We have about 10 days left in New Zealand and have pretty much finished our touring of the South Island. Check the NZ blog for lots of great pictures and some stories about our travels here. We'll spend the home stretch in Christchurch, seeing more of the city, and checking our long shopping lists of souvenirs for those of you back home.
Since Trophy Shard II came out my pain has gradually come down to where I can eat a few different kinds of foods. I have good and bad days, but more good ones lately. The Kiwi Oxycodone has worked so well that I've not taken my other pain med in over two weeks. That also means fewer daytime naps.
So, barring some freak accident the trip will end on a medical upbeat, and we win our gamble on getting here and staying for the entire 9 weeks.
But, this is Cancer World, so even when life's on easy street, there's danger at the door. Every day brings us one day closer to May 1 and that is now creeping into our future plans ever so steadily. We'll have a whirlwind of activity once we get home and the 22 days from touchdown in ATL to "Mr. Metzler, please start at 99 and count down as far as you can..." will fly by.
We heard that Maureen Vellia's surgery went well--clear margins and no surprises. She is in recovery at Northside Hospital for 3-5 days then home for the next stage of her treatments--the infamous "Gifts that keep on giving"--chemo and radiation. Please keep the Team Mike Good Vibes going for her--she still has a big struggle ahead in many ways.
Mike
Thursday, March 27, 2014
Sunday, March 23, 2014
A good friend gets bad news...
I subscribe to the Head/Neck Cancer board on the Cancers Survivors' Network (CSN). I found CSN about two years after completing my treatments and it has been a great source of friendships, information, and support for the past 3+ years. I read it about 4-5 times a week and post to it periodically. From my posts about my emerging problem with ORN two years ago, I started to communicate with Pat, who had the same original cancer as me, and two recurrences since, but had managed to survive for over 14 years since his first diagnosis. His name on CSN is "Longtimesurvivor." Key word two sentences ago: had. He wrote to me yesterday that he's had a third recurrence--this time it can't be treated or cured. He has not been given a timeline yet, but his cancers have been fast-growers--this one came totally undetected by him in the last two months.
From the distance Pat has been a mentor to me as my ORN developed. He did not have ORN, but did go through a procedure similar to my upcoming jaw replacement, so he could talk from much experience. I think he has a medical background--he knows way more about cancer and its treatment that could be taken from personal experience alone. He has provided many people on CSN with authoritative answers to the many questions we all have about Cancer World.
Pat is a former world traveler, hunter, backpacker, and SCUBA diver--still hiking until just a short time ago. He and I shared some stories about SCUBA diving, and he offered to send me a special mouth-hydrating device in the event I am cleared again to dive.
I had it in my mind that Pat and I would get to meet in person one day, so I never felt the need to know more of the details about his life, his cancer experiences, and his stories about New Zealand--he hunted NZ several years ago, and I am in NZ right now, so that gave us another bond in recent weeks. As I pondered my options about coming to NZ now or waiting until the jaw procedure was over and healed, Pat was very clear--I can get my jaw replaced any time, but this opportunity in NZ was one-off, "So get your asses on the plane and worry about later, later."
My mind tells me to be really angry and sad that Pat has lost his long battle and I am losing one of the cornerstones in my own battle with the Prairie Dogs and their side-kicks, chemo and radiation therapy. I really wish I could come up with a reason to rant and rave over Pat's impending death and my loss of a friend--but I can't, so that void is being filled for now with the numbing realization that anger will not solve anything, and that I need to stay focused on the rest of our time in NZ and my upcoming procedure--just as Pat would tell me to do.
mike
Tuesday, March 11, 2014
Update from Kiwi Land
On the weekends we usually rent a car and head out to tour the South Island. Last weekend we went to Kaipoura, a small peninsula about 3 hours north. The photo above shows one of the views from the front porch of our rented bungalow. That view didn't last too long, as the clouds moved in to obscure the Southern Alps--but we did have a great time seeing some wonderful sights, including a pod of sperm whales from a high vantage point on land.
Tomorrow we head back north, this time another hour and a half further to Picton, in the wine country. Next week, over the Southern Alps to the West to see the Tasman Sea coast and some of "wild" NZ. After that it will be time to think about heading home, leaving NZ on April 7th.
Even in the middle of such a wonderful trip, Cancer World goes on and lingers in the background. We have not heard directly from Maureen Vellia, but have been told her second opinion doc confirmed the need for surgery, which is scheduled for March 26. That's when her world gets turned upside down--having to stop her practice--and her income--and having to concentrate on her recovery. Please, please, send her all the Good Vibes you can before and after her surgery--she will need every bit of support she can get.
Lingering in our background, of course, is my jaw surgery on May 1. My pain level has dropped a little since Trophy Shard II popped out, but Vicodin is still my best friend on a daily basis. I'm able to eat a little wider range of food, but not much, and I'm still extra slow at chewing and swallowing.
But, since I've received no Care Package of Vicodin from Team Mike, I've had to use the local medical system to make sure I can continue to make it through the days here. Funny thing--Vicodin is not even recognized here, and hydrocodone is not allowed, so my new best friend will soon be...
...Oxycodone!
Eat yer heart out, Harv.
Yes, one of the most abused and illegially-trafficed drugs in the US is readily available in NZ, which would explain why people here are so mellow, watch a lot of The Shopping Channel, and the national blood pressure is about 100/60.
To be honest, this is not good news because it means I have to introduce a new drug into my daily routine and be extra careful to monitor any side effects that differ from the Vicodin. And, my past two de-tox's from Oxy were not walks in the park. But, I'll deal with that when the time comes. In the meantime I will be comfortable for the last 3+ weeks in NZ, and be able to re-stock my wardrobe with great deals from The Shopping Channel.
mike
Thursday, February 27, 2014
Doug Sommer, Rest In Peace
Doug's final battle with cancer did not last long. He passed away on Thursday, February 27 (US time). Please send some Good Vibes to his wife, Phyllis and their families.
Mike
Mike
Wednesday, February 26, 2014
Maureen, Doug, and Mike
This will serve as a bit of an update on Maureen Vellia, Doug Sommer, and me--as you will see it's a mixed bag, and cancer still sucks.
We don't have an update on Maureen's health status, but did hear that the fund raising event went well and brought in more money than expected. There will be more events soon, so hopefully some of the ATL folks can come out for one of them.
I mentioned a little while back that Doug Sommer (my sister's next door neighbor) had prostate cancer and was fighting for his life with it. Marie tells me now that Doug has lost the fight, and is in terminal hospice care at his home. He is expected to live for only another week, maybe two. I only met Doug and his wife Phyllis a few times, but could tell that he was was a great guy, a loving husband, and wonderful father to their two kids. You can learn more about Doug here:
http://www.atlantasymphony.org/About/Artists/ASO-Musicians/Douglas-Sommer.aspx
He was a professional musician, playing bass in the Atlanta Symphony Orchestra, and teaching lessons to lots of kids over the years. Please send your best Team Mike Good Vibes to Doug and Phyllis so that his remaining days can be pain-free and peaceful.
The rest of this posting comes with one of those warnings that
"The following content contains gross and yucky descriptions...squeamish readers might want to exit here or refresh their cocktail while others proceed."
About six months ago I detected another large fragment of dead bone making its way to the surface in my mouth. I predicted that it would take about six months for the whole process to complete. Almost exactly on schedule, it did that yesterday. As you know, my pain level recently spiked and I found it difficult to eat, drink, and even swallow water. After taking a dose of pain meds and the resulting nap, I did my weekly thing of poking around in my mouth with one finger, to feel any new developments in there. I immediately felt the sharp exposed edges of a bone fragment, and could tell it was a biggun'--maybe another "Trophy Shard." I was able to wiggle it, and sure enough, it started to come loose--like when a kids' tooth starts to come out. After a few wiggles, I heard a little "pop", which was the fragment being fully dislodged from my jaw. What came out was "Trophy Shard II", a disk-shaped piece, about 3/8 inches in diameter--jagged and very nasty looking. It hurt just to look at it, knowing it had been wreaking havoc in my mouth for so long.
As when Trophy Shard I came out, the pain level in my jaw went down immediately, to about half of what it's been lately. Still running about a steady 3, but a very welcome change after the 6-7 it's been for the last 6 weeks. It still hurts to chew and I'm still limited to soft foods, but I can now swallow pain-free, which allows me to eat more at one sitting.
Now, that does not mean Team Mike is off the hook for those Vicodins I mentioned last time. It's too soon to know my new rate of daily consumption, and if I have enough to get me home--so keep trying to find some to send to me in NZ. Just so you know, I'm keeping track...
Mike
We don't have an update on Maureen's health status, but did hear that the fund raising event went well and brought in more money than expected. There will be more events soon, so hopefully some of the ATL folks can come out for one of them.
I mentioned a little while back that Doug Sommer (my sister's next door neighbor) had prostate cancer and was fighting for his life with it. Marie tells me now that Doug has lost the fight, and is in terminal hospice care at his home. He is expected to live for only another week, maybe two. I only met Doug and his wife Phyllis a few times, but could tell that he was was a great guy, a loving husband, and wonderful father to their two kids. You can learn more about Doug here:
http://www.atlantasymphony.org/About/Artists/ASO-Musicians/Douglas-Sommer.aspx
He was a professional musician, playing bass in the Atlanta Symphony Orchestra, and teaching lessons to lots of kids over the years. Please send your best Team Mike Good Vibes to Doug and Phyllis so that his remaining days can be pain-free and peaceful.
The rest of this posting comes with one of those warnings that
"The following content contains gross and yucky descriptions...squeamish readers might want to exit here or refresh their cocktail while others proceed."
About six months ago I detected another large fragment of dead bone making its way to the surface in my mouth. I predicted that it would take about six months for the whole process to complete. Almost exactly on schedule, it did that yesterday. As you know, my pain level recently spiked and I found it difficult to eat, drink, and even swallow water. After taking a dose of pain meds and the resulting nap, I did my weekly thing of poking around in my mouth with one finger, to feel any new developments in there. I immediately felt the sharp exposed edges of a bone fragment, and could tell it was a biggun'--maybe another "Trophy Shard." I was able to wiggle it, and sure enough, it started to come loose--like when a kids' tooth starts to come out. After a few wiggles, I heard a little "pop", which was the fragment being fully dislodged from my jaw. What came out was "Trophy Shard II", a disk-shaped piece, about 3/8 inches in diameter--jagged and very nasty looking. It hurt just to look at it, knowing it had been wreaking havoc in my mouth for so long.
As when Trophy Shard I came out, the pain level in my jaw went down immediately, to about half of what it's been lately. Still running about a steady 3, but a very welcome change after the 6-7 it's been for the last 6 weeks. It still hurts to chew and I'm still limited to soft foods, but I can now swallow pain-free, which allows me to eat more at one sitting.
Now, that does not mean Team Mike is off the hook for those Vicodins I mentioned last time. It's too soon to know my new rate of daily consumption, and if I have enough to get me home--so keep trying to find some to send to me in NZ. Just so you know, I'm keeping track...
Mike
Sunday, February 23, 2014
Brother, Can You Spare a Vicodin?
We did some touring this weekend to a central Canterbury town called Lake Tekapo, with ice-blue lakes, Mount Cook, and some of the best start gazing in the world. We were not disappointed. The weather was great, Mount Cook was humbling, and the skies gave us the Milky Way ,the Southern Cross, and a few pulsing strands of the Aurora Australis--Antarctic's version of the Northern Lights. Terry stayed up late one night, and woke in the middle of the next night to see a few glimpses of the lights--very rare for this time of year. Even without the lights, the sky was magnificent--the lights were just some cosmic gravy for us.
So, we are back in Christchurch for the coming week, and then off again next weekend--no decisions yet on that.
But we are facing the need to add to my Vicodin stash. My added pain and swelling has put me over the daily estimate of what the doctors calculated I would need, so if it keeps on this schedule, I will run out with about two weeks left here. So, I am calling on Team Mike to find a local pill mill in your town, and convince a sympathetic doctor that you need some Vicodin to take care of your "pain." Hurt yourself if you need to--I don't care. Be sure to specify that you need Vicodin ES 7.5-300. No generics. And know that I'll count them on arrival to make sure you didn't take a few off the top for yourself.
Once you score, please send them to "Jerry Garcia" at 2-50 Kirkwood Drive, Riccarton, Christchurch, NZ. Like Team Mike has done so many times in the past, I know that you'll come through again.
Mike
So, we are back in Christchurch for the coming week, and then off again next weekend--no decisions yet on that.
But we are facing the need to add to my Vicodin stash. My added pain and swelling has put me over the daily estimate of what the doctors calculated I would need, so if it keeps on this schedule, I will run out with about two weeks left here. So, I am calling on Team Mike to find a local pill mill in your town, and convince a sympathetic doctor that you need some Vicodin to take care of your "pain." Hurt yourself if you need to--I don't care. Be sure to specify that you need Vicodin ES 7.5-300. No generics. And know that I'll count them on arrival to make sure you didn't take a few off the top for yourself.
Once you score, please send them to "Jerry Garcia" at 2-50 Kirkwood Drive, Riccarton, Christchurch, NZ. Like Team Mike has done so many times in the past, I know that you'll come through again.
Mike
Friday, February 14, 2014
This is How Cool New Zealand is
Terry and I arrived in New Zealand just about two weeks ago now. In that time we have been busy settling into our nice apartment right off the University of Canterbury campus, learning our way around Christchurch, doing a bit of local touring, and spending five days in Auckland at a conference. We are now back in CC and will be here for the rest of our stay, except for some planned excursions on the South Island, and maybe one on the North Island.
The picture above was taken at the Hilltop Tavern, overlooking Akaroa Bay and the small village of Akaroa (be sure to hover over the image and enlarge it to max size).. Built in the late 1800's as a mid-point hotel between CC and Akaroa, it has now become one of the most scenic watering holes on the planet. I was there in 2000 and knew that it would blow Terry's socks off, so made sure we got a great seat for her first visit. The beanbags came available and we spent about an hour in them, soaking in the sun and scenery, which included a cute billie goat that clearly knew how to sucker food from guests. Too bad for the goat, but we only had drinks.
It seems like every day has brought something in the category of spectacular, whether it's been scenery like this (yes, there is more--lots more), meeting the great Kiwi people, seeing new birds, or just being happy that we missed the second Ice Storm of the Century in Atlanta a few days ago. Thank you, Charlotte NC for letting ATL's time as the laughing stock of the South last only a few weeks.
So, other than rubbing it in ("We're here and yer not"), what's the point of this post? Well, just as they have for the last 5+ years, the Prairie Dogs are showing their ugly heads when we try to enjoy some return to normalcy in our lives. We knew we were taking a calculated risk to go this far from home for such a long time--sort of racing the ORN clock, hoping to get home before the jaw replacement surgery becomes necessary. My pain and swelling have escalated again and eating any food that requires chewing is now out of the question. Terry eats a big, fat lamb burger, I eat soup. 600 people around me at a local sports award banquet eat tender steaks last night, I get a double helping of mashed potatoes. Terry eats a grilled cheese sammy, I drink a bad NZ "Boost"-imitation product, that makes me long for...well, real Boost. You get the idea.
On the optimistic side, this is not the Prairie Dogs returning, so don't worry about that. This is just the latest installment of the twin "Gifts that keep on giving"--the continued progression of side effects from chemo + radiation five years ago.
Last night at the banquet our host, Ian, asked me why I would come to NZ, knowing the pain levels and food restrictions I would be facing here. I just shrugged my shoulders and said, "Because it's New Zealand--if this were any other opportunity, I would have stayed home and waited for the surgery to happen." That got his attention, and appreciation, I think.
I have made a promise to myself and Terry that I would make every effort to fight cancer. Five years ago, I was doing that every minute of every day. Now, the fight is against the continued side effects from treatments, and the ORN surgical "clock." Terry made a comment the other day that this is looking and feeling like my treatment period did five years ago. She's right, and that helped me to put it into perspective. It sucks, but that's what it is.
In the end, no one BEATS head/neck cancer--with its long list of side effects, the best you can do is SURVIVE it, and keep plugging along, looking for things in life to enjoy--like having a beer while sitting on a bean bag chair at the Hilltop Tavern in New Zealand.
Mike
Thursday, January 30, 2014
NZ Blog and Musings on the Super Bowl
In case you are interested, here is the address for our NZ blog:
http://miketerrynz2014.blogspot.com/
We'll start posting shortly after we arrive in Christchurch and recover from the long flights. We arrive a few hours before the Super Bowl starts, so hope to be awake for that--if it can even be watched there.
FYI, in NZ they call it, "The no-one-gives-a-shit.com Bowl" because a) it's not rugby, and b) they don't understand the commercials, even the funny ones.
My hope is that it a) snows a foot during the game, b) ends in a 0-0 tie after five quarters in sub-zero temps, and c) Bruno Mars has the male version of a wardrobe malfunction during the halftime show.
After watching ATL kneel to the weather Gods this week, I wish the same for the NFL for even thinking they can have a Super Bowl in NJ/NY in February and get away with it--after declaring Atlanta too cold for another game here in the future.
Mike
http://miketerrynz2014.blogspot.com/
We'll start posting shortly after we arrive in Christchurch and recover from the long flights. We arrive a few hours before the Super Bowl starts, so hope to be awake for that--if it can even be watched there.
FYI, in NZ they call it, "The no-one-gives-a-shit.com Bowl" because a) it's not rugby, and b) they don't understand the commercials, even the funny ones.
My hope is that it a) snows a foot during the game, b) ends in a 0-0 tie after five quarters in sub-zero temps, and c) Bruno Mars has the male version of a wardrobe malfunction during the halftime show.
After watching ATL kneel to the weather Gods this week, I wish the same for the NFL for even thinking they can have a Super Bowl in NJ/NY in February and get away with it--after declaring Atlanta too cold for another game here in the future.
Mike
Wednesday, January 22, 2014
T-minus 9 days
Kia Ora! (Maori phrase for "Hey, y'all")
In 9 days from right now Terry and I will be on a flight, somewhere between Los Angeles and Auckland, NZ, on our way to Christchurch, NZ, where we'll live for 9 weeks. It is hard to believe that it's nearly right around the corner. While we still have to finish planning our packing, we have done well to cross things off the to-do list, and should be able to avoid any undue stress as we get ready to leave. We'll have about a week in Christchurch to get settled in, before we go to a conference in Auckland for 5 days. When we return to CC we'll be in full Kiwi mode that will take us up to April 8. I'll post here for any health-related news, and you can check our NZ Blog for pictures and stories on other events. I'll post the blog address before we leave.
The last 2-3 weeks have been tough--one last bitch-slap from the Prairie Dogs to remind us that while we can go halfway around the world on the trip of our lives, we can never escape this far-reaching disease and its after effects once and for all. The pain and swelling in my left jaw has been a constant 6-8 on that 1-10 scale the doctors use to gauge it. Even with meds, it doesn't go below a 4 at any time. A small bone shard popped out about 10 days ago. And, the trismus has ratcheted up (or down, as it goes) to the point that I am now on about an 80% liquid diet. Eating anything with a fork or spoon is a struggle, usually ending up with a painful shriek, food stuck on my chin, and dropped food on my lap. (I know, I know--many of you have seen two out of those three lots of times).
If it were any other opportunity in my life, I would postpone the trip to NZ and have the surgery done right now. But, the reality is that my recovery is going to be almost a full year, and I'm afraid that I might never be able to go if I have the procedure before heading to NZ. So, but for the grace of God, and with a bagful of Schedule 1 narcotics, there go I and Terry. For now, it looks like our calculated gamble is working--the ORN is progressing, but slowly enough to get us home in time for the May 1 surgery.
We have not heard anything new about Maureen Vellia, but will see her before we leave and give you an update.
Mike
In 9 days from right now Terry and I will be on a flight, somewhere between Los Angeles and Auckland, NZ, on our way to Christchurch, NZ, where we'll live for 9 weeks. It is hard to believe that it's nearly right around the corner. While we still have to finish planning our packing, we have done well to cross things off the to-do list, and should be able to avoid any undue stress as we get ready to leave. We'll have about a week in Christchurch to get settled in, before we go to a conference in Auckland for 5 days. When we return to CC we'll be in full Kiwi mode that will take us up to April 8. I'll post here for any health-related news, and you can check our NZ Blog for pictures and stories on other events. I'll post the blog address before we leave.
The last 2-3 weeks have been tough--one last bitch-slap from the Prairie Dogs to remind us that while we can go halfway around the world on the trip of our lives, we can never escape this far-reaching disease and its after effects once and for all. The pain and swelling in my left jaw has been a constant 6-8 on that 1-10 scale the doctors use to gauge it. Even with meds, it doesn't go below a 4 at any time. A small bone shard popped out about 10 days ago. And, the trismus has ratcheted up (or down, as it goes) to the point that I am now on about an 80% liquid diet. Eating anything with a fork or spoon is a struggle, usually ending up with a painful shriek, food stuck on my chin, and dropped food on my lap. (I know, I know--many of you have seen two out of those three lots of times).
If it were any other opportunity in my life, I would postpone the trip to NZ and have the surgery done right now. But, the reality is that my recovery is going to be almost a full year, and I'm afraid that I might never be able to go if I have the procedure before heading to NZ. So, but for the grace of God, and with a bagful of Schedule 1 narcotics, there go I and Terry. For now, it looks like our calculated gamble is working--the ORN is progressing, but slowly enough to get us home in time for the May 1 surgery.
We have not heard anything new about Maureen Vellia, but will see her before we leave and give you an update.
Mike
Tuesday, January 14, 2014
Cancer Strikes Close Again
Terry and I have been seeing a great chiropractor for several years--Maureen Vellia, who has become a good friend to both of us, especially Terry. Maureen helped Terry with her two scarecrows this past fall for the contest at the ATL Botanical Gardens. About two weeks ago Maureen revealed to Terry that she has advanced colon cancer and is currently undergoing treatment. We are stunned by this news.
Maureen is one of those people who lives a very clean and healthy life. She is almost a total vegetarian, exercises regularly, doesn't smoke, rarely drinks alcohol, and does other things that she herself recommends to her patients. It's just not fair that she should get this horrible disease.
Terry went by Maureen's office today to drop off some homemade soup. Maureen was taking a nap on her treatment table, between patients, due to her fatigue from the chemo+radiation. That Maureen is still seeing patients during all of this shows her dedication to the health of others.
We are asking Team Mike to send your very best Good Vibes to Maureen so that she can stay strong through her treatments, and more importantly that they work.
Terry and I can count almost 15 friends and family whose lives have been affected or taken by cancer since my own diagnosis five years ago. All of them hit close to home, but this one hurts a lot because Maureen is a healer, and it's not just her life that is being affected when she can't continue to put in her usual long-hour days. She has been a godsend to both of us many times when we could not have functioned without her knowledge and skills.
On the local front, we got confirmation today that May 1 will be the date for the jaw resecting--and in the nick of time. I am having one of those periods of increased pain, swelling, restricted jaw movement, and dead bone loss. Three days ago, two small bone shards popped out, and it feels like more will follow. If we were going someplace else other than New Zealand (say, Cleveland) for nine weeks, I would have the procedure tomorrow. In the meantime I think I can make it to May 1 with vicodin, gabapentin, antibiotics, and atavin--all washed down twice daily with a nice New Zealand Pinot Noir. You know--dirty work, but someone has to do it.
We will post here while in NZ, and on our Kiwi blog, so stop in from time to time, and please send your best Good Vibes to Maureen.
Mike
Maureen is one of those people who lives a very clean and healthy life. She is almost a total vegetarian, exercises regularly, doesn't smoke, rarely drinks alcohol, and does other things that she herself recommends to her patients. It's just not fair that she should get this horrible disease.
Terry went by Maureen's office today to drop off some homemade soup. Maureen was taking a nap on her treatment table, between patients, due to her fatigue from the chemo+radiation. That Maureen is still seeing patients during all of this shows her dedication to the health of others.
We are asking Team Mike to send your very best Good Vibes to Maureen so that she can stay strong through her treatments, and more importantly that they work.
Terry and I can count almost 15 friends and family whose lives have been affected or taken by cancer since my own diagnosis five years ago. All of them hit close to home, but this one hurts a lot because Maureen is a healer, and it's not just her life that is being affected when she can't continue to put in her usual long-hour days. She has been a godsend to both of us many times when we could not have functioned without her knowledge and skills.
On the local front, we got confirmation today that May 1 will be the date for the jaw resecting--and in the nick of time. I am having one of those periods of increased pain, swelling, restricted jaw movement, and dead bone loss. Three days ago, two small bone shards popped out, and it feels like more will follow. If we were going someplace else other than New Zealand (say, Cleveland) for nine weeks, I would have the procedure tomorrow. In the meantime I think I can make it to May 1 with vicodin, gabapentin, antibiotics, and atavin--all washed down twice daily with a nice New Zealand Pinot Noir. You know--dirty work, but someone has to do it.
We will post here while in NZ, and on our Kiwi blog, so stop in from time to time, and please send your best Good Vibes to Maureen.
Mike
Tuesday, December 24, 2013
Guess What I Got for Christmas?
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
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
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
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