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

Radiation Therapy--The Gift That Keeps on Giving

Can you say "osteoradionecrosis"? What it means is "Bone death from radiation" and is a side effect in about 11% of head/neck cancer patients who get treated with radiation. Well, count me among those 11%'ers. About a year ago I got an ulcer in my mouth that exposed parts of my jaw bone under the skin. That first one went away and the doctors hoped it was a one-time event. Then, about six months ago I started to get them on a regular basis, and it was decided that this condition needed to be treated now, before it got any worse. If not treated it will eventually cause my jaw bone to deteriorate to the point of needing reconstructive surgery.

While this would become a very serious problem if left untreated, at this stage it can be treated with good confidence that these ulcers will heal (but no guarantee that I won't get them in other parts of my jaw). The treatment is a long series of sessions where I'll be in a hyperbaric oxygen tank for 2+ hours at a time, Monday through Friday for about 8 weeks. Not the best of news for someone who is claustrophobic! Can you say "Valium"?

Somewhere around the middle of that time, they will be extracting a tooth that has been compromised beyond repair by the radiation, and also scrape out any dead bone they find. Can you say, "Hurts like a m_______r"?

A CT scan next week will give the doctor an estimate of how much bone death there is, but she won't know for sure until the tooth is extracted and she can poke around and see for herself.

While all of this sounds gruesome, at this time I'm not in much pain and the upcoming treatments and procedures will reduce the chances of the osteoradionecrosis getting to a much more advanced stage. Can you say, "precautionary measures"?

I will admit, and Terry will attest, that I didn't take this news well for the first few days. We both had a very bad deja vu event when we saw the hyperbaric treatment facility--it looked a lot like the dark and dingy radiation treatment facility of two years ago. And, the realization that I have to start every weekday for two months by getting up very early and going to a hospital to lay in a big glass tube for 2 hours, was a bit of a disappointment. We are also disappointed that we had to cancel this coming week's trip to my hometown to see family and friends. Can you say, "pissed off"?

But, my short pity party is over and it's now time just do what I have to do to keep fighting those nasty Prairie Dogs in a different way, starting Monday. Can you say "Game face on again"?

So, for the next 8 weeks, while those of you on the East coast are enjoying breakfast at home, send me some good vibes that the Valium is working and I'm not trying to bust out of the hyperbaric chamber with the hammer I'm going to conceal when I go in there. Can you say, "I hope he's not serious"?

Time will tell.

I'll post again once they have scheduled the mid-point procedure and ask for a Team Mike meeting for extra special Good Vibes.

Mike

"I had a hard run..."

Well, I managed to finish my second Peachtree Road Race after completing cancer treatments in 2009, but barely. It was the hottest starting temperature ever for the race, nearly 80 degrees (and very humid) by the time I crossed the starting line a little after 8 am.. Today's paper reported that 28 runners went to the hospital, and 269 others were treated for heat-related problems at the finish line. I felt a little light-headed after finishing, but that went away a few minutes later with the coldest, best-tasting beer I ever had.

The most significant part of yesterday was that it was a typical Peachtree Race, and an uneventful 4th of July, which tells me that I'm having the best revenge possible against cancer--just getting back to a normal life. Well, at least a new-normal life. I've learned to cope with the lingering effects of chemo and radiation, and understand that I will have some 'maintenance' things to deal with for the rest of my life, but those are easily managed with a little attention to them from time to time.

Even while I celebrate this return to normalcy, I know that I can never say that my battle with cancer is over with for good. But, while the Prairie Dogs are in retreat, I'll live my life as fully as I can, and look forward to another Peachtree 10K in 2012.

A special thanks goes out to Mary Jane Handlan who added a local touch to the Livestrong t-shirt that is the only shirt I'll ever wear for the Peachtree and the ATL half-marathon races again (click on the photo for a close-up). The city of my choice to battle prairie dogs from now on is DECATUR. GEORGIA. Please free to kick Prairie Dogs' ass in your own home town.

mike

The Prairie Dogs Get Romeo

Our beloved cat, Romeo (aka, Romes, Buddy Bud, Big Boy, Special One, and more) was put to rest this morning after a short battle with cancer--in his intestines and stomach. He was almost 13 years old, as best as we and the vets could determine. Terry rescued him from a no-kill shelter about 9 years ago, so his exact age was not known.

What ties us together in this was that he passed away from cancer, and how he gave me so much love and support in the worst times of my own treatment. When I was spending most of every day in bed, Romeo would jump up and keep me company for hours on end. He somehow knew I was hurting and was there to see me through those awful days. He was very much a part of Team Mike.

So, this could be the Prairie Dogs' revenge--picking on my Buddy Bud who could not defend himself from them the way I was able to. Cowardly f**ks.

Two years ago I gave Terry a funky, tall cement yard ornament cat for Christmas. So, after Romeo passed, we brought him home and buried him under the cement cat, with the cat facing the house--so Romeo can keep his eye on us for the rest of our lives. Check out the photo above and send some good vibes to Romeo in Cat Heaven. He was loved very much and will be missed even more.

mike

Update on Mara

Several of you have asked about Mara, so I thought I'd give you an update--but I wish it could be more positive. Mara has been doing daily physical therapy sessions at the Shepherd Center in Atlanta for the last two weeks. Shepherd is considered one of the very best facilities in the world for treating spinal and nervous system disorders and accidents.

Even with that level of care, Mara's progress has tapered off considerably. Just three weeks ago it looked very much like she would be able to attend her high school graduation and even walk to receive her diploma. That seems to now be an impossible dream and it is not likely that she will even be able to attend, as the logistics of transporting her to an event like that are very difficult and risky to her safety.

Please keep up your good vibes for her and her family. It has become a very long and difficult struggle for them in so many ways, and they need all the support they can get.

mike

Good News for Mike and Mara

Mike got some unexpected good news during an appointment with his lead oncologist last week. We were thinking that Dr. Henderson would be scheduling the next scan in about two months, but Dr. Henderson liked Mike's progress so much that he doesn't see a need for the next scan until this coming December! And, Dr. Henderson has set Mike's "remission clock" at two years, so we did a little (actually, too much) celebrating for that anniversary. There is no exact date when that clock started, but they generally consider sometime around the middle of treatment, if the ensuing scans are clean.

And, we have great news to report on our niece, Mara. After many weeks of slow or no progress (and several serious setbacks) she is now fully on the road to recovery. Her progress in the last 2-3 weeks has been nothing short of miraculous. She is off the ventilator during the day, and uses it only as a precaution at night. While she is still very weak, she has almost full range of movement with her arms and legs, and even walked a few steps this past weekend. She had been practicing her walk for about a week and surprised her father by walking with him watching--unknown to him that she had made that much progress. She is scheduled to leave the hospital in April 21st, over three months after her surgery.

She still has a long ways to go, and there is no way to know how much she will recover--but she is light years ahead of where she was just a couple of weeks ago, and the sky's the limit for her. She got great news that she has been accepted into three universities, with offers of partial track scholarships. After many weeks of thinking there would be no way for her to graduate high school this semester, or even attend the ceremony, it looks like both things will happen. It will be a very emotional scene when she walks up the stage to get her diploma.

Several of you have been asking about Mara, so we know that Team Mike has been hard at work with your Good Vibes for her. Much appreciated, by us and Mara's family.

Mike and Terry

April update on Mara, and Mike

Since the last post in late February, Mara's condition turned much for the worse for several weeks, until she started to make some positive progress. And that progress was very small, with many setbacks. Then, about 10 days ago she started to take larger steps in the right direction and recently has made huge gains. She's now off the ventilator while she is awake, has a good range of movement with her arms and legs, and speaks very clearly. She is scheduled to be released from the hospital around April 21st. She still has a long way to go, but her improvement is now steady and very noticeable every time we see her 3 or 4 days apart.

As for me, no news continues to be good news--so I've not needed to post to the blog much in the last several months. I have some of the life-long side effects from the radiation and chemo, but nothing that can't be handled or should cause worry. My next scan will be in about two months.

I was slack with my running over the winter, but will get back to it soon, now that I know I'll be running in the Peachtree 10K in July.

Over the summer I plan to work on a book that tells the story of my cancer treatments and recovery. I showed the blog to a consultant with the American Cancer Society and he thought that would make a great source for the book--he loved the Prairie Dog stuff! Of course, a big part of the book will be about all the love and support we got from Team Mike, and that will be the major theme for the book. More on this as it progresses and I can find the time this summer to do the writing.

mike

Update on Mara

Some of you have asked about Mara so I thought it's time for an update. Her story has taken an incredible turn since coming out of brain surgery over three weeks ago. In terms of the "big question" her tumor was successfully removed and it was benign, but there is much more to tell.

Mara dis not recover from the surgery at an acceptable rate, and caught pneumonia and some infections a few days after the surgery. Even a week later she was not coming around, and was so weak that she could not even breathe on her own. A few days after that she was diagnosed with Peripheral Neuropathy, which is a condition that cause nerve tissue to degenerate, so that it can't transmit the electrical impulses needed to make muscles move--so her chest muscles were not able to make her lungs go in and out for breathing. PN does not affect the central nervous system, so there is no risk to her brain, heart, and other vital organs.

The doctors are thinking that the PN was caused by rare interactions between the medications and steriods she was taking post-surgery. PN occurs in only 1 or 2 out of every 100,000 surgeries in this country!

The primary treatment for now are plasma filterings that clean out tainted platelets and put in healthy ones, to help the nerve tissue start to regenerate. So far Mara is showing signs of responding to the treatments, but it's much too early to tell how effective they really are.

Even though the doctors are confident that she can recover, it could take as long as 12 months or more.

She had a trach tube inserted last week that allows her to get off the ventilator and be a bit more mobile--which is needed to get her muscle strength back. But, she's still in the ICU and could be there for another week or so. Once she leaves ICU, she's looking at about 8 weeks of intense physical therapy in the same hospital. After that, she advances to out-patient therapy for the forseeable future.

So, while the prognosis is positive, she faces a long, hard road to whatever recovery she'll reach. Please keep Mara and her family in your thoughts--they still need lots of support to get through this tragic turn of events.

mike

Team Mara Still on Call

It has been a very dramatic week since Mara's surgery, and she is still far from being out of the woods. She is still in ICU, and still not able to breathe on her own. She has had a series of complications, ranging from pneumonia to air pockets that formed outside of her lungs--bringing great risks of embolisms. She is even more heavily sedated to keep her from moving and dislodging an air bubble into her system.

Some good news to report is that her tumor was benign, so that large question has been answered in her favor.

Please keep Mara and her family in your thoughts and prayers. They all have been very brave through this, but they really need to see Mara make a turn toward a full recovery so they can start to see a light at the end of this very dark tunnel.

mike

Mara is Hanging in There

My niece, Mara, underwent 10 hours of brain surgery on Wednesday. The good news is that they still think the tumor is not cancerous, but we don't have a confirmation on that yet. They were able to extricate the entire tumor, but had to do that in sections.

She has been in ICU since coming out of surgery, and is on a breathing tube because the pain meds are so strong that she can't respirate on her own. They hope to take the breathing tube out tomorrow.

She is awake for only short periods of time but seems to know who is around her when she does--and acknowledges that she is in a lot of pain. She will probably be in the hospital for another 2-3 weeks.

The doctors are encouraged by her early progress, but please keep sending her your good vibes until we know she is totally out of the woods.

This is one brave kid. Like I did, she needs to feel that people are helping to pull her through.

mike

Good Vibes Needed for Mara on January 26

On very short notice, we are asking Team Mike to send out your strongest good vibes tomorrow to our 18-year old niece, Mara Canning. After a migraine headache that started on Saturday, a MRI on Monday showed that she has a tumor on the back of her brain, where the brain stem meets her skull. The tumor is about the size of a ping pong ball.

The encouraging news at this time is that the doctors are fairly sure that the rumor is not cancerous, but they won't know without conducting surgery. The surgery will last anywhere from 8-10 hours, in an attempt to extract the tumor without doing damage to the vital nerves it is attached to.

The prognosis is upbeat going into the surgery--but that could all change if the tumor turns out to be cancerous, and/or it can't be totally extracted.

You should also know that Mara is an all-state runner in the 800-meter event. She was training hard for her upcoming senior season, and has been recruited by several colleges and universities. She had to pass up an official visit this past weekend, due to the onset of the migraine that started this series of events.

While secondary to her immediate medical needs, the surgery and necessary recovery time will cause Mara to miss her last track season, and not let her pursue her goal to be a State Champion--something that was well within her reach.

We visited Mara and her parents, Marie and John, this evening at Scottish Rite Children's Hospital, one of the very best places in the country for this kind of surgery. Mara's kid sister, Madison, was on her way to the hospital, and understandably worried for Mara. Despite their obvious worry, they are optimistic about the outcome and looking ahead to getting back on schedule for Mara to graduate from high school in May. Mara showed incredible strength and maturity during our visit--well beyond what you'd expect from an 18-year old kid whose biggest worry last week was whether her I-Phone's text function was working properly.

So, we need Team Mike to become Team Mara until she is safe and sound and her family is on the other side of this. We'll provide an update as soon as we have one.

mike and terry

"Fast Eddie" Krieger

Terry and I were in Florida on January 5th when I got a call from Mike Hart, a childhood and life-long friend who still lives in my hometown. Mike told me that another friend of ours, Eddie Kreiger, was very sick--the suspicion was cancer, but no one had heard if a terminal diagnosis had been made. Eddie passed away the very next day, in a hospital near Buffalo, NY. Due to the timing, and the ice storm that hit Atlanta the next weekend, I was not able to attend the service, which had a large turnout--attributable to Eddie's knack for making friends fast and keeping them forever.

I was able to reach another mutual friend, Steve Slavin, who had been in close contact with Eddie over the years. Steve told me that Eddie was diagnosed with bone cancer in November of 2010 and had experienced some good days and bad days along the way. Steve saw Eddie just a few days before his passing, and was told that Eddie was doing well enough to be discharged soon. That never happened, and Steve was shocked to learn that Eddie never got to go home again.

Eddie was one of those rare guys who could be described as a 'likable rascal' who got himself and many of his buddies into a fair amount of mostly innocent trouble during our grade school and high school years. For me, that extended into our college years, as Eddie and I both attended college in Boston. More on that later.

Eddie liked to drive fast cars, even before he had a driving license! I remember well the summer that we were hired by his father to paint the family house, and when both of his parents were gone and his dad's souped-up Chevy was left there, we would take it for joy rides around their neighborhood--and sometimes a bit farther. Eddie would smile and rationalize that we needed to do this because his father drove really slow, and the car needed to be driven fast from time to time to clear out the exhaust system. That worked for me. I was probably 14 and Eddie was 13.

I went to a Catholic high school in another town a short distance away. Eddie was a year behind me, and started high school in Salamanca. It didn't take long for him to wear out his welcome there, and his parents thought the he could be "rehab'd" by going to a private school--if he could get in with his bad grades and bad-boy reputation. I made a case for him with the principal at Walsh, and they let him in. Eddie did well at Walsh, getting decent grades and playing football, blocking on the offensive line as I played quarterback behind him. What the good nuns and priests didn't know was that Eddie (and his big gang of buddies) was still up to his juvenile tricks--but had just learned to be better at not getting caught (as much).

After I graduated high school I went off to Tufts in Boston, and two years later, Eddie started at a 2-year school near Fenway park. Eddie came to Tufts football games and parties at my fraternity house, so I saw him a lot. He was liked by the fraternity brothers so much that they wanted to make him a member of the fraternity, but the rules didn't allow that--so we made him an "unofficial honorary member." It was at a "mixer" (boy, does that give away my age) at my fraternity house that he met Barb--who soon became his girlfriend, and then his wife. She was with him when he passed away.

Sometime after college I fell out of touch with Eddie and Barb for many years. I'd ask people in Salamanca about them, but no one else knew much about them either. That is, until about 10 years ago when I asked someone again, and was told that Eddie and Barb were back living in Salamanca. I got in touch with them and visited them for a short time--and learned that Eddie had served 20+ years in the military and had retired to live in Salamanca. Barb worked at a pharmacy near their house. They had two adult kids who both were serving in the military themselves.

A party guy for many years, Eddie had stopped drinking and started to attend church regularly. He and Barb both rode Harleys, and I heard recently that they would go on rides with their church pastor. The last time I saw Eddie, he and Barb were both very happy living a quiet life in our small home town--very different from the "Fast Eddie" I had known since grade school, but all of the changes he made had brought him much peace and happiness, and it showed.

This past August Terry and I were back in Salamanca and stopped at Barb and Eddie's house to say hello. They had not seen me since I was sick, so I was excited to let them see the "new me" and to spend some time with them. But, it was a nice summer day, and most likely they were out riding their motorcycles, so we didn't get to see them. I left a note that we had missed them, and told them "See you next summer around this same time."

I now wish we had more time to come back later that day or the next day, but I just assumed that I'd see them again in a year--and would call ahead to make sure they were around.

Steve Slavin put it best in my conversation with him, saying "If you can't like a guy like Eddie, you need to take a long look at yourself in the mirror." I couldn't agree more.

Mike

Prarie Dogs Still at Bay!!

The results of yesterday's CT scan showed no signs of Prairie Dogs, so I'm now about a year and three-quarters in remission! The doctor says the exact timing is less important than the actual result, so we are celebrating the great news and ignoring any clock right now.

Actually, Terry celebrated the news "hahhed" and is now fast asleep as I write this. I won't be "fahh" behind. (It's a New England thing).

Thanks for the good vibes.

It's good to be alive.

mike

Good Vibes Needed Twice Coming Up

Team Mike has had a long rest now, which is a sign that my recovery continues to go well. But, we need you to spring back into action for two days in the coming week and a half, and send your good vibes to me and Terry.

On December 14th I have my regular 6-month scan (CT this time), and will get the results the next day--which I'll post. Terry and I had a scare a few weeks ago when I felt some pain that was very similar to what I experienced when all of this started in February of last year. So, for a few days we both thought, "Here we go again." It now appears that it was sinus pressure from a head cold that was starting, and the pain symptoms have gone away. Even so, we are anxious to have this scan so soon after that scare, and need your good vibes to help pull us through.

On December 20th I have my third esophogial dilation, to stretch the scar tissue in that area. I have been able to chew and swallow most anything I want to eat, but do feel increased tightness in that area, so am doing this as a precaution, and for the doctor to check for any constriction since the last dilation. That will tell us how often I can expect to have this procedure done in the future. The procedure is safe and fast, but does require full anesthesia. Think of it as an oral colonoscopy.

I'll end on that thought.

mike