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
Sunday, September 15, 2013
Monday, August 26, 2013
Decision time on jaw resecting
I had a PET scan last week which confirmed that the ORN is still progressing. No need to tell me that after a new bone shard came out and I found another area of exposed bone in the back of my jaw. So the discussion is no longer about if I'll need the jaw resecting, it's about when it will happen. We spent a lot of time today with the oral surgeon who gave us a lot of information and answered a lot of questions.
We have decided to wait until after we return from New Zealand to do the procedure--unless of course some emergency happens in the meantime, and this needs to get done right away. The decision was based on a lot of factors, most importantly the amount of time needed to recover after the surgery, and the number of days I will need to miss from work for that. The conservative estimate is 4-6 weeks, but it could easily be longer. If I have the procedure soon, I would miss the rest of this semester and likely run out of paid sick days by then. If I can mange to wait until we get back from NZ, I would miss only about the last two weeks of spring semester, and then have several more weeks to recover over the summer, without using too many sick days.
So, we are taking a measured gamble that I can hold off until April, and manage to avoid any dramatic progression of the ORN or emergency situations between now and when we get back from NZ. But if the shit hits the fan at any time before then, we go into full resecting mode with no questions and figure out the rest from there.
As you may recall, I've described three levels of luck over the last 4+ years in my battle with the Prarie Dogs: good luck, bad luck, and S***** F***KING Luck (SFL). My record shows a long and consistent pattern of SFL, but maybe this time I can turn that around and we can have a wonderful but uneventful (ORN wise) stay in NZ. That's where Team Mike comes in--rather then needing your Good Vibes to get me through another acute episode, I need them to keep me from having an emergency before the jaw surgery happens in April.
I will admit that the thought of this procedure scares the hell out of me. It is not life threatening like the battle with cancer in 2009, but nothing about this will be simple, easy, or pain-free--and I'll need to go back into that zone of coping with pain, meds, liquid diet, etc. until I can come out on the other side of this. All in all, I'd rather be in Western New York State in the dead of winter, wearing nothing but shorts, a t-shirt, and flip flops, sitting in Rich Stadium watching the Bills lose to a local high school team.
Mike
We have decided to wait until after we return from New Zealand to do the procedure--unless of course some emergency happens in the meantime, and this needs to get done right away. The decision was based on a lot of factors, most importantly the amount of time needed to recover after the surgery, and the number of days I will need to miss from work for that. The conservative estimate is 4-6 weeks, but it could easily be longer. If I have the procedure soon, I would miss the rest of this semester and likely run out of paid sick days by then. If I can mange to wait until we get back from NZ, I would miss only about the last two weeks of spring semester, and then have several more weeks to recover over the summer, without using too many sick days.
So, we are taking a measured gamble that I can hold off until April, and manage to avoid any dramatic progression of the ORN or emergency situations between now and when we get back from NZ. But if the shit hits the fan at any time before then, we go into full resecting mode with no questions and figure out the rest from there.
As you may recall, I've described three levels of luck over the last 4+ years in my battle with the Prarie Dogs: good luck, bad luck, and S***** F***KING Luck (SFL). My record shows a long and consistent pattern of SFL, but maybe this time I can turn that around and we can have a wonderful but uneventful (ORN wise) stay in NZ. That's where Team Mike comes in--rather then needing your Good Vibes to get me through another acute episode, I need them to keep me from having an emergency before the jaw surgery happens in April.
I will admit that the thought of this procedure scares the hell out of me. It is not life threatening like the battle with cancer in 2009, but nothing about this will be simple, easy, or pain-free--and I'll need to go back into that zone of coping with pain, meds, liquid diet, etc. until I can come out on the other side of this. All in all, I'd rather be in Western New York State in the dead of winter, wearing nothing but shorts, a t-shirt, and flip flops, sitting in Rich Stadium watching the Bills lose to a local high school team.
Mike
Saturday, July 27, 2013
...and the shin bone's connected to the...jaw bone?
About two weeks ago the oral surgeon told me that jaw replacement surgery (Mandibular resecting) is now inevitable. His first thought was that it would need to happen sooner, not later. But after he did a more thorough examination and reviewed the CT scan I had done in April, he is now predicting that I have 6 months to 2 years before this will become necessary.
The ORN is still progressing, and the scan showed more dead bone tissue in that area--so I'll have more events like the most recent one at the beach. Right now the daily pain level is manageable without regular meds, but every once in a while I need something for breakthrough pain. The bigger concern is a growing area of numbness that means the nerve on that side has become involved--that's what's making the resecting inevitable.
You can Google 'mandibular resecting' to see what this will entail. There are two options--but both start with taking out about four inches of my left jaw. Option one is to replace it with a titanium plate. Option two is to take out a piece of my shin bone, sculpt it to the shape of the removed bone, and then graft that in as my new jaw. This option is more desirable because the new jaw will have its own blood supply...and I won't set off alerts at the airport when I go through TSA security. So, unless things change, my shin bone WILL be connected to my jaw bone sometime in the future.
I'll spare you the rest of the details on this procedure until "inevitable" becomes "imminent." Now knowing that it will happen, we have our fingers crossed that it can wait until we come back from New Zealand in April. We will be living there for 10 weeks while I am a visiting professor at the University of Canterbury. In the meantime I am monitoring my symptoms closely and being careful not to have an accident that could fracture my deteriorated left jaw. If that were to happen, "inevitable" would become "immediate."
We'll keep you posted.
Mike
The ORN is still progressing, and the scan showed more dead bone tissue in that area--so I'll have more events like the most recent one at the beach. Right now the daily pain level is manageable without regular meds, but every once in a while I need something for breakthrough pain. The bigger concern is a growing area of numbness that means the nerve on that side has become involved--that's what's making the resecting inevitable.
You can Google 'mandibular resecting' to see what this will entail. There are two options--but both start with taking out about four inches of my left jaw. Option one is to replace it with a titanium plate. Option two is to take out a piece of my shin bone, sculpt it to the shape of the removed bone, and then graft that in as my new jaw. This option is more desirable because the new jaw will have its own blood supply...and I won't set off alerts at the airport when I go through TSA security. So, unless things change, my shin bone WILL be connected to my jaw bone sometime in the future.
I'll spare you the rest of the details on this procedure until "inevitable" becomes "imminent." Now knowing that it will happen, we have our fingers crossed that it can wait until we come back from New Zealand in April. We will be living there for 10 weeks while I am a visiting professor at the University of Canterbury. In the meantime I am monitoring my symptoms closely and being careful not to have an accident that could fracture my deteriorated left jaw. If that were to happen, "inevitable" would become "immediate."
We'll keep you posted.
Mike
Saturday, July 6, 2013
I had a hard run...
I had a hard run
Runnin' the Peachtree
All day pouring
But not a drop on me
The Peachtree 10K Road Race is very close to the top of my Cancer Revenge List. I have lived in ATL for 18 runnings of the Peachtree and have only missed it three times--once in 2009, as I was recovering from my chemo + radiation treatments. So, as soon as the weather gets good enough to run outside, I re-dedicate myself to getting in the training I need to do this run (it is definitely not a race for me). This year was extra difficult as I struggled with lower back pain and got in only minimal training. My running partner Jeff (in the picture above) also had very little training. He is Winnie's son-in-law, and has spent a lot of time lately with Winnie and her family in the hospital. More on Winnie below.
We caught a big break with some cool, overcast weather on the 4th. The forecast was for heavy rain all day, but after pouring the entire night before, it didn't rain at all while we were at the starting line or during our run. It did start again about two hours after we finished and has been raining almost constantly since then.
We managed to run the entire 10K distance, except for the top of three very big hills. The only people who were more amazed than us by that was Jeff's wife, Deb, and my wife Terry. They were convinced that if we did manage to finish the race at all, it would be by walking most of it, and with the EMTs close behind us, ready to catch us when we collapsed.
After slogging through a muddy Piedmont park to collect our race t-shirts (which were pretty good this year, for a change), we found our way to the car and enjoyed the "Coldest beers ever" and wondered out loud how in the hell we pulled off running 95% of the course.
After the traditional post-race orange rolls we went over to Winnie and George's for a great barbeque meal. Winnie was looking good, and very happy to be back home. She did get tired fast, but was in great spirits. The reality is that her cancer is not curable, and no further treatments are planned. Because her cancer is so rare, they don't know how fast it might spread--but they are sure it has. From there Terry and I went to Jeff and Deb's mountain home and enjoyed the great scenery when we could get out between rain showers.
The purpose of my Cancer Revenge List is to get things back into my life that this disease took away from me for a while--and could have taken from me forever. So, like it has for 14 or so other years in the past, the 4th of July and the Peachtree Road Race came and went without incident, and my "new normal" as a cancer survivor keeps plugging along quietly.
And, on days like this 4th of July, when I am sweaty and tired, sipping that post-race beer with Jeff, I am reminded to thank all of you on Team Mike who helped make this new-normal possible.
Mike
Sunday, June 9, 2013
Team Mike on call for Winnie
I have not given an update on Winnie for a while because things were developing on her treatment plans and there was no news to report. Now there is. She has been accepted into a clinical trial for a new chemo pill. She takes the pill once a week for about 20 weeks. Even in pill form, the chemo drug is an ass kicker and Winnie is in the throes of its side effects right now--nausea, dehydration, loss of appetite, along with the severe pain from her cancer. Terry saw her a few days ago and came back very concerned.
So, this is a call for good vibes from Team Mike for Winnie. Please keep her in your daily thoughts and give her strength from the distance. Winnie is an amazing woman in many ways, but to be honest, struggling through tough times is not her strength--so she can use all of the help she can get from others.
As for me, the ORN episode last month has passed. I didn't detect the shard coming out--it probably got washed down with oysters and beer at the beach--but it's gone. The pain and swelling have gone down to their usual levels, which can be tolerated without meds. Yogi Berra said that "It ain't over until it's over" which is true about ORN. The problem is that it ain't over until it doesn't happen again, so there is no way to know if this will be the last episode. I see my oral surgeon in two weeks so hopefully he can give me a good assessment of things and keep me off the path to a jaw replacement procedure.
But for now, please give your thoguhts and good vibes on Winnie, her husband, and their family.
Mike
So, this is a call for good vibes from Team Mike for Winnie. Please keep her in your daily thoughts and give her strength from the distance. Winnie is an amazing woman in many ways, but to be honest, struggling through tough times is not her strength--so she can use all of the help she can get from others.
As for me, the ORN episode last month has passed. I didn't detect the shard coming out--it probably got washed down with oysters and beer at the beach--but it's gone. The pain and swelling have gone down to their usual levels, which can be tolerated without meds. Yogi Berra said that "It ain't over until it's over" which is true about ORN. The problem is that it ain't over until it doesn't happen again, so there is no way to know if this will be the last episode. I see my oral surgeon in two weeks so hopefully he can give me a good assessment of things and keep me off the path to a jaw replacement procedure.
But for now, please give your thoguhts and good vibes on Winnie, her husband, and their family.
Mike
Monday, May 13, 2013
The light at the end of the ORN tunnel...fading away?
After several months of no ORN 'events' it appears that I'm looking at another round of it. Signs of a new ORN event have surfaced in the last week or so. I'll spare you the details, but there is little doubt that this shit is not over yet. If this round goes like the others before it, I'm looking and 2-3 months of irritation, pain, and swelling before this new bone fragment works its way out of my mandible. It's too early to tell how large this new piece might be, but at this point, size doesn't matter--it's more significant that it's happening at all, because it means that the ORN is still there.
Short of having a surgeon go in and examine my jaw visually, the only way to know that ORN is over is if it doesn't ever come back. I had allowed myself to start to think that MAYBE I had seen the last of this, but that ain't happening, for sure. It's too soon to know if this will put me back on the path to jaw replacement surgery, but I liked it a whole lot better when that thought was not on my mind. I see my oral surgeon in mid-June, so will have that discussion with him then. Hopefully my appointment won't be during a Red Sox game, so he can give me his full attention.
So, time to gear up again and see how this unfolds. Terry and I are at the beach until the end of May, which means I can treat my pain with Margaritas and eat oysters, fish and shrimp on my new soft-food diet. I can handle that kind of medicine.
Mike
Thursday, May 2, 2013
Update on Winnie
Winnie was accepted into a clinical trial for a new oral chemo drug (maybe two). The trial starts none too soon, as her pain and other symptoms have progressed steadily. Her husband and family are naturally very concerned and the stress of it all is taking a big toll.
I don't know much about the clinical trial, but do know that Winnie is struggling and could use some Team Mike Good Vibes over the coming days and weeks.
Please keep her in your thoughts.
Mike
I don't know much about the clinical trial, but do know that Winnie is struggling and could use some Team Mike Good Vibes over the coming days and weeks.
Please keep her in your thoughts.
Mike
Wednesday, April 17, 2013
Team Mike 4, Prairie Dogs 0
I got the call today that my CT scan on Monday showed NED (No Evidence of Disease)! Of course that is wonderful news.
That puts me 4 years in remission. The magic number is five years for the doctors to declare this cancer as cured. That doesn't mean I couldn't get a new cancer after that, but this pack of Prairie Dogs would be history.
As it has the last three times, the NED result is cause for both celebration and reflection. Of course we are thrilled by this result, but at the same time the annual scan brings back the memories of what we have endured to get to this point. And, it's always "we." In one of my very first entries I said that fighting cancer is a team effort--and Team Mike has been wonderful over these four years. We could not have made it without your love, humor, support, and Good Vibes.
I'll be back here whenever I think there is more to add to this story. In the meantime, know that we appreciate all that Team Mike has done for us, and if we can ever repay each and every one of you, we will do that.
Mike
That puts me 4 years in remission. The magic number is five years for the doctors to declare this cancer as cured. That doesn't mean I couldn't get a new cancer after that, but this pack of Prairie Dogs would be history.
As it has the last three times, the NED result is cause for both celebration and reflection. Of course we are thrilled by this result, but at the same time the annual scan brings back the memories of what we have endured to get to this point. And, it's always "we." In one of my very first entries I said that fighting cancer is a team effort--and Team Mike has been wonderful over these four years. We could not have made it without your love, humor, support, and Good Vibes.
I'll be back here whenever I think there is more to add to this story. In the meantime, know that we appreciate all that Team Mike has done for us, and if we can ever repay each and every one of you, we will do that.
Mike
Monday, April 8, 2013
Scan coming up--need good vibes
I have my annual scan on April 15--four years post-treatments. While I don't sense anything that might indicate a positive scan, I won't allow myself to be over-confident and 100% sure that I'll get a NED (no evidence of disease) result. On my cancer support discussion board, we call this "scan-xiety"--a
little bit of fear that an upcoming scan might discover evidence that
someone's cancer has recurred.
And that's what cancer can do to you--it never lets you have a total peace of mind that "this shit is finally over." This disease is as unpredictable as it is dangerous. But all we can do is keep moving along with our new-normal lives, the proverbial one-day-at-a-time. Because if you let the doubt and fear grow too great, the disease has then found another way to beat you--and that can't be allowed.
When I first started this blog I was very intentional to call it "Mike Metzler Beats Cancer." I was strong and confident (those who know me would call it cocky) that I would beat this thing, and then simply go on with life as if I had recovered from a cold or the flu. Sometimes I think that my little show of bluster was nothing more than naive courage--had I any sense of how long and difficult this would be, my cockiness would have been tempered--a lot.
And, I think that's why survivors, me included, feel scan-xiety. We now know just how hard all of this was the first time through it, and there is a fear that we won't have the strength and good fortune to make it through again.
So, on the 15th, please make sure that your taxes have been sent off, and find a few moments to send some good vibes to me and Terry. I don't know when we'll get the results, but will let you know just as soon as we can.
Mike
And that's what cancer can do to you--it never lets you have a total peace of mind that "this shit is finally over." This disease is as unpredictable as it is dangerous. But all we can do is keep moving along with our new-normal lives, the proverbial one-day-at-a-time. Because if you let the doubt and fear grow too great, the disease has then found another way to beat you--and that can't be allowed.
When I first started this blog I was very intentional to call it "Mike Metzler Beats Cancer." I was strong and confident (those who know me would call it cocky) that I would beat this thing, and then simply go on with life as if I had recovered from a cold or the flu. Sometimes I think that my little show of bluster was nothing more than naive courage--had I any sense of how long and difficult this would be, my cockiness would have been tempered--a lot.
And, I think that's why survivors, me included, feel scan-xiety. We now know just how hard all of this was the first time through it, and there is a fear that we won't have the strength and good fortune to make it through again.
So, on the 15th, please make sure that your taxes have been sent off, and find a few moments to send some good vibes to me and Terry. I don't know when we'll get the results, but will let you know just as soon as we can.
Mike
Thursday, March 28, 2013
Update on Winnie, not good news
We don't know the full story yet, but we do know that Winnie's recent radiation treatments did not halt her cancer. Just the opposite, the scan revealed a large tumor in that same place on her face, and it's possibly growing into her brain. She has another appointment soon to get a follow-up opinion on the new growth and what the plan will be from here.
We'll keep you posted, but in the meantime please send your Good Vibes to Winnie and her family.
Mike
We'll keep you posted, but in the meantime please send your Good Vibes to Winnie and her family.
Mike
Thursday, March 7, 2013
No News Is Good News
It's hard to believe that it's been over 5 weeks since I've posted anything, but that just means no news is good news. I have not detected any new ORN spots since the Trophy Shard came out in December and another very tiny one came out in late January. I have detected some slow healing in the crater in my jaw, and that's another good sign. I am trying not to get overly confident, since the ORN could resurface
any time in the next 10 years or more, but so far, so good.
I do wake up every day with some considerable pain in my jaw--I think from the pressure of sleeping on my side at night. I have tried to fall asleep on my back, but just seem to naturally roll over to one side in my sleep. The good news is that the pain subsides a lot once I'm up and around in the morning. I'm never pain-free in that area, but don't need any meds to get me through the day, so I'm thankful for that.
The next step is to get my dentist's opinion on when he can start to do work on my teeth again. I've pretty well resolved that I'm looking at full dentures, but he needs to wait until the ORN has stabilized before that process can begin. It would not do any good to get dentures and then have my jaw start to deteriorate again.
We have no update on our friend Winnie. She has a scan soon to get the preliminary results of her second round of treatments, but it's likely that any scan this soon will produce a false positive. I have not seen her recently, but Terry has and tells me that Winnie is in mostly good spirits--but does worry a lot about the outcome of her last treatments.
More soon.
Mike
I do wake up every day with some considerable pain in my jaw--I think from the pressure of sleeping on my side at night. I have tried to fall asleep on my back, but just seem to naturally roll over to one side in my sleep. The good news is that the pain subsides a lot once I'm up and around in the morning. I'm never pain-free in that area, but don't need any meds to get me through the day, so I'm thankful for that.
The next step is to get my dentist's opinion on when he can start to do work on my teeth again. I've pretty well resolved that I'm looking at full dentures, but he needs to wait until the ORN has stabilized before that process can begin. It would not do any good to get dentures and then have my jaw start to deteriorate again.
We have no update on our friend Winnie. She has a scan soon to get the preliminary results of her second round of treatments, but it's likely that any scan this soon will produce a false positive. I have not seen her recently, but Terry has and tells me that Winnie is in mostly good spirits--but does worry a lot about the outcome of her last treatments.
More soon.
Mike
Friday, February 1, 2013
Serious Good Vibes Needed for Winnie
Our friend Winnie Brown has had a recurrence of her cancer and will undergo a second round of radiation treatments, starting this coming Monday. This is a very critical series of treatments. If it does not work, she is looking at a very grim prognosis.
Her cancer is extremely rare, with fewer than 400 cases since in was first identified in the early 1980s. You can learn more about it by following this link:
http://emedicine.medscape.com/article/1101894-overview
With so few cases, the doctors have little to go by for a treatment plan, so they can't say much about the chances of success. This round of radiation will likely take her right to the lifetime dosage limit--so it has to work for her. Chemotherapy is not a treatment option for her cancer.
Team Mike can increase those chances with your Good Vibes for Winnie, her husband George, and their family--all of whom are very close friends of ours.
As for me, I continue to feel better after the Trophy Shard came out. I have very little pain in that area, and I have an increased range of motion in my jaw, which makes eating much more comfortable. Slowly but surely, it's getting better now.
Mike
Her cancer is extremely rare, with fewer than 400 cases since in was first identified in the early 1980s. You can learn more about it by following this link:
http://emedicine.medscape.com/article/1101894-overview
With so few cases, the doctors have little to go by for a treatment plan, so they can't say much about the chances of success. This round of radiation will likely take her right to the lifetime dosage limit--so it has to work for her. Chemotherapy is not a treatment option for her cancer.
Team Mike can increase those chances with your Good Vibes for Winnie, her husband George, and their family--all of whom are very close friends of ours.
As for me, I continue to feel better after the Trophy Shard came out. I have very little pain in that area, and I have an increased range of motion in my jaw, which makes eating much more comfortable. Slowly but surely, it's getting better now.
Mike
Friday, January 18, 2013
Some light at the end of the ORN tunnel?
I had an appointment this week with the oral surgeon who did the two debridements and showed him the trophy shard that popped out of my jaw on Christmas day. He said it was one of the largest he'd ever seen, and that it was probably the main source of the pain and swelling I've experienced for well over a year. As always happens when one of the shards comes out, that area feels a lot better and the swelling has gone way down.
The best news from him was that he sees good evidence that the area is starting to heal, even if ever so slowly. Now that the trophy shard is out, the healing should accelerate--so I don't have to see him for 6 months. What should happen next is that the new gum tissue will get thicker and stronger and build back up. It won't ever build up to be even with the adjacent areas, but the size of the crater in my jawline will get smaller and smaller as the gum tissue grows back.
The doctor told me that I have about 50% of my jaw bone left in that spot, but he thinks that the remaining bone is very strong. There will always be the risk of a fracture to that area, but as long as I don't chew any ice cubes, open beer bottles with my teeth, walk into any doors, or get punched by Terry, I should be OK.
So, three years after it started, this could be the light at the end of the ORN tunnel. And, what a long, strange tunnel it's been. At one point I was sure that I was heading towards a jaw replacement, so this a huge relief.
Coming up next will be my annual scan, in April. If that is clean, I will be four years in remission, with one year left before I would be declared cured of this cancer.
Of course, all of this good news comes with the realization that I could still have more side effects and/or get a different kind of cancer down the road--but that is on my mind less and less as each day goes by. I'm thankful for where I am, for how much of my life I've gotten back, and for all the love and support and Good Vibes that Terry and I have received from family, friends and people we don't even know. Terry did a little investigative work and learned that this blog has been viewed more than 30,000 times since it started in February of 2009. Probably 10,000 of those views were by Randy Varley--but that still leaves a pretty large number left.
I will continue to post periodically, so don't stay away too long after this good news. We are monitoring Winnie's progress (her cancer was confirmed with biopsy--no word yet about her treatment plan), and learned just the other day that the brother of one of Terry's best friends has the same cancer I did and will start his treatments soon. Never a day off in Cancer World, even on days when some good news happens.
Mike
The best news from him was that he sees good evidence that the area is starting to heal, even if ever so slowly. Now that the trophy shard is out, the healing should accelerate--so I don't have to see him for 6 months. What should happen next is that the new gum tissue will get thicker and stronger and build back up. It won't ever build up to be even with the adjacent areas, but the size of the crater in my jawline will get smaller and smaller as the gum tissue grows back.
The doctor told me that I have about 50% of my jaw bone left in that spot, but he thinks that the remaining bone is very strong. There will always be the risk of a fracture to that area, but as long as I don't chew any ice cubes, open beer bottles with my teeth, walk into any doors, or get punched by Terry, I should be OK.
So, three years after it started, this could be the light at the end of the ORN tunnel. And, what a long, strange tunnel it's been. At one point I was sure that I was heading towards a jaw replacement, so this a huge relief.
Coming up next will be my annual scan, in April. If that is clean, I will be four years in remission, with one year left before I would be declared cured of this cancer.
Of course, all of this good news comes with the realization that I could still have more side effects and/or get a different kind of cancer down the road--but that is on my mind less and less as each day goes by. I'm thankful for where I am, for how much of my life I've gotten back, and for all the love and support and Good Vibes that Terry and I have received from family, friends and people we don't even know. Terry did a little investigative work and learned that this blog has been viewed more than 30,000 times since it started in February of 2009. Probably 10,000 of those views were by Randy Varley--but that still leaves a pretty large number left.
I will continue to post periodically, so don't stay away too long after this good news. We are monitoring Winnie's progress (her cancer was confirmed with biopsy--no word yet about her treatment plan), and learned just the other day that the brother of one of Terry's best friends has the same cancer I did and will start his treatments soon. Never a day off in Cancer World, even on days when some good news happens.
Mike
Friday, January 11, 2013
ORN Update and Need More Good Vibes for Winnie
It's been a while since my last post, which generally means that No news is good news. My pain level and swelling increased significantly right after the last post on December 22--to the point that I told Terry it might be time to head to the ER for some stronger pain meds. Then on Christmas day, a huge chunk of dead bone came out of my jaw, and things started to get better right away. Until then, the ORN bone shards were the size of a grain of rice. This sucker measured in at three-quarters of an inch long and about a quarter of an inch wide! Picture a paper clip that size and thickness, and you have an idea. It just popped out while I was using a toothpick to clean some food out of that area, and it scared the shit out of me when I first saw it--thinking that the rest of my jaw bone was coming out too.
But, every time one of the shards comes out, the irritation to that area stops, and the pain and swelling go down. Since then I've been able to gradually reduce my pain meds, to the point that I am now opioid-free for the first time in over a year.
I have an appointment with my oral surgeon next week, and can't wait to show him my "trophy shard" to see if he's ever seen one that large.
I still have a large crater in the lower left part of my jaw, but hopefully that area can really start to heal for good now.
We recently got word that our friend, Winnie's, biopsy did not go well. Even before the specimen was sent to the lab, her doc said she was 99.9% sure it was cancer--again. Her cancer is extremely rare--with fewer than 400 recorded cases EVER. It is so rare that they don't have any real knowledge of how to treat it. We'll know more in the coming weeks, but please send her some Good Vibes when she comes to mind for you. We are very afraid of what Winnie and her family are looking at with this thing.
Mike
But, every time one of the shards comes out, the irritation to that area stops, and the pain and swelling go down. Since then I've been able to gradually reduce my pain meds, to the point that I am now opioid-free for the first time in over a year.
I have an appointment with my oral surgeon next week, and can't wait to show him my "trophy shard" to see if he's ever seen one that large.
I still have a large crater in the lower left part of my jaw, but hopefully that area can really start to heal for good now.
We recently got word that our friend, Winnie's, biopsy did not go well. Even before the specimen was sent to the lab, her doc said she was 99.9% sure it was cancer--again. Her cancer is extremely rare--with fewer than 400 recorded cases EVER. It is so rare that they don't have any real knowledge of how to treat it. We'll know more in the coming weeks, but please send her some Good Vibes when she comes to mind for you. We are very afraid of what Winnie and her family are looking at with this thing.
Mike
Saturday, December 22, 2012
Good Vibes for Winnie...
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
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 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
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