...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

I had a hard run...

For all of you who know the tune, sing along:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 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

What a Long, Strange Wait It's Been

You must be getting tired of me telling you that it's more Wait-and see, but that's what's going on with my jaw. They now suspect that the recent pain and swelling are being caused by a bacterial infection, so I was put on a three-week course of antibiotics.  Some of the pain and swelling have gone down, which is positive news--but the jaw area is still not healing.  The hope is that the lack of healing is due to the infection, so it's more wait-and-see while the antibiotics do their job and I can get another progress report after that.

 I did get the right eye cataract replaced three weeks ago, so am still legally blind in my left eye and see 20/20 in my right eye.  The left eye gets done on September 5, so please send good vibes that day.

Mike

Double Header for Team Mike--Need Good Vibes

Today is the first day of a big Double Header for Team Mike to send out some Good Vibes.  I have cataract replacement surgery in my right eye this morning and an appointment with my jaw surgeon on Monday, and can use some of your great support from the distance.

The eye doctor tells me that I have cataracts in both eyes, most likely a side effect from corticosteriods I took three years ago to reduce swelling caused by the radiation treatments.  The right eye gets done today; the left eye will get done in about a month.  I am told that this procedure has a 99.9% success rate, but considering my SFL since this all started, I'm not taking anything for granted.

For a long time I was confident that my jaw was slowly but surely healing from the debridement in April.  That's no longer the case.  There is an exposed bit of dead bone, and the pain and swelling have increased over the last month.  I was hoping that I would get good news at this coming Monday's appointment, but now I'm not so sure.  If the wait-and-see time is over on this, I am pretty sure the doctor will tell me I need a left jaw replacement in the near future.  But, I still have my fingers crossed that this will turn around, so need your good vibes to help me get some positive news on Monday.

Mike

I Had A Hard Run...But Made It

(Click on the photo to enlarge it)

Running the Peachtree 10K Road Race on the 4th of July is near the top of my Cancer Revenge List every year.  I was not able to train very much this year because of the hyperbaric oxygen treatments in late spring and several months of taking pain killers--the combination of which made me very tired.  Then, once I had those things behind me, Atlanta became Hot-Lanta in June with record high temperatures, and my training was limited to about 2 early morning runs a week.

The temps had been running consistently near and over 100 since mid-June and we set an all-time high of 106 five days before the Peachtree.  Then, the night before the race we had some heavy rain storms that lowered the temps for the morning of the race--even if it did hit 100 later on.

My goal was to run about half the distance and walk the other half.  My running partner, Jeff, and I actually ran nearly all of the distance, walking only on the two biggest hills.  Of course we had the "Coldest beer of the year" after the race, and then complained only about the t-shirt color this time--the selected front design was quite acceptable.

The rest of the day was a typical fourth of July--which is the whole point of this being on my Cancer Revenge List--to not let the Prairie Dogs intrude on our lives any more than they already have.  We came back to our house, had the traditional orange rolls with more  post-race beers, took a nap before going out to swim at Damon and Aleisa's, ate some great food, and then came home and took another nap.  Two naps in one day--it don't get any better than that!

Two days before the holiday I had a follow up with the doc who did the jaw debridement and got some mixed news.  Most of the jaw area is healing but much slower than expected, and he confirmed what I had suspected for a few weeks--I have a piece of exposed bone in that area.  He couldn't tell if it was old dead bone just now surfacing (good news), or new dead bone since the debridement (bad news).  So, I'm back into another period of wait-and-see what happens with the piece of dead bone and what that might mean for the future.

But for now I'll just enjoy meeting my goals for the Peachtree and having the best uneventful 4th of July a cancer survivor could have.

Mike

Setting the Record Straight

It seems that my last series of posts caused some alarm among a few of you who take the time to read these things  on a regular basis.  I really appreciate that some of you come back to check on me every once in a while, so I apologize for any worries I may have caused.  I'd promise not to use such heavy sarcasm in the future but that would be a waste of my words and your reading time.

But, now that I have made it through that stretch of hyperbarics, debridement, five months of opiate pain killers, and detox I will honestly say that I had no idea how much all of that had affected me.  I was in constant pain, had constant fatigue, was lightheaded a lot, was legally blind, and maybe even hit a stretch of depression from the sum of it all over the last 3+ years.

But now that the pain and meds are in the past, I'm back exercising some, have new eyeglasses, and the fatigue is gone--I'm feeling good again, and back to my normal self--age-adjusted, of course.  Just a few weeks ago I thought there would be no way I could even start the Peachtree 10K on July 4th, much less finish it.  While I know I can't run the whole distance, I'm sure I'll make it to the finish line to greet Terry, have the celebratory coldest-beer-ever and bitch about the color and design of the race t-shirt with my running partner Jeff.

All of that will remind me yet again that I'll be affected by cancer for the rest of my life--and getting rid of it in my body won't change that fact.  The ups and downs of this gig will go on forever and I need to remember to recognize when new challenges happen and to not let them get me down.  I have a lot of friends and family who are rooting for me, and a loving wife who will continue to captain Team Mike for many years to come.  After this series of setbacks 3+ years after treatments ended, I have no doubt that more will happen and I need to be ready for them when they do.

All I want now is for Terry to be sure enough that I'm OK to switch from plastic knives to our regular ones at home.   (Yes, Paully, I'm back)

Mike

Some Encouraging News, Some Less So, SFL, and 6 Wonderful Years

I had two appointments this week with doctors.  The first was with the oral surgeon who did the debridement in April.  He thinks that the healing in that area is off to a good start, and he is optimistic that I can avoid the would-be next step in this treatment progression--a jaw resecting.  I'm not out of the woods quite yet, but I can see the edge of the forest--sort of.

My other appointment was with a special opthamologist who examined me for the blurred vision I've had since starting hyperbaric treatments last August.  Blurred vision is a common temporary side effect, but mine did not clear up between the two sets of treatments, or since the end of the last set.  I joked around for ten months that I was legally blind, and guess what? I am!  If they had changed the big "E" at the top of the eye chart to any other letter, I would not have known what it was--so I got that one right.  Below that, I couldn't even guess at it.

They did some tests and it looks like I'm at the early stages of developing cataracts in both eyes.  The likely cause is corticosteriods given to me to reduce swelling in my neck during the radiation treatments three years ago.  Sure enough, my search on the web indicated that this is a known side effect--under the "rare but severe" category.  The plan is to get fitted for new glasses ASAP so I can drive again, and then monitor the cataracts' progress.  At some point, though, cataract surgery will happen--just a matter of how long into the future.

So, let's take stock here.  First I get diagnosed with base of tongue cancer--which unfortunately is not rare anymore.  But, my cancer cells are mucoepidermoidal, which are found in less than 5% of these cases.  Down the road I develop osteoradionecrosis, which occurs in only about 10% of head/neck cancer patients.  For the vast majority of those people, ORN comes and goes one time.  Mine is chronic, and so I head into nearly a year's worth of treatments that include the dreaded hyperbarics, two extracted teeth, and a debridement. That series of events appears to be coming to a good ending, but then I'm told yesterday that I have the "rare but severe" side effect of cataracts from meds I took three years back.

So, with those kinds of odds in my life why is it that when I play the lottery I can't get more than one number on any line of my ticket?  Well, there's three kinds of luck.  Good Luck, Bad Luck, and  SFL (it'll come to you), which I appear to have plenty of in the last three years--medically related.

But today is June 1 and the sixth anniversary of the luckiest day in my life--when I married Terry.  Without her I would not be alive to write this, or enjoy the many years I expect to have as a cancer survivor.

Mike

From Debridement to Detox--and the Joke Continues

It's now six weeks since the debridement and the pain in my jaw has practically gone away--enough that I could cut off my pain meds entirely and start to deal with coming out of  four+ months of an opiate-induced haze.  I had started to wean myself off the Roxicet before my last post, but was advised to slow down on the rate of withdrawal as the detox symptoms got a bit too heavy, too fast.  So I waited until Terry and I would be by ourselves at the beach for two full weeks, and gave her the order to "Hide the sharp knives--I'm going to detox the rest of the way, and there's no telling what might happen."  Truth be told and thinking the worst, I had some idea that Terry might be the one using the knives, not me.  That was a week ago, and I'm happy to report that the detox symptoms were not as severe as I expected--some headaches, a bit of nausea, diarrhea, some insomnia (that's why God made Atavin), some anxiety, and some "restless leg" syndrome.  All of those things lasted 3-4 days and I feel like I'm through it.  And, the Roxicet bottle is no longer screaming my name in the middle of the night.  Now, if only the Jack Daniels bottle would shut up...

But the joke is still not over.  Next thing to deal with?  Very blurred vision from some unknown combination of aging, and--you guessed it--those freakin' hyperbaric treatments.  I don't know the definition of legal blindness, but every time Terry jumps up and says "There's dolphins swimming right off the beach--can you see them?" my reply is "Shit, I can't even see the beach, much less the dolphins."  Actually Terry didn't even need to hide the knives--I couldn't have found them if they were right in front of my face.

So, now the list of doctors is going from: family dentist, to oral surgeon1, to oral surgeon2, to ENT, to oncologist, to radiation oncologist, to gastroentronologist, to otorlayryngologist, to oral surgeon3, to a retinal opthamologist specialist who will try to figure out how much of my blurred vision is from natural aging and how much is from side effects from hyperbarics.

But, as always, this "new normal" of a life I have is far better than that "other" option I was facing, and it won't bother me in the least later tonight when I have to ask Terry, "Is that the moon, or Venus we're looking at?"   She'll smile at me and say, "Neither, Honey, that's a shrimp boat."

Week 2 of Wait and See, and a vent

It's been two weeks since the debridement so I thought I'd post an update.  I had a follow up with the surgeon last Friday between him reading pages in a "100 Years of Fenway Park" souvenir magazine I gave him, telling me that he sees nothing out of the ordinary.  Seriously, I knew he went to Harvard Medical School and is a big Sox fan, so I brought this magazine to him to read AFTER my consultation.  He was so excited to get it that he was flipping through pages while he was talking with me and Terry.  He did put it down long enough to look in my mouth for a minute to check out his handiwork.

The upshoot is that it's way too early to know if the procedure will be successful, but at least there are no early signs to worry about.  I do have a rather large hole in my gumline that can accommodate chunks of food that a squirrel would envy--too bad winter is behind us.

The day after the debridement I started 10 more hyperbaric oxygen treatments--and am happy to report that I have the last one tomorrow.  After that, I will retire the ol' Secrist 4100-H for good, even if a doctor tells me I need more time in it.  I'm convinced that these very expensive and time-consuming treatments are nowhere nearly effective enough to do again.  Once tomorrow's 'dive' is over, I will have spent over 100 hours in the chamber, and another 25+ hours in the facility before and after dives.  Think about that--it's the equivalent of losing more than 3 WEEKS of work (plus the reported sick time away) while sitting in a glass tube sucking compressed oxygen and watching CNN and Sportscenter.  A slacker's dream, but no more for this boy.

While I'm  waiting for some sign that the debridement will work (always thinking positive), I'm now looking at my next challenge--withdrawing from 3+ months on a very powerful pain killing medicine.  The good news is that my jaw pain is going down--allowing me to take less of the med.  The bad news is that as I wean myself off the Roxicet, I'm starting to feel withdrawl effects like sweating,  nausea and anxiety.

As the saying goes, "Radiation therapy--the gift that keeps on giving."

Sorry for the vent, folks, but after a while, the f$%^ing joke is over and I'd really like my old life back, so whoever is responsible, I say "Job well done, you really got  me--and I'm sorry for whatever I did to piss you off" and please return me to my old bearded, pain free, Cabernet Sauvignon-drinking, food-gulping, grossly over weight self.  And when you do that, please also replace the thousands of dollars of over-sized clothes that I gave away when I lost 55 pounds--I'll need them again soon.

Mike

Debridement Done, More Wait and See

The debridement went as well as I could hope for, no complications and no surprises--except for the "Kill me now" pain I felt as I started to wake up in the recovery room. Luckily that was taken care of by two of my old friends from three years ago--Fentanyl and Dilaudid, so it wasn't long before things got more tolerable and I was ready for the second set (think about it, Paully).

Now the waiting starts again in the hopes that my jaw will heal and I can avoid the procedure that will make today look like a walk in the park. We need Team Mike to keep sending your Good Vibes for the next several weeks, so that I'll start to feel some healthy new tissue growing in that area, and the end of ORN will be in sight.

Off to a good start.

Mike

NED at 3 years...next hurdle in sight

My CT scan showed No Evidence of Disease (NED) which is the lingo for no trace of cancer cells in my body! Terry and I got the great news this morning. That puts me 3 years into remission! The docs will declare me cured of (this) cancer if I go two more years with NED--so more than halfway there!

We'll take some time to celebrate this news, but are already looking at the next hurdle in our path--the debridement for ORN on April 18th. We won't know the success of that for 2-3 months, but I'm told I'll get signs, either way, much sooner.

I won't be scheduled for my next cancer scan for another whole year, but will likely have scans before then to check on my ORN.

Thanks to Team Mike for the Good Vibes on the scan, and please keep them going for the 18th, and beyond. We couldn't have gotten this far without you, and still need your support to get positive results from the debridement procedure.

Mike

New date for debridement, more HBOs, upcoming scan

My debridement has been rescheduled for April 18th, followed the next day by 10 more hyperbaric oxygen (HBO) treatments. So, please bank some Good Vibes and I'll have them warm up the ol' Secrist 4100-H for ten more spins. After that, I'm told it will be 2-3 months until they know for sure if the debridement has worked, but I should have plenty of signs before then.

I have my next cancer scan on April 4th, so throw in some extra Good Vibes for that as well. I'll get those results on April 6th and will post them right away.

Mike

Debridement postponed

I got a call yesterday that today's debridement procedure would be postponed. Apparently the involved doctors were not able to consult to reach a specific operating plan. So, I have a pre-op appointment tomorrow, March 23.

Please use the extra time to bank some Good Vibes for when this does happen--I'll let you know when a new date has been set.

mike

Calling on Team Mike

After several weeks of uncertain scheduling, my debridement is on for this Thursday, March 22. The procedure itself is pretty simple and not very intrusive--the doctor will access the area directly, extract one tooth, scrape out any found dead bone, and apply some "liquid nails" to strengthen the remaining bone and promote healing. It's after that when I really need Team Mike to send your Good Vibes--to help that area heal properly, once and for all. The doctor says the success of this procedure should be known in 2-3 weeks. If it works, new gum tissue will grow in that area, my pain will diminish and go away, and it will fully heal gradually. If it doesn't work, the next step will be a resecting of my left mandible, which is a whole different procedure and lengthy recovery scenario that hurts by just describing it--so I won't. If the debridement is a "3" (out of 10), the resecting is a "9" on the pain + recovery time scale, with a long scar as my lasting souvenir.

I'll post after Thursday, but start banking those Good Vibes now and keep them going until the results are known. As always, thanks for your support for what's now been three years. I could not have made it this far without you.

mike

Debridement, not resecting, for now

We met with the oral surgeon on Friday, after a CT scan. After a lot of time, he made a decision to do a debridement (de-breed-ment) of my lower left jaw, not the full resecting. That means he will take out another tooth and then scrape away any dead bone tissue until he gets to healthy tissue, and then cover it with a substance to make the jaw stronger and hopefully promote full healing. This is by far the lesser of the two options in terms of pain and recovery time, so that's good news. However, this procedure does have a moderate failure rate, so there is still a chance that the ORN will continue--and if it does, the only option left is the jaw resecting.

I'll have another 10 hyperbaric treatments after the debridement, which is someone's idea of a very sick joke. At one time I was told I already had a 'lifetime dose' of that treatment, so another round was not an option. Somebody lied and it looks like I'll have to crank up the old Secrist 4100-H for 10 more spins.

There are a lot of factors involved with the scheduling of the debridement, so we don't have a date yet. I will keep everyone posted on the date when we know it. I'll be out of commission for 3-4 days after, and on a mushy/liquid food diet for two weeks or so.

Mike

Wait and see is over: "Can we play a different game?"

The "Wait and see" strategy has not worked--the socket from the extracted tooth is no better than it was nearly 3 months ago. While it's going to take some time until the next decision gets made, unless some miracle happens, the doctors have agreed that surgery is the only option to get rid of the dead bone in my left jaw. The only question is whether to scrape away the dead bone until they hit healthy bone, or just go directly to a resectioning of my mandible. The reality of the first option is that they might have to scrape away so much dead bone that the resectioning must be done anyway.

I will get a special kind of CT scan done in a week that should give them a good picture of how much dead bone is there, but even that might not be 100% accurate. The only way to know for sure is to go into that area and see it for themselves.

I continue to have a constant, low-level pain in that area that can spike from time to time. Both are manageable with my pain medication.

I'll spare you the details of the jaw surgery until I know the specifics. But, beyond the procedure itself is 5-6 days in the hospital and a lengthy recovery period after that.

In the meantime, please keep sending your Good Vibes to Briah Margolias--the latest word is that she has stabilized--but is still far from being out of the woods.

By the way--New England wins by 7 in the Super Bowl on Sunday.

Mike

Team Mike REALLY needed for Briah

Briah is one and a half years old and the daughter of one of my former graduate students. A few days ago it was discovered that Briah has a malignant brain tumor. The doctors were able to extract about 95% of the tumor, so some cancer cells still remain. She is not able to breathe on her own and is fighting for her life as I write this to ask Team Mike for its very best Good Vibes for Briah and her parents. The odds of her survival are heavily stacked against her, so she needs every possible kind of support. We have also been told that she must start her chemo treatments right away, which will put additional stress on her body.

Winnie Brown started her radiation treatments about 10 days ago, so she also needs some of your Good Vibes. From what we are being told, she is doing OK with the treatments so far. Her challenge will increase over the course of the treatments as the pain and discomfort get notched up.

As for me, some of my 'wait and see' ends today with an appointment with the best jaw ORN in ATL. I'll post an update later today or tomorrow. In the meantime, PLEASE send your best Good Vibes to Briah--she needs them much more than me.

Mike

Good News/Possible Bad News, More Wait and See

It's been an eventful last month dealing with the osteoradionecrosis (ORN) in my left jaw. It started a few months before that with increasing pain that eventually radiated from my jawline to my temple. The problem was being caused by slow healing of the bare socket made by the tooth extraction in October. Healing that should have been complete in 4-6 weeks had barely started more than 10 weeks later, and the pain got worse with each week.

Right after Christmas I felt a bony 'bump' in the socket and thought that another ulcer had opened up. While using a water pic a few days later, a sizable shard of dead bone came out of the socket, and the pain immediately started to subside. That was the good news.

I saw the oral surgeon earlier this week and caught her up on things, thinking she would be happy about those developments. Mixed reaction. She was happy that my pain level had gone down a lot, but the slow rate of healing is still very much a concern. New gum tissue can't grow over dead bone tissue, so she thinks there's still a good chance that I have more dead bone in my jaw. That's the possible bad news.

I have an appointment the first week in February with the best doctor in ATL for jaw ORN. He'll take new scans and then decide whether to: 1) wait more to see what happens, 2) go in and scrape out any dead bone he can find, or 3) do some type of resection (take out a chunk of the jaw and replace it with a metal plate or bone tissue from another part of my body).

So, on with more wait and see, with the odds of this healing on its own still at about 50/50. I can say that I am a lot more comfortable than I've been for 3-4 months, now that the bone shard worked its way out of the socket--so at least the wait is not a painful one anymore. I can now use my Roxicet for recreational purposes and watching Republican Presidential debates, not pain relief. Just kidding.

I do have an update on our friend, Winnie. She is getting fitted for a head and shoulder mask that keeps her completely still during the radiation sessions. My own experience with that was nothing short of a "white knuckle" claustrophobic reaction that required me to be medicated for the first two weeks or so of the treatments. As my tumor started to shrink, it got a bit better, but my heart raced every time they put that thing on and buckled it into the table. Well, Winnie is also claustrophobic, so she is going to need lots of Good Vibes to help her through this. Please do that for her.

I'll continue to report on my situation when the "wait and see" is over and the next course of treatment is determined.

Mike

Guest post about benefits of exercise for cancer patients

David Haas from the Mesothelioma Cancer Alliance
(http://about.me/haasblog) asked me to post this short article he wrote.

Thanks, David.

Cancer: Physical Fitness, Well-Being, and Recovery

One of the most important components in fighting cancer is a positive mental outlook combined with an optimal level of overall fitness. Physical fitness plays an essential part in reducing stress, fatigue, and depression during cancer treatment and recovery, and contributes to a positive mental state and enhanced feeling of well-being. Studies have shown that even 30 minutes of activity, such as taking a walk every day, provides a beneficial effect for cancer patients at any stage. An improved level of physical fitness boosts the mental and physical stamina needed to fight this disease, and can reduce the risk of a recurrence of some cancers by up to 40%. For example, Mesothelioma doctors have discovered that an increase in fitness levels improved lung function and increased the length and quality of life in patients after diagnosis and mesothelioma treatment.

According to studies conducted by the National Cancer Institute and other research facilities, physical activity and fitness can also have a direct and specific bearing on the development and recurrence of certain types of cancer. Decreasing the amount of fat in the body increases the level of certain hormones, including estrogen, which affect the growth and development of tumors. Regular exercise also causes the release of endorphins, which elevate mood, reduce stress, and aid in pain management.

Some other benefits of better fitness on treatment and recovery can include:

- An increase in energy and reduction of fatigue.
- A lessening of the occurrence and severity of some of the side-effects of treatment, such as loss of appetite, insomnia, constipation, weight gain, muscle weakness, and osteoporosis.
- A reduction of the occurrence and severity of secondary health issues caused by cancer treatment and certain medications. This includes high blood pressure, heart and kidney disease, and abnormal blood sugar levels.
- A shorter recovery time after treatment.
- A better prognosis and lower incidence of recurrence.

Physical fitness during and after cancer treatment equals better overall health, lower stress levels, and an improved sense of emotional well-being. It can help provide you with a better quality of life in recovery and beyond. While it is never too late to begin a regimen of physical activity, it is important to speak with your doctor to decide what level of activity is right for you, and how to incorporate it into your treatment and recovery plan.

Good Vibes Needed for Winnie and Frieda, and a Great Resource

Please send out your best Good Vibes for two friends who have recently been diagnosed with cancer.

Winnie Brown is the mother of Deb Rupp, one of our closest friends. Winnie has been diagnosed with an extremely rare type of cancer, adenocarcinoma, which originates in sweat glands--in her case along the scalp line between her right eye and ear. She had a procedure to scrape away several layers of skin in a large area and is now waiting for that to heal so she can start radiation treatments. Winnie is in good spirits, but understandably nervous about what lies ahead. Even with what she's going through, she is still going to be the star cook at her annual Christmas Eve brunch Saturday.

Frieda Hicks is the mother of Sue Metzler, our sister-in-law. Frieda has been diagnosed with Stage 1 breast cancer. She has had two procedures to take out cancer tissue, and is in a wait and see period as the docs decide possible next steps. Like many people, she has heard and read the horror stories that go with chemo and radiation, so is apprehensive about those treatment options.

About a month ago I found a great web site for cancer patients, caregivers, and survivors--appropriately called Cancer Survivors Network, at:

http://csn.cancer.org/welcome

It has discussion groups based on different kinds of cancers, so members can communicate with others who have been or are going through the same or similar situations. You don't have to register to read the posts, but you must register to post or reply to a post. While I had the best medical treatment and support I could have asked for, it would have been great to be in touch with others who were patients or survivors themselves of base of tongue cancer. If not for your own use, please pass this along to others who might benefit from it.

Mike

More "Wait and See"

I had an appointment with the oral surgeon today and the result is more "Wait and see" on my rate of healing from the ORN. Because the next two possible steps both involve complicated and painful surgery, she is going to give that area every chance to heal on its own. She did see some small signs of healing, but the rate is way behind what it should be, and I have developed another ulcer, this time on the right side of my mouth.

I am going to see one or two other doctors for their opinions before a decision is made to stay this course or move on to Plan B or Plan C. Looks like mid-January until another decision point is reached.

So, Team Mike's Good Vibes might have allowed me to turn a corner on this, but keep them coming--this is far from resolved.

mike

Healing Plan A Now a 50/50, Plans B and C Ain't Pretty

I've had three follow up appointments with the oral surgeon since the tooth extraction in early October. The bottom line is that the healing process on the outside of my gum line is way behind schedule. The tissue on the inside of my gum line is just about totally healed. The hyperbaric oxygen treatments plus the extraction were Plan "A"--the most conservative route in trying to fight the osteoradionecrosis (ORN) in my lower left jaw.

As of today, that Plan has about a 50/50 chance of succeeding. The doctor is giving it another three weeks before Plans B or C are considered.

Plan B would have this oral surgeon dig down a bit into my jaw until she finds healthy bone tissue, fill it in with something akin to Liquid Nails, and then hope the soft tissue can grow over that. No way to know yet how much she would have to dig out (and then how much Liquid nails she would use). The hopeful result would leave me enough healthy and fortified bone tissue in my jaw to let me function pretty much normally.

Plan C is even much more drastic. A different kind of oral surgeon would take out an entire section of my jaw and then either insert a metal plate or graft some bone from another part of my body--probably a tibia. The metal plate would provide more short-term protection to that area. The bone graft is less protective in the short term, but better in the long term, since it's my own tissue--and I would avoid setting off airport security warnings before every flight.

The point that I heard very clearly today is that the ORN will continue to be degenerative until all of the dead bone is gone and normal blood flow returns to that area--waiting it out is not a long-term option and the oral surgeon was seriously thinking of abandoning Plan A now and going on to B or C immediately.

Sorry for the graphic descriptions, but that's my introduction to a call out to Team Mike--I need your good vibes over the course of the next three weeks, to help me heal from the ORN naturally and avoid the other two options. The good news in the meantime is that I have only a low level of pain, so the 3-week wait isn't bad that way.

Terry and I wish all of you a Happy Thanksgiving--and as I have in the last few years, will show additional thanks for being a cancer survivor, on top of everything else that's good in my life.

mike

Hyperbaric Treatments Over -- Finally!

I completed my 40th and final hyperbaric oxygen treatment this past Monday--and none too soon. By the numbers, it took me 12 weeks to get in the 40 dives, with missed days for travel and a head cold. It took about 120 hours from my M-F schedule over those three months.

Even with the intrusion on my regular schedule, this series of treatments looked a whole lot easier than they were--all I had to do was get to the hospital around 7 am, hang out in the pressurized tube for two hours and breathe in pure oxygen while watching CNN and Sports Center. The first 20 or so sessions were fairly easy--I got into a routine and just didn't think about much, which made the time go by fast. But, the second 20, and especially the last 10 sessions felt like they were getting a minute or two longer every day, and the two side effects of fatigue and blurred vision really got to me. By around the 30th session, I was in a full-blown struggle, just as I had been two+ years ago with the combined chemo and radiation treatments.

While these treatments were nowhere as difficult physically as those two years ago, they did turn out to be as difficult psychologically. It took me a while to figure out why that was, but I think I have it. Two reasons. Two years ago I was fortunate enough to be able to take a leave from work, to devote 100% of my energy into getting through those treatments, with plenty of recovery time at the end. This time I had to manage the treatments along with a full-time work schedule and other daily-life events, and eventually those 120 hours, fatique, and blurry vision took a toll.

But even more than that, I had started to think I was free and clear from cancer and all of the baggage that came with it two years ago. Not true. While I am cancer-free, I am not free of the lingering and latent effects of the toxic treatments needed to get cancer out of my body. I had forgotten that I have two battles to fight for the rest of my life--one is to keep the Prairie Dogs from invading my body again; the other is against things like osteoradionecrosis that are sure to happen from time to time. And, when they do happen, I'll need to make--and better accept--the necessary adjustments to my life as a cancer survivor.

I will never let my guard down again, and I'll do better to cope with the next cancer-related challenge I face.

Mike

Oral Surgery Completed--Encouraging News

I had the oral surgery today to extract the damaged tooth and do the debrisment (fancy word for scraping) of dead bone tissue. The procedure went well and took only a short time. The hyperbaric treatments seemed to work in healing up all but one ulcer that had a small edge of protruding dead bone. The doctor scraped that away and saw no more dead tissue underneath it--that's the encouraging part. Her opinion is that while my osteoradionecrosis is chronic (because I've had multiple ulcers), it's towards the low end of the ORN severity scale.

She is cautiously optimistic that this could be the extent of it, but made sure I understood that she could make no guaranties. Wait, and be observant was her advice.

So, I'll chalk this up to another one of those things that have and will continue to pop up as side effects from my chemo and radiation treatments two+ years ago. What I've read is that they now consider the time for seeing these side effects at about 5 years, post-treatment. That puts me half the way there.

As always, I'm extremely grateful for being a cancer survivor for this long, and getting back so much of my pre-cancer life, and will stay prepared to deal with whatever comes next in our battle with the Prairie Dogs.

My apologies for not alerting Team Mike about the oral surgery, but we didn't know until yesterday that it was happening today.

I'll try to be more regular with my blog postings in the future, even if it's just to say that "no news is good news."

Mike

My Secrist 4100-H

Many of you have asked what the hyperbaric chamber looks like, so I thought I'd devote a short post to my Sechrist 4100-H...and what a beauty she is! Her cruising speed is 0 miles per hour, never needs gas-oline (but guzzles pure oxygen), and the on-board air-breathing apparatus is standard equipment. She can achieve 1.25 atmospheres of pressure for days on end. She comes standard with many safety features, such as a clear unbreakable full-length acrylic tube, heavy air-tight doors and state of the art A/C system. Her communications system features a secure, private phone line with a manual back-up system (sign language between me and the doctor or RN).

My Sechrist 4100-H has a personal audio and video tube-entertainment system which features a 24-inch flat screen monitor on an adjustable rail, for optimal distance control. Cable hookup is optional, but highly recommended. The video system is backed up by rear-mounted stereo speakers.

Other optional equipment includes a personalized water bottle (highly recommended), a urination tube, and bed pan (which explains why I never go to Waffle House before taking her "on the road".

The Sechrist 4100-H comes in six signature colors – Diamond White, Sahara Beige, Platinum, Crystal Green, Jade Green and Sechrist Blue (my color, shown above). I have been told that Michael Jackson's custom 4100-H was painted by the guys at American Chopper to look like a Harley-Davidson Road King.

The Sechrist 4100-H has no sticker price--if you have to ask, you can't afford it. The patient in the photo above is a trained professional (do not try this at home), and the depicted doctor is a required additional purchase--at $650 a treatment. Seriously--do the math for 40 treatments.

Obviously, spending too much time in the Sechrist 4100-H makes one prone to silliness, so be sure to have a designated air-breathing companion when you take yours for a daily two-hour cruise around the treatment facility.

mike

Stuck inside a hyperbaric chamber, with the ORN blues again

So far, I've completed 25 of my 30 pre-surgery hyperbaric oxygen treatments (aka, "dives"). I'll have three more before I leave of Japan this coming Friday, and the last two when I return. Then I have a consult with the oral surgeon, who will assess my progress and have a better idea of how extensive the surgery will be. Then, after the surgery I have 10 more dives, and will get my life back.

I have found a workable strategy for dealing with the daily routine of getting to the hospital and the monotony of the treatments. I just don't think about how intrusive it is on my daily plans, and above all, do not count down the number of dives I have left. It's coping by surrendering--I know that if I start to dwell on it, the time will feel really, really long every day. While the physical demands are nowhere near what I experienced with the chemo+radiation treatments, the psychological aspects of this are very similar. I just do what I need to do, and know that it will end at some point--and I can then get back to my normal weekday patterns.

More later when I know the date and extent of the oral surgery.

Mike

Don't Fear The Tube...

It turns out that my biggest challenge in the hyperbaric chamber is not claustrophobia--it's utter boredom. After my original disappointment with needing this treatment I had come to accept it, thinking that I could be totally out of cell phone touch, catch up on some reading, and get to work on a writing project I've put off for months. So, I gathered up my reading glasses and a stack of materials, and arrived at the facility ready to go.

As I got ready to enter the chamber (a long tube with plexiglass walls and a heavy door), I was told that I could not take any of that stuff in with me--not even my wedding band--due to the potential fire hazard in an environment with pressurized oxygen. The first thing out of my mouth was "Now, this officially sucks" but let the RN get on with things. So, I entered the tube with my waterbottle, my urination bottle (just in case), two pillows, and my blanky--sentenced to watch two full hours of repeated stories on CNN. Now, I watch CNN every morning at home, but for about 10 minutes, to get the headline stories that the morning paper might have missed. After that, it's on to Sportscenter, for the important news, like the Braves' score from the night before.

So, my immediate fate is set. Another 20 days of this routine before I go to Japan for a week, then the oral surgery, and then another 15 days or so back in the tube. We are hoping that the end result of this treatment and surgery will be a healthy jaw for many years to come. Knowing that my current condition would only get worse without treatment, and that I'll never give in to those Prairie Dogs--I have already learned a great coping strategy for the boredom of the tube--I just imagine I'm in a department faculty meeting, where I learned a long time ago how to zone out with my eyes open for way more than two hours at a time. Piece of cake, that tube.

I'm just praying that I'll never have to use that urination bottle while inside the tube. At my age, hitting the toilet is a challenge on most days, so, well...you can imagine where this is leading.

mike