someone else they know. “So sorry you have cancer, Don. But it could be worse. My friend was mauled by a bear that ate 80 percent of his body, and now his wife has to roll him around in a Tonka® truck.”
The only ones I can’t handle are the ones who come at you with the dreaded “sad eyes.” They slink up with droopy faces and speak slowly as if talking to a child or a foreign exchange student. “How are youuuu?” No matter how upbeat your response, their reaction is almost always, “Awww!”
Now again, I try to give them grace, but sister, it ain’t always easy. Nothing reminds you of your own mortality like someone who appears to be practicing to greet your loved ones at your funeral. “He looked so healthy – up until the end when he lost all that weight and his wife had to roll him around in a Tonka truck.”
The point is, in the bottom of the ninth with the game on the line, you don’t want someone stopping by the on-deck circle with a tear and a macaroni casserole. You want someone slapping you on the back and offering you his or her lucky bat.
It’s not easy having cancer, and I know it’s certainly no picnic being the friend or family member of someone with cancer either. You don’t know what to say or do. You don’t know if you should be present or keep your distance, if you should send flowers or a whoopee cushion. Well, speaking for cancer survivors everywhere, I can only say that we can’t help you.
Because we don’t know, either. We’ve never been through this before, so we don’t always know what we want or need. The only real solution is the hardest one – to be completely honest. To do what you want to do, when you have the opportunity to do it. To say what you feel, when you feel it. And for us on this side of the equation? We have the hardest task of all – to develop the courage to ask for help when we need it.
There are no right answers in cancer world, but that also means there are few wrong ones. Except for “sad eyes,” which are universally unwelcome, and macaroni casseroles, which are not gluten free and are bad for my colon."
Thanks, Don. I can now tolerate this game a little better.
Mike
"Can we play a different game now?"
It's been more than four years now since the symptoms of my cancer started to show, and I think that I'm just...well, pooped from the whole chain of events that have unfolded over that time. Even my good fortune of having survived this thing sometimes can't lift my spirits enough, and I just want a day or two when things were like they were before this all started. Then, something like the article below comes along and puts it all in perspective for me. It was written a little while ago by Don Rymer, who was a TV and movie writer. He passed away a few days ago from the same cancer I had. It might not have the same impact for those of you who've not had cancer or been a caregiver, but it really hit home for me.
"Sad Eyes"
by Don Rhymer
Cancer pushes everybody’s buttons differently. For some, it’s a scary “what if it happened to me?” For others, it’s an all too present reminder of the traumatic experience of a family member or close friend.
Either way, cancer is a devastating car crash that even the most disciplined bystander has a hard time turning away from.
After I was diagnosed with cancer of the head and neck, I learned quickly that everyone’s experience with cancer is different, and you can’t judge people by their response to your diagnosis. You can only count on the fact that it is probably scary for them, or at the very least emotionally charged, so you just have to give them grace.
I appreciate the “cool kids” who come with a joke. Or at least an attempt at one. I have always felt “whistling through the graveyard” is the best way to get to the other side. It acknowledges that, yes, you are “up the creek,” but that doesn’t mean the journey can’t involve bits of inspired slapstick and the occasional fart joke.
In the bottom of the ninth with the game on the line, you don’t want someone stopping by the on-deck circle with a tear and a macaroni casserole.
The “medical geeks” are okay too. The ones who drill you with a million questions about symptoms and side effects and come off just a little bit creepy when they ask to see your surgical site. Usually, these people watch far too many medical shows.
I can even handle the “it could be worse” people. There are certain people in this world who feel that true empathy is pointing out how utterly awful things could be and actually are for someone else they know. “So sorry you have cancer, Don. But it could be worse. My friend was mauled by a bear that ate 80 percent of his body, and now his wife has to roll him around in a Tonka® truck.”
The only ones I can’t handle are the ones who come at you with the dreaded “sad eyes.” They slink up with droopy faces and speak slowly as if talking to a child or a foreign exchange student. “How are youuuu?” No matter how upbeat your response, their reaction is almost always, “Awww!”
Now again, I try to give them grace, but sister, it ain’t always easy. Nothing reminds you of your own mortality like someone who appears to be practicing to greet your loved ones at your funeral. “He looked so healthy – up until the end when he lost all that weight and his wife had to roll him around in a Tonka truck.”
The point is, in the bottom of the ninth with the game on the line, you don’t want someone stopping by the on-deck circle with a tear and a macaroni casserole. You want someone slapping you on the back and offering you his or her lucky bat.
It’s not easy having cancer, and I know it’s certainly no picnic being the friend or family member of someone with cancer either. You don’t know what to say or do. You don’t know if you should be present or keep your distance, if you should send flowers or a whoopee cushion. Well, speaking for cancer survivors everywhere, I can only say that we can’t help you.
Because we don’t know, either. We’ve never been through this before, so we don’t always know what we want or need. The only real solution is the hardest one – to be completely honest. To do what you want to do, when you have the opportunity to do it. To say what you feel, when you feel it. And for us on this side of the equation? We have the hardest task of all – to develop the courage to ask for help when we need it.
There are no right answers in cancer world, but that also means there are few wrong ones. Except for “sad eyes,” which are universally unwelcome, and macaroni casseroles, which are not gluten free and are bad for my colon."
Thanks, Don. I can now tolerate this game a little better.
Mike
Wednesday, November 21, 2012
So Far, So Good....but need Good Vibes for Flo'
It's been almost a month since the second debridement. The pain and swelling have gone down quite a bit, as has my use of the pain meds. I'm not entirely pain-free, but it's very manageable now. I saw the oral surgeon two days ago and he's pleased with my progress. Still a long ways to go until the healing is complete, but off to a good start!
So, all of that is great news on the day before Thanksgiving and adds to the long list of things to be thankful about. Over 3 and a half years in remission, and closing in fast on the five-year timeline to be declared cured of this set of Prairie Dogs.
Speaking of those PDs, I read a bit of medical research this week that made me even more thankful this holiday season. All along I was under the impression that my cancer had a cure rate of over 80%, which gave me great confidence throughout my treatments. It turns out that is the rate for HPV+ head and neck cancers (Google that to learn more). I am HPV-, and the survival rate for that group is about 55%, which would have made me a lot more worried three+ years ago. I now understand why all of my doctors were so impressed with my recovery as I made such good progress. Sometimes, ignorance IS bliss.
With all of my good news, I need to ask Team Mike to send some Good Vibes to the mother of one of my best friends. who is fighting off a life threatening infection from hip surgery a little while ago. Mrs. Florence (aka, Flo) Prusak was a big part of my life in high school, after I met her son Paul--who has remained a best friend over all those years. Flo has a great sense of humor, fine tuned by putting up with a bunch of knuckleheads that Paul and I were a part of in high school and beyond--even to this day. Flo was a big part of Team Mike when I needed it the most, and made me her special brownies (no, not that kind of special brownies) the first time I saw her post-treatments--as she has done for me for over 40 years. Paul and his wife Sue, and Mr. Prusak are with Flo in Florida as she is trying to turn the corner on this infection. Please include them in your Thanksgiving prayers.
Mike
So, all of that is great news on the day before Thanksgiving and adds to the long list of things to be thankful about. Over 3 and a half years in remission, and closing in fast on the five-year timeline to be declared cured of this set of Prairie Dogs.
Speaking of those PDs, I read a bit of medical research this week that made me even more thankful this holiday season. All along I was under the impression that my cancer had a cure rate of over 80%, which gave me great confidence throughout my treatments. It turns out that is the rate for HPV+ head and neck cancers (Google that to learn more). I am HPV-, and the survival rate for that group is about 55%, which would have made me a lot more worried three+ years ago. I now understand why all of my doctors were so impressed with my recovery as I made such good progress. Sometimes, ignorance IS bliss.
With all of my good news, I need to ask Team Mike to send some Good Vibes to the mother of one of my best friends. who is fighting off a life threatening infection from hip surgery a little while ago. Mrs. Florence (aka, Flo) Prusak was a big part of my life in high school, after I met her son Paul--who has remained a best friend over all those years. Flo has a great sense of humor, fine tuned by putting up with a bunch of knuckleheads that Paul and I were a part of in high school and beyond--even to this day. Flo was a big part of Team Mike when I needed it the most, and made me her special brownies (no, not that kind of special brownies) the first time I saw her post-treatments--as she has done for me for over 40 years. Paul and his wife Sue, and Mr. Prusak are with Flo in Florida as she is trying to turn the corner on this infection. Please include them in your Thanksgiving prayers.
Mike
Friday, October 26, 2012
Second Debridement Done...You Know What is Coming Now
The second debridement was done yesterday (10/25) and it looks like it was a good decision. The doctor poked around and found two "large" (no exact size given) chunks of dead and detached bone tissue. (Why does it sound less gross when you say 'tissue'?). He also cut out a small piece of healthy bone tissue that was left in the first time to help promote healing. That strategy obviously didn't help any, but it made sense at the time.
I came out of the procedure in a lot of pain--most of it from the insertion of a breathing tube down my throat as a safety measure. After being given a percocet pill that hardly lowered the pain at all, I came home and went to my old stand-by friend the Roxicet bottle to get some relief. That worked very well--too well in fact. If that's what I'll need to manage the pain, I'll also need to be very careful about how long I stay on it so I can try to avoid the terrible detox I went through after Debridement #1. As bad as it was, I was lucky to go through that in warm weather at the beach in Florida while on vacation. I don't even want to think about going through that in chilly fall weather, at home, while trying to keep up some kind of work schedule. And, we got the kitchen knives sharpened recently, so I definitely don't want to get sideways with Terry from a prolonged detox period.
So, once again it's more wait and see. It should take 4-6 weeks for a healing trend to appear and stabilize, and another 2-3 months for a significant amount of healing to occur (if it's going to happen). It's way too early to know anything, and this is going to take a while, so please send along more Good Vibes from time to time. I'll send updates when I think they are necessary.
Speaking of Good Vibes of a different kind, let me say "Thanks" for all the great 60th birthday cards many of you sent last week. Almost all of you followed Terry's secret instructions that your cards not be serious, or spare my feelings in the least. I haven't laughed so hard while getting insulted by friends, family, and total strangers since, well...my 50th birthday.
Mike
I came out of the procedure in a lot of pain--most of it from the insertion of a breathing tube down my throat as a safety measure. After being given a percocet pill that hardly lowered the pain at all, I came home and went to my old stand-by friend the Roxicet bottle to get some relief. That worked very well--too well in fact. If that's what I'll need to manage the pain, I'll also need to be very careful about how long I stay on it so I can try to avoid the terrible detox I went through after Debridement #1. As bad as it was, I was lucky to go through that in warm weather at the beach in Florida while on vacation. I don't even want to think about going through that in chilly fall weather, at home, while trying to keep up some kind of work schedule. And, we got the kitchen knives sharpened recently, so I definitely don't want to get sideways with Terry from a prolonged detox period.
So, once again it's more wait and see. It should take 4-6 weeks for a healing trend to appear and stabilize, and another 2-3 months for a significant amount of healing to occur (if it's going to happen). It's way too early to know anything, and this is going to take a while, so please send along more Good Vibes from time to time. I'll send updates when I think they are necessary.
Speaking of Good Vibes of a different kind, let me say "Thanks" for all the great 60th birthday cards many of you sent last week. Almost all of you followed Terry's secret instructions that your cards not be serious, or spare my feelings in the least. I haven't laughed so hard while getting insulted by friends, family, and total strangers since, well...my 50th birthday.
Mike
Wednesday, October 10, 2012
Coming soon, "Debridement, The Sequel"
It looks like my run of good luck was a short one. First, I learned that I have some swelling in the retina of my right eye, apparently caused by the cataract surgery two months ago. While it's not causing any pain, it has diminished the vision in that eye which is a bit troublesome. The plan is to continue the drops in that eye and see a retina specialist in 2-3 weeks.
A bigger problem is that the swelling and pain in my jaw came back and I've had to increase my pain meds a bit. I saw the oral surgeon yesterday and it was decided to do a second debridement of that area. A CT scan shows that some small pieces of dead bone have become detached from my jaw and are irritating the nerves in that area--causing the pain and swelling. The hope was that my body would reject the dead bone tissue, but it's way past the time for that to have happened, so a second surgery is the best option.
So, we are calling Team Mike back into action on October 25 to send Good Vibes for the Debridement Sequel. This one won't be as extensive as the first one, with no teeth to be extracted, but the Good Vibes are needed to help this thing heal once and for all so I can eat food without every bite hurting.
Mike
A bigger problem is that the swelling and pain in my jaw came back and I've had to increase my pain meds a bit. I saw the oral surgeon yesterday and it was decided to do a second debridement of that area. A CT scan shows that some small pieces of dead bone have become detached from my jaw and are irritating the nerves in that area--causing the pain and swelling. The hope was that my body would reject the dead bone tissue, but it's way past the time for that to have happened, so a second surgery is the best option.
So, we are calling Team Mike back into action on October 25 to send Good Vibes for the Debridement Sequel. This one won't be as extensive as the first one, with no teeth to be extracted, but the Good Vibes are needed to help this thing heal once and for all so I can eat food without every bite hurting.
Mike
Tuesday, September 11, 2012
A Light At The End Of The ORN Tunnel
We got some encouraging news from the oral surgeon last week. The pain and swelling in my jaw has gone down with the antibiotics, and he sees some signs that the area is starting to heal. Still a long way to go with the healing, but for the first time he says I am not an impending candidate for jaw replacement surgery.
And if that is the metaphorical light at the end of the tunnel, I can actually SEE that light now! I had my second cataract surgery last week and that went well. So, I've gone from legally blind to 20/20 in both eyes in less than a month.
Terry and I are very thankful for these positive developments and for coming out of a long period of uncertainty with such good news.
As always, our thanks go to Team Mike for your good vibes in whatever form you have sent them in the past year while we dealt with these side effects. Take a well-earned break, and hopefully you won't be called back into action any time soon.
Mike and Terry
And if that is the metaphorical light at the end of the tunnel, I can actually SEE that light now! I had my second cataract surgery last week and that went well. So, I've gone from legally blind to 20/20 in both eyes in less than a month.
Terry and I are very thankful for these positive developments and for coming out of a long period of uncertainty with such good news.
As always, our thanks go to Team Mike for your good vibes in whatever form you have sent them in the past year while we dealt with these side effects. Take a well-earned break, and hopefully you won't be called back into action any time soon.
Mike and Terry
Saturday, August 25, 2012
What a Long, Strange Wait It's Been
You must be getting tired of me telling you that it's more Wait-and see, but that's what's going on with my jaw. They now suspect that the recent pain and swelling are being caused by a bacterial infection, so I was put on a three-week course of antibiotics. Some of the pain and swelling have gone down, which is positive news--but the jaw area is still not healing. The hope is that the lack of healing is due to the infection, so it's more wait-and-see while the antibiotics do their job and I can get another progress report after that.
I did get the right eye cataract replaced three weeks ago, so am still legally blind in my left eye and see 20/20 in my right eye. The left eye gets done on September 5, so please send good vibes that day.
Mike
I did get the right eye cataract replaced three weeks ago, so am still legally blind in my left eye and see 20/20 in my right eye. The left eye gets done on September 5, so please send good vibes that day.
Mike
Thursday, August 9, 2012
Double Header for Team Mike--Need Good Vibes
Today is the first day of a big Double Header for Team Mike to send out some Good Vibes. I have cataract replacement surgery in my right eye this morning and an appointment with my jaw surgeon on Monday, and can use some of your great support from the distance.
The eye doctor tells me that I have cataracts in both eyes, most likely a side effect from corticosteriods I took three years ago to reduce swelling caused by the radiation treatments. The right eye gets done today; the left eye will get done in about a month. I am told that this procedure has a 99.9% success rate, but considering my SFL since this all started, I'm not taking anything for granted.
For a long time I was confident that my jaw was slowly but surely healing from the debridement in April. That's no longer the case. There is an exposed bit of dead bone, and the pain and swelling have increased over the last month. I was hoping that I would get good news at this coming Monday's appointment, but now I'm not so sure. If the wait-and-see time is over on this, I am pretty sure the doctor will tell me I need a left jaw replacement in the near future. But, I still have my fingers crossed that this will turn around, so need your good vibes to help me get some positive news on Monday.
Mike
The eye doctor tells me that I have cataracts in both eyes, most likely a side effect from corticosteriods I took three years ago to reduce swelling caused by the radiation treatments. The right eye gets done today; the left eye will get done in about a month. I am told that this procedure has a 99.9% success rate, but considering my SFL since this all started, I'm not taking anything for granted.
For a long time I was confident that my jaw was slowly but surely healing from the debridement in April. That's no longer the case. There is an exposed bit of dead bone, and the pain and swelling have increased over the last month. I was hoping that I would get good news at this coming Monday's appointment, but now I'm not so sure. If the wait-and-see time is over on this, I am pretty sure the doctor will tell me I need a left jaw replacement in the near future. But, I still have my fingers crossed that this will turn around, so need your good vibes to help me get some positive news on Monday.
Mike
Saturday, July 7, 2012
I Had A Hard Run...But Made It
(Click on the photo to enlarge it)
Running the Peachtree 10K Road Race on the 4th of July is near the top of my Cancer Revenge List every year. I was not able to train very much this year because of the hyperbaric oxygen treatments in late spring and several months of taking pain killers--the combination of which made me very tired. Then, once I had those things behind me, Atlanta became Hot-Lanta in June with record high temperatures, and my training was limited to about 2 early morning runs a week.
The temps had been running consistently near and over 100 since mid-June and we set an all-time high of 106 five days before the Peachtree. Then, the night before the race we had some heavy rain storms that lowered the temps for the morning of the race--even if it did hit 100 later on.
My goal was to run about half the distance and walk the other half. My running partner, Jeff, and I actually ran nearly all of the distance, walking only on the two biggest hills. Of course we had the "Coldest beer of the year" after the race, and then complained only about the t-shirt color this time--the selected front design was quite acceptable.
The rest of the day was a typical fourth of July--which is the whole point of this being on my Cancer Revenge List--to not let the Prairie Dogs intrude on our lives any more than they already have. We came back to our house, had the traditional orange rolls with more post-race beers, took a nap before going out to swim at Damon and Aleisa's, ate some great food, and then came home and took another nap. Two naps in one day--it don't get any better than that!
Two days before the holiday I had a follow up with the doc who did the jaw debridement and got some mixed news. Most of the jaw area is healing but much slower than expected, and he confirmed what I had suspected for a few weeks--I have a piece of exposed bone in that area. He couldn't tell if it was old dead bone just now surfacing (good news), or new dead bone since the debridement (bad news). So, I'm back into another period of wait-and-see what happens with the piece of dead bone and what that might mean for the future.
But for now I'll just enjoy meeting my goals for the Peachtree and having the best uneventful 4th of July a cancer survivor could have.
Mike
Thursday, June 21, 2012
Setting the Record Straight
It seems that my last series of posts caused some alarm among a few of you who take the time to read these things on a regular basis. I really appreciate that some of you come back to check on me every once in a while, so I apologize for any worries I may have caused. I'd promise not to use such heavy sarcasm in the future but that would be a waste of my words and your reading time.
But, now that I have made it through that stretch of hyperbarics, debridement, five months of opiate pain killers, and detox I will honestly say that I had no idea how much all of that had affected me. I was in constant pain, had constant fatigue, was lightheaded a lot, was legally blind, and maybe even hit a stretch of depression from the sum of it all over the last 3+ years.
But now that the pain and meds are in the past, I'm back exercising some, have new eyeglasses, and the fatigue is gone--I'm feeling good again, and back to my normal self--age-adjusted, of course. Just a few weeks ago I thought there would be no way I could even start the Peachtree 10K on July 4th, much less finish it. While I know I can't run the whole distance, I'm sure I'll make it to the finish line to greet Terry, have the celebratory coldest-beer-ever and bitch about the color and design of the race t-shirt with my running partner Jeff.
All of that will remind me yet again that I'll be affected by cancer for the rest of my life--and getting rid of it in my body won't change that fact. The ups and downs of this gig will go on forever and I need to remember to recognize when new challenges happen and to not let them get me down. I have a lot of friends and family who are rooting for me, and a loving wife who will continue to captain Team Mike for many years to come. After this series of setbacks 3+ years after treatments ended, I have no doubt that more will happen and I need to be ready for them when they do.
All I want now is for Terry to be sure enough that I'm OK to switch from plastic knives to our regular ones at home. (Yes, Paully, I'm back)
Mike
But, now that I have made it through that stretch of hyperbarics, debridement, five months of opiate pain killers, and detox I will honestly say that I had no idea how much all of that had affected me. I was in constant pain, had constant fatigue, was lightheaded a lot, was legally blind, and maybe even hit a stretch of depression from the sum of it all over the last 3+ years.
But now that the pain and meds are in the past, I'm back exercising some, have new eyeglasses, and the fatigue is gone--I'm feeling good again, and back to my normal self--age-adjusted, of course. Just a few weeks ago I thought there would be no way I could even start the Peachtree 10K on July 4th, much less finish it. While I know I can't run the whole distance, I'm sure I'll make it to the finish line to greet Terry, have the celebratory coldest-beer-ever and bitch about the color and design of the race t-shirt with my running partner Jeff.
All of that will remind me yet again that I'll be affected by cancer for the rest of my life--and getting rid of it in my body won't change that fact. The ups and downs of this gig will go on forever and I need to remember to recognize when new challenges happen and to not let them get me down. I have a lot of friends and family who are rooting for me, and a loving wife who will continue to captain Team Mike for many years to come. After this series of setbacks 3+ years after treatments ended, I have no doubt that more will happen and I need to be ready for them when they do.
All I want now is for Terry to be sure enough that I'm OK to switch from plastic knives to our regular ones at home. (Yes, Paully, I'm back)
Mike
Friday, June 1, 2012
Some Encouraging News, Some Less So, SFL, and 6 Wonderful Years
My other appointment was with a special opthamologist who examined me for the blurred vision I've had since starting hyperbaric treatments last August. Blurred vision is a common temporary side effect, but mine did not clear up between the two sets of treatments, or since the end of the last set. I joked around for ten months that I was legally blind, and guess what? I am! If they had changed the big "E" at the top of the eye chart to any other letter, I would not have known what it was--so I got that one right. Below that, I couldn't even guess at it.
They did some tests and it looks like I'm at the early stages of developing cataracts in both eyes. The likely cause is corticosteriods given to me to reduce swelling in my neck during the radiation treatments three years ago. Sure enough, my search on the web indicated that this is a known side effect--under the "rare but severe" category. The plan is to get fitted for new glasses ASAP so I can drive again, and then monitor the cataracts' progress. At some point, though, cataract surgery will happen--just a matter of how long into the future.
So, let's take stock here. First I get diagnosed with base of tongue cancer--which unfortunately is not rare anymore. But, my cancer cells are mucoepidermoidal, which are found in less than 5% of these cases. Down the road I develop osteoradionecrosis, which occurs in only about 10% of head/neck cancer patients. For the vast majority of those people, ORN comes and goes one time. Mine is chronic, and so I head into nearly a year's worth of treatments that include the dreaded hyperbarics, two extracted teeth, and a debridement. That series of events appears to be coming to a good ending, but then I'm told yesterday that I have the "rare but severe" side effect of cataracts from meds I took three years back.
So, with those kinds of odds in my life why is it that when I play the lottery I can't get more than one number on any line of my ticket? Well, there's three kinds of luck. Good Luck, Bad Luck, and SFL (it'll come to you), which I appear to have plenty of in the last three years--medically related.
But today is June 1 and the sixth anniversary of the luckiest day in my life--when I married Terry. Without her I would not be alive to write this, or enjoy the many years I expect to have as a cancer survivor.
Mike
Sunday, May 20, 2012
From Debridement to Detox--and the Joke Continues
It's now six weeks since the debridement and the pain in my jaw has practically gone away--enough that I could cut off my pain meds entirely and start to deal with coming out of four+ months of an opiate-induced haze. I had started to wean myself off the Roxicet before my last post, but was advised to slow down on the rate of withdrawal as the detox symptoms got a bit too heavy, too fast. So I waited until Terry and I would be by ourselves at the beach for two full weeks, and gave her the order to "Hide the sharp knives--I'm going to detox the rest of the way, and there's no telling what might happen." Truth be told and thinking the worst, I had some idea that Terry might be the one using the knives, not me. That was a week ago, and I'm happy to report that the detox symptoms were not as severe as I expected--some headaches, a bit of nausea, diarrhea, some insomnia (that's why God made Atavin), some anxiety, and some "restless leg" syndrome. All of those things lasted 3-4 days and I feel like I'm through it. And, the Roxicet bottle is no longer screaming my name in the middle of the night. Now, if only the Jack Daniels bottle would shut up...
But the joke is still not over. Next thing to deal with? Very blurred vision from some unknown combination of aging, and--you guessed it--those freakin' hyperbaric treatments. I don't know the definition of legal blindness, but every time Terry jumps up and says "There's dolphins swimming right off the beach--can you see them?" my reply is "Shit, I can't even see the beach, much less the dolphins." Actually Terry didn't even need to hide the knives--I couldn't have found them if they were right in front of my face.
So, now the list of doctors is going from: family dentist, to oral surgeon1, to oral surgeon2, to ENT, to oncologist, to radiation oncologist, to gastroentronologist, to otorlayryngologist, to oral surgeon3, to a retinal opthamologist specialist who will try to figure out how much of my blurred vision is from natural aging and how much is from side effects from hyperbarics.
But, as always, this "new normal" of a life I have is far better than that "other" option I was facing, and it won't bother me in the least later tonight when I have to ask Terry, "Is that the moon, or Venus we're looking at?" She'll smile at me and say, "Neither, Honey, that's a shrimp boat."
But the joke is still not over. Next thing to deal with? Very blurred vision from some unknown combination of aging, and--you guessed it--those freakin' hyperbaric treatments. I don't know the definition of legal blindness, but every time Terry jumps up and says "There's dolphins swimming right off the beach--can you see them?" my reply is "Shit, I can't even see the beach, much less the dolphins." Actually Terry didn't even need to hide the knives--I couldn't have found them if they were right in front of my face.
So, now the list of doctors is going from: family dentist, to oral surgeon1, to oral surgeon2, to ENT, to oncologist, to radiation oncologist, to gastroentronologist, to otorlayryngologist, to oral surgeon3, to a retinal opthamologist specialist who will try to figure out how much of my blurred vision is from natural aging and how much is from side effects from hyperbarics.
But, as always, this "new normal" of a life I have is far better than that "other" option I was facing, and it won't bother me in the least later tonight when I have to ask Terry, "Is that the moon, or Venus we're looking at?" She'll smile at me and say, "Neither, Honey, that's a shrimp boat."
Wednesday, May 2, 2012
Week 2 of Wait and See, and a vent
It's been two weeks since the debridement so I thought I'd post an update. I had a follow up with the surgeon last Friday between him reading pages in a "100 Years of Fenway Park" souvenir magazine I gave him, telling me that he sees nothing out of the ordinary. Seriously, I knew he went to Harvard Medical School and is a big Sox fan, so I brought this magazine to him to read AFTER my consultation. He was so excited to get it that he was flipping through pages while he was talking with me and Terry. He did put it down long enough to look in my mouth for a minute to check out his handiwork.
The upshoot is that it's way too early to know if the procedure will be successful, but at least there are no early signs to worry about. I do have a rather large hole in my gumline that can accommodate chunks of food that a squirrel would envy--too bad winter is behind us.
The day after the debridement I started 10 more hyperbaric oxygen treatments--and am happy to report that I have the last one tomorrow. After that, I will retire the ol' Secrist 4100-H for good, even if a doctor tells me I need more time in it. I'm convinced that these very expensive and time-consuming treatments are nowhere nearly effective enough to do again. Once tomorrow's 'dive' is over, I will have spent over 100 hours in the chamber, and another 25+ hours in the facility before and after dives. Think about that--it's the equivalent of losing more than 3 WEEKS of work (plus the reported sick time away) while sitting in a glass tube sucking compressed oxygen and watching CNN and Sportscenter. A slacker's dream, but no more for this boy.
While I'm waiting for some sign that the debridement will work (always thinking positive), I'm now looking at my next challenge--withdrawing from 3+ months on a very powerful pain killing medicine. The good news is that my jaw pain is going down--allowing me to take less of the med. The bad news is that as I wean myself off the Roxicet, I'm starting to feel withdrawl effects like sweating, nausea and anxiety.
As the saying goes, "Radiation therapy--the gift that keeps on giving."
Sorry for the vent, folks, but after a while, the f$%^ing joke is over and I'd really like my old life back, so whoever is responsible, I say "Job well done, you really got me--and I'm sorry for whatever I did to piss you off" and please return me to my old bearded, pain free, Cabernet Sauvignon-drinking, food-gulping, grossly over weight self. And when you do that, please also replace the thousands of dollars of over-sized clothes that I gave away when I lost 55 pounds--I'll need them again soon.
Mike
The upshoot is that it's way too early to know if the procedure will be successful, but at least there are no early signs to worry about. I do have a rather large hole in my gumline that can accommodate chunks of food that a squirrel would envy--too bad winter is behind us.
The day after the debridement I started 10 more hyperbaric oxygen treatments--and am happy to report that I have the last one tomorrow. After that, I will retire the ol' Secrist 4100-H for good, even if a doctor tells me I need more time in it. I'm convinced that these very expensive and time-consuming treatments are nowhere nearly effective enough to do again. Once tomorrow's 'dive' is over, I will have spent over 100 hours in the chamber, and another 25+ hours in the facility before and after dives. Think about that--it's the equivalent of losing more than 3 WEEKS of work (plus the reported sick time away) while sitting in a glass tube sucking compressed oxygen and watching CNN and Sportscenter. A slacker's dream, but no more for this boy.
While I'm waiting for some sign that the debridement will work (always thinking positive), I'm now looking at my next challenge--withdrawing from 3+ months on a very powerful pain killing medicine. The good news is that my jaw pain is going down--allowing me to take less of the med. The bad news is that as I wean myself off the Roxicet, I'm starting to feel withdrawl effects like sweating, nausea and anxiety.
As the saying goes, "Radiation therapy--the gift that keeps on giving."
Sorry for the vent, folks, but after a while, the f$%^ing joke is over and I'd really like my old life back, so whoever is responsible, I say "Job well done, you really got me--and I'm sorry for whatever I did to piss you off" and please return me to my old bearded, pain free, Cabernet Sauvignon-drinking, food-gulping, grossly over weight self. And when you do that, please also replace the thousands of dollars of over-sized clothes that I gave away when I lost 55 pounds--I'll need them again soon.
Mike
Wednesday, April 18, 2012
Debridement Done, More Wait and See
The debridement went as well as I could hope for, no complications and no surprises--except for the "Kill me now" pain I felt as I started to wake up in the recovery room. Luckily that was taken care of by two of my old friends from three years ago--Fentanyl and Dilaudid, so it wasn't long before things got more tolerable and I was ready for the second set (think about it, Paully).
Now the waiting starts again in the hopes that my jaw will heal and I can avoid the procedure that will make today look like a walk in the park. We need Team Mike to keep sending your Good Vibes for the next several weeks, so that I'll start to feel some healthy new tissue growing in that area, and the end of ORN will be in sight.
Off to a good start.
Mike
Now the waiting starts again in the hopes that my jaw will heal and I can avoid the procedure that will make today look like a walk in the park. We need Team Mike to keep sending your Good Vibes for the next several weeks, so that I'll start to feel some healthy new tissue growing in that area, and the end of ORN will be in sight.
Off to a good start.
Mike
Friday, April 6, 2012
NED at 3 years...next hurdle in sight
My CT scan showed No Evidence of Disease (NED) which is the lingo for no trace of cancer cells in my body! Terry and I got the great news this morning. That puts me 3 years into remission! The docs will declare me cured of (this) cancer if I go two more years with NED--so more than halfway there!
We'll take some time to celebrate this news, but are already looking at the next hurdle in our path--the debridement for ORN on April 18th. We won't know the success of that for 2-3 months, but I'm told I'll get signs, either way, much sooner.
I won't be scheduled for my next cancer scan for another whole year, but will likely have scans before then to check on my ORN.
Thanks to Team Mike for the Good Vibes on the scan, and please keep them going for the 18th, and beyond. We couldn't have gotten this far without you, and still need your support to get positive results from the debridement procedure.
Mike
We'll take some time to celebrate this news, but are already looking at the next hurdle in our path--the debridement for ORN on April 18th. We won't know the success of that for 2-3 months, but I'm told I'll get signs, either way, much sooner.
I won't be scheduled for my next cancer scan for another whole year, but will likely have scans before then to check on my ORN.
Thanks to Team Mike for the Good Vibes on the scan, and please keep them going for the 18th, and beyond. We couldn't have gotten this far without you, and still need your support to get positive results from the debridement procedure.
Mike
Wednesday, March 28, 2012
New date for debridement, more HBOs, upcoming scan
My debridement has been rescheduled for April 18th, followed the next day by 10 more hyperbaric oxygen (HBO) treatments. So, please bank some Good Vibes and I'll have them warm up the ol' Secrist 4100-H for ten more spins. After that, I'm told it will be 2-3 months until they know for sure if the debridement has worked, but I should have plenty of signs before then.
I have my next cancer scan on April 4th, so throw in some extra Good Vibes for that as well. I'll get those results on April 6th and will post them right away.
Mike
I have my next cancer scan on April 4th, so throw in some extra Good Vibes for that as well. I'll get those results on April 6th and will post them right away.
Mike
Thursday, March 22, 2012
Debridement postponed
I got a call yesterday that today's debridement procedure would be postponed. Apparently the involved doctors were not able to consult to reach a specific operating plan. So, I have a pre-op appointment tomorrow, March 23.
Please use the extra time to bank some Good Vibes for when this does happen--I'll let you know when a new date has been set.
mike
Please use the extra time to bank some Good Vibes for when this does happen--I'll let you know when a new date has been set.
mike
Tuesday, March 20, 2012
Calling on Team Mike
After several weeks of uncertain scheduling, my debridement is on for this Thursday, March 22. The procedure itself is pretty simple and not very intrusive--the doctor will access the area directly, extract one tooth, scrape out any found dead bone, and apply some "liquid nails" to strengthen the remaining bone and promote healing. It's after that when I really need Team Mike to send your Good Vibes--to help that area heal properly, once and for all. The doctor says the success of this procedure should be known in 2-3 weeks. If it works, new gum tissue will grow in that area, my pain will diminish and go away, and it will fully heal gradually. If it doesn't work, the next step will be a resecting of my left mandible, which is a whole different procedure and lengthy recovery scenario that hurts by just describing it--so I won't. If the debridement is a "3" (out of 10), the resecting is a "9" on the pain + recovery time scale, with a long scar as my lasting souvenir.
I'll post after Thursday, but start banking those Good Vibes now and keep them going until the results are known. As always, thanks for your support for what's now been three years. I could not have made it this far without you.
mike
I'll post after Thursday, but start banking those Good Vibes now and keep them going until the results are known. As always, thanks for your support for what's now been three years. I could not have made it this far without you.
mike
Saturday, February 11, 2012
Debridement, not resecting, for now
We met with the oral surgeon on Friday, after a CT scan. After a lot of time, he made a decision to do a debridement (de-breed-ment) of my lower left jaw, not the full resecting. That means he will take out another tooth and then scrape away any dead bone tissue until he gets to healthy tissue, and then cover it with a substance to make the jaw stronger and hopefully promote full healing. This is by far the lesser of the two options in terms of pain and recovery time, so that's good news. However, this procedure does have a moderate failure rate, so there is still a chance that the ORN will continue--and if it does, the only option left is the jaw resecting.
I'll have another 10 hyperbaric treatments after the debridement, which is someone's idea of a very sick joke. At one time I was told I already had a 'lifetime dose' of that treatment, so another round was not an option. Somebody lied and it looks like I'll have to crank up the old Secrist 4100-H for 10 more spins.
There are a lot of factors involved with the scheduling of the debridement, so we don't have a date yet. I will keep everyone posted on the date when we know it. I'll be out of commission for 3-4 days after, and on a mushy/liquid food diet for two weeks or so.
Mike
I'll have another 10 hyperbaric treatments after the debridement, which is someone's idea of a very sick joke. At one time I was told I already had a 'lifetime dose' of that treatment, so another round was not an option. Somebody lied and it looks like I'll have to crank up the old Secrist 4100-H for 10 more spins.
There are a lot of factors involved with the scheduling of the debridement, so we don't have a date yet. I will keep everyone posted on the date when we know it. I'll be out of commission for 3-4 days after, and on a mushy/liquid food diet for two weeks or so.
Mike
Friday, February 3, 2012
Wait and see is over: "Can we play a different game?"
The "Wait and see" strategy has not worked--the socket from the extracted tooth is no better than it was nearly 3 months ago. While it's going to take some time until the next decision gets made, unless some miracle happens, the doctors have agreed that surgery is the only option to get rid of the dead bone in my left jaw. The only question is whether to scrape away the dead bone until they hit healthy bone, or just go directly to a resectioning of my mandible. The reality of the first option is that they might have to scrape away so much dead bone that the resectioning must be done anyway.
I will get a special kind of CT scan done in a week that should give them a good picture of how much dead bone is there, but even that might not be 100% accurate. The only way to know for sure is to go into that area and see it for themselves.
I continue to have a constant, low-level pain in that area that can spike from time to time. Both are manageable with my pain medication.
I'll spare you the details of the jaw surgery until I know the specifics. But, beyond the procedure itself is 5-6 days in the hospital and a lengthy recovery period after that.
In the meantime, please keep sending your Good Vibes to Briah Margolias--the latest word is that she has stabilized--but is still far from being out of the woods.
By the way--New England wins by 7 in the Super Bowl on Sunday.
Mike
I will get a special kind of CT scan done in a week that should give them a good picture of how much dead bone is there, but even that might not be 100% accurate. The only way to know for sure is to go into that area and see it for themselves.
I continue to have a constant, low-level pain in that area that can spike from time to time. Both are manageable with my pain medication.
I'll spare you the details of the jaw surgery until I know the specifics. But, beyond the procedure itself is 5-6 days in the hospital and a lengthy recovery period after that.
In the meantime, please keep sending your Good Vibes to Briah Margolias--the latest word is that she has stabilized--but is still far from being out of the woods.
By the way--New England wins by 7 in the Super Bowl on Sunday.
Mike
Thursday, February 2, 2012
Team Mike REALLY needed for Briah
Briah is one and a half years old and the daughter of one of my former graduate students. A few days ago it was discovered that Briah has a malignant brain tumor. The doctors were able to extract about 95% of the tumor, so some cancer cells still remain. She is not able to breathe on her own and is fighting for her life as I write this to ask Team Mike for its very best Good Vibes for Briah and her parents. The odds of her survival are heavily stacked against her, so she needs every possible kind of support. We have also been told that she must start her chemo treatments right away, which will put additional stress on her body.
Winnie Brown started her radiation treatments about 10 days ago, so she also needs some of your Good Vibes. From what we are being told, she is doing OK with the treatments so far. Her challenge will increase over the course of the treatments as the pain and discomfort get notched up.
As for me, some of my 'wait and see' ends today with an appointment with the best jaw ORN in ATL. I'll post an update later today or tomorrow. In the meantime, PLEASE send your best Good Vibes to Briah--she needs them much more than me.
Mike
Winnie Brown started her radiation treatments about 10 days ago, so she also needs some of your Good Vibes. From what we are being told, she is doing OK with the treatments so far. Her challenge will increase over the course of the treatments as the pain and discomfort get notched up.
As for me, some of my 'wait and see' ends today with an appointment with the best jaw ORN in ATL. I'll post an update later today or tomorrow. In the meantime, PLEASE send your best Good Vibes to Briah--she needs them much more than me.
Mike
Thursday, January 12, 2012
Good News/Possible Bad News, More Wait and See
It's been an eventful last month dealing with the osteoradionecrosis (ORN) in my left jaw. It started a few months before that with increasing pain that eventually radiated from my jawline to my temple. The problem was being caused by slow healing of the bare socket made by the tooth extraction in October. Healing that should have been complete in 4-6 weeks had barely started more than 10 weeks later, and the pain got worse with each week.
Right after Christmas I felt a bony 'bump' in the socket and thought that another ulcer had opened up. While using a water pic a few days later, a sizable shard of dead bone came out of the socket, and the pain immediately started to subside. That was the good news.
I saw the oral surgeon earlier this week and caught her up on things, thinking she would be happy about those developments. Mixed reaction. She was happy that my pain level had gone down a lot, but the slow rate of healing is still very much a concern. New gum tissue can't grow over dead bone tissue, so she thinks there's still a good chance that I have more dead bone in my jaw. That's the possible bad news.
I have an appointment the first week in February with the best doctor in ATL for jaw ORN. He'll take new scans and then decide whether to: 1) wait more to see what happens, 2) go in and scrape out any dead bone he can find, or 3) do some type of resection (take out a chunk of the jaw and replace it with a metal plate or bone tissue from another part of my body).
So, on with more wait and see, with the odds of this healing on its own still at about 50/50. I can say that I am a lot more comfortable than I've been for 3-4 months, now that the bone shard worked its way out of the socket--so at least the wait is not a painful one anymore. I can now use my Roxicet for recreational purposes and watching Republican Presidential debates, not pain relief. Just kidding.
I do have an update on our friend, Winnie. She is getting fitted for a head and shoulder mask that keeps her completely still during the radiation sessions. My own experience with that was nothing short of a "white knuckle" claustrophobic reaction that required me to be medicated for the first two weeks or so of the treatments. As my tumor started to shrink, it got a bit better, but my heart raced every time they put that thing on and buckled it into the table. Well, Winnie is also claustrophobic, so she is going to need lots of Good Vibes to help her through this. Please do that for her.
I'll continue to report on my situation when the "wait and see" is over and the next course of treatment is determined.
Mike
Right after Christmas I felt a bony 'bump' in the socket and thought that another ulcer had opened up. While using a water pic a few days later, a sizable shard of dead bone came out of the socket, and the pain immediately started to subside. That was the good news.
I saw the oral surgeon earlier this week and caught her up on things, thinking she would be happy about those developments. Mixed reaction. She was happy that my pain level had gone down a lot, but the slow rate of healing is still very much a concern. New gum tissue can't grow over dead bone tissue, so she thinks there's still a good chance that I have more dead bone in my jaw. That's the possible bad news.
I have an appointment the first week in February with the best doctor in ATL for jaw ORN. He'll take new scans and then decide whether to: 1) wait more to see what happens, 2) go in and scrape out any dead bone he can find, or 3) do some type of resection (take out a chunk of the jaw and replace it with a metal plate or bone tissue from another part of my body).
So, on with more wait and see, with the odds of this healing on its own still at about 50/50. I can say that I am a lot more comfortable than I've been for 3-4 months, now that the bone shard worked its way out of the socket--so at least the wait is not a painful one anymore. I can now use my Roxicet for recreational purposes and watching Republican Presidential debates, not pain relief. Just kidding.
I do have an update on our friend, Winnie. She is getting fitted for a head and shoulder mask that keeps her completely still during the radiation sessions. My own experience with that was nothing short of a "white knuckle" claustrophobic reaction that required me to be medicated for the first two weeks or so of the treatments. As my tumor started to shrink, it got a bit better, but my heart raced every time they put that thing on and buckled it into the table. Well, Winnie is also claustrophobic, so she is going to need lots of Good Vibes to help her through this. Please do that for her.
I'll continue to report on my situation when the "wait and see" is over and the next course of treatment is determined.
Mike
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