From "the trach in 910"

Well, I have seen hell from its brink, and it ain't a place I want to see again.  Here's the scorecard: a 12-hour surgery, followed by 3 days in an induced coma, then 3 more days in ICU due to a bad infection, and then 4 days on a  post surgical floor and it looks a discharge in 2 or 3 more days. It has been hell in so many ways that I can't even count them.  The low lights have included, well, being in a hospital for nearly two weeks, oxycontin withdrawal in ICU, sometimes bad nursing care (but mostly excellent), having my head and face looking like a pink bowling ball with baseball stitches around it, and having to live the life of a hospital patient with no privacy or dignity available.

Because I had a trach tube installed as part of the surgery, I could not talk for several days, so when I pressed the call button I couldn't respond to "How can I help you?"  One nurse finally figured  that out and told the call nurse that if no one responds on the other end,  "That's the trach in room 910 so be sure to get me right away".  So, that's how I'm known to the nurses and floor staff now--the trach in 910.

But there are many highlights as we'll.  Tops among those are the great medical-surgical care I've received at Emory, the iron will of Terry to carry me through this, and some special help from two of  my sisters who have helped us in so many ways.  Thanks, Melissa and Mer.

I am writing on an iPad so it's a bit difficult to type efficiently and will post more soon.  I still have a long way to go before I'm anywhere near a full recovery, but the first corner has been turned.  I will leave the hospital with a feeding tube to my nose and maybe some other tubes still in me, but being able to go home and enjoy some deck time with Terry  (she'll have white wine, I'll have a shot of some brown liquid up my nose) has now become the first stage towards a near-normal life as a cancer and ORN survivor.

As always thanks to Team Mike for the good vibes to get me to to this point.  You pulled me through some pretty scary stuff in the OR and the ICU.

The trach in 910

Day 10

It's day 10 of the marathon and Mike has been improving steadily everyday.  Here are the highlights for the cancer blog junkies (I'll post more later).


His ability to write legibly on the white board improved with practice and as the sedation drugs left his body to the point I was starting to regret giving him the white board to begin with.


He can talk when the trach is plugged and he is walking with a walker and assistance so we are hoping that he is released from the hospital no later than Monday.


I'll give more details later today.


The good vibes and prayers worked!


Thanks,


Terry

Get ready for a marathon...

I've been pretty busy, so I'm just now getting to posting a blog.  Briefly, Mike's surgery lasted 12 hours Thursday.  Immediately following surgery he was admitted to the ICU where he remains 4 days later.  The surgery itself went well, with not surprises other than the fact the surgeons discovered that his jaw was already broken.  That would explain the intense and sudden pain at the start of the New Zealand trip.  For the past three days they've kept him sedated to give the graft a chance to heal.  He's having a couple of complications, including infection that's going to keep him in the ICU a little longer.

After Marie and I left the hospital last night (May 3) at 6:30, Mike went into A-fib and stayed that way until sometime around 5:30 this morning when he returned to normal sinus rhythm.  When I got to the hospital at 6:15 he was still sedated, had good coloring and was resting comfortably.  As soon as the ICU critical care docs, maxofacial docs and plastics (their term, not mine for plastic surgery) showed up  around 6:45 and started poking around in his mouth, he and his assigned nurse got very agitated, BP & HR went up (hers too), breathing became labored (she was huffing and puffing) and he looked very uncomfortable. She was livid.  He still has temp that is spiking up to 104 so they are changing or adding to current antibiotics.  All sorts of cultures have been taken the last couple of days when the fever started so those results should be in soon. There was a little bit of drainage anterior side of the flap so they took a culture from that area  this morning.  A little too soon for an infection to show up there, but they are still taking precautions.  Once everyone left the room, the nurse and the respiratory therapist were able to make some adjustments to the ventilator and some of the sedatives so he was calm when I left to meet Melissa at home. 

The plan for today is to slowly start to wake him up.  Visitors are allowed, but  are going to be asked not to interact with him so that he remains calm. I think it's more him wanting to talk and breathe on his own that upsets him.  (Can you picture mike being quiet?)

Whenever possible I try to remind them that he is a real person with goals and dreams so when Dr. Roser told me this morning that this was going to be a marathon, I told him and the "doogie howser" team in the room with him that Mike's running shoes for the Peachtree Road Race were delivered to the house yesterday.   Everyone starting grinning and chuckling because they remembered during the post-op visit with me that I had told them that he was planning on walking the Peachtree this year.  At least they know they've got a real fighter on their hands.

Team Mike - put on your running shoes and rev up the good vibes, wishes and prayers.

Please feel free to share with others.

Terry

Enjoy Every Sandwich

It's t-minus four days--at this time on Thursday I should be about 8 hours into a procedure that could last 12-15 hours.  After that I'll be in an induced coma for 2 or 3 days in the hopes that will get my healing off to a good start by keeping me motionless.  I am told that people have great dreams in these comas, so I've asked Terry to bring me some headphones and let me listen to some Grateful Dead in that "happy place."  If that can't generate some great dreams for me, even if a bit on the weird side--then nothing can.

Admitting to being in a very low state of mind since coming back from NZ and looking to May 1, I have come to grips with what will happen on May 1 and for a long time after.  Don't confuse that with being happy about any of this shit, but I know that attitude will be a  big factor for me and Terry as we go through this.  The reality is that I didn't have a choice about the events that have led up to this, but the other side of that reality is that I have a choice in how I handle it.  Just as I did five years ago with my cancer treatments, I'll get through this with pure grit, stubbornness, a good set of Eastern European genes, a sick sense of humor, great doctors, and support from Team Mike and its captain, Terry.

Oh yeah, and really good meds.

Speaking of a sick sense of humor, this is the gist of an exchange Terry and I had a few nights ago:

Mike:  What is your biggest fear going into all of this?

Terry: That you won't live through it.

Mike: That isn't going to happen.  Unlike the battle with the Prairie Dogs, this is not a life-threatening situation.  It's just going to be long and difficult.

Terry: And, what's your biggest fear?

Before I could answer, she says "...that you WILL live through it?" (!!!)

Well--sorta kinda, really.  I don't have any fears that I won't make it through the procedure or the long recovery period.  My fear is that my quality of life is going to be severely lowered to a point that even doing the most everyday things like eating will be become a huge struggle and wear me down over time.  And, while I don't consider myself to be a vain person, I do worry that I'll be so scarred that little kids in K-Mart will see me and run to their mothers, asking "Mommie, can I get a Halloween mask like that one?"

One of my favorite singer-songwriters was Warren Zevon, who passed away about 10 years ago.  Facing his impending death  from inoperable lung cancer, he was asked in an interview what he would say about his life in reflection.  He said "I'd enjoy every sandwich."  In that line of thought, Terry and I have been going to our favorite restaurants and cooking our favorite meals at home--on the chance that I might not ever be able to eat some of those things again.  So, here's our list and my favorites:

Grindhouse Burgers (Green Chili Cheeseburgers)
Rosa's Pizza (pepperoni and ricotta)
Shorty's Pizza (pepperoni, extra sauce)
Daddy D'z (Smoked brisket and baked beans)
Community BBQ (pulled  pork and ribs)
Rib Eyes on the grill (medium rare for me)
Cafe Lilly (goat cheese ravioli and chocolate fudge cake for dessert)
Terry's veggy soup
My chili
Tapatio Mexican (stuffed poblano peppers)
Terry's chocolate and blueberry pancakes
 Ice cream at any hour of the day (OK, I'm cheating here.  I know I'll be able to eat ice cream again)

We won't get to all of our favorites before May 1, but you get the idea.

This will be my last post until I come out of my coma and can clear my head of those Grateful Dead-induced dreams.  So, please send your best Team Mike vibes to me and Terry that this operation goes off with no added complications and that I can get on the long road to a full recovery right away.  If you want to check my status before I post again, feel free to call Terry.

In the meantime, enjoy a sandwich for me.

Mike

Back in the Vortex

I had a CT scan yesterday, followed by consultations with the two lead surgeons.  The purpose of the scan was to develop a 3-D model that will be used to shape the harvested fibula bone into the correct shape for grafting into my jaw.  If you want to know more about the procedure you can go to:

http://www2.mdanderson.org/depts/oncolog/articles/11/2-feb/2-11-1.html

While I was having a perfectly awful grilled cheese sandwich and cup of soup between the scan and the first consultation, I looked around and realized that Terry and I were about to re-enter the same vortex of hospital stays and doctors visits that sucked up all of 2009 and much of the next 2 years--this was just the start of it again.  That realization re-created many of the images and feelings I had back then, which I thought were gone forever.  Well, guess what?  The vortex is about to suck us up again, and we need to get ready for it.

The first consultation was with Dr. Roser, who is the lead maxofacillary (sp, who cares?) surgeon that I've been seeing for the last 3 years.  He and his residents answered a lot of questions we had about details of the procedure and the recovery phase.  He dropped a bombshell on us that there is a sign that the ORN is starting on the right side, but at this time there is no way to know if it will continue to develop.  But, if you remember my history in all of this, the prevailing pattern is based on SFL, so that seed was not a welcome bit of news.

The details of the procedure are gory, so I will spare you those.  The bottom line is that I'll be in ICU in an induced coma  for 2-3 days with a trach tube to help me breathe, followed by another 6-7 days in a regular hospital ward.  The key to it all is the first 48 hours, to see if the skin and bone grafts will take.  If they don't, then it's back to the OR for another try with tissue from my other leg.  One interesting bit of irony is that if the skin graft takes, I will have leg skin inside of my mouth that will start to grow hair there--actually a good sign.  Right now I can't grow hair on the outside of my left jaw, due to the radiation five years ago.  I'm trying to figure out how I'll get the shaving cream and razor inside of my mouth.

As of now there is no plan to insert a feeding tube, but that could change.  I lost about 13 pounds in NZ when I was having the last shard episode.  It's expected that I'll lose more weight in the weeks after the surgery while I am restricted to a totally liquid diet (being fed orally).  If I can't keep up with the needed calories and nutrients orally, the feeding tube will be inserted.

Once out of the hospital my left foot will be a plastic boot and I'll be using a walker or crutches until the leg heals a bit.  I'll be at home for most of the summer, with restricted mobility.  Luckily I am scheduled to teach an on-line course this summer, so can do that from home by checking assignments and grading tests. 

My first goal is to gain enough mobility and strength to walk the Peachtree 10K Road Race on the 4th of July.  That is near the top of my Cancer Revenge List, and I will do my best to check that off again this year.  My second goal is to be 100% back at GSU by the start of fall semester in mid-August.

The doctors painted a gory and sobering picture of what my face and mouth will look like right after the surgery.  The scan showed that the ORN is more developed than first thought, so more of my jaw will be taken out, and more teeth with it.  There will be more than one scar and they will be very long--one could go from behind one ear to behind the other ear, depending on how much damage there's been to some blood vessels from the radiation.  Think: Al Pacino in "Scarface."

I already have some permanent numbness on my left side, and that area could get bigger.  On the encouraging side, there is some possibility that they can remove some of the scar tissue caused by the radiation, to allow my mouth to open wider in the future--but that is at a 50/50 chance going in.

There are a lot more details, but this should give you the general idea and some kind of timeline for what Terry and I will be...er, facing in the next year or so in Cancer World.

It's the soon-daily return to Cancer World that is getting me down right now.  Sticking with the Al Pacino theme here, like his classic scene when he say's "Just when I thought I was out, they keep pulling me back in..." After beating the Prairie Dogs once and living our lives as cancer survivors for a while, Terry and I are now sucked back into Cancer World's vortex, and we are both going to be challenged again--and in some ways more than we were five years ago.  It's just not fucking fair.

But, we will face this new challenge the same way we did the first one, by doing what the doctors tell us, staying positive, laughing when we can (even if it hurts me to do that), and leaning heavily on Team Mike's support.  Already, all of my out-of-town siblings have made plans to come down to help us through the roughest part--this summer.  Please continue to send us your Good Vibes as the surgery approaches, and beyond.  We will need them to make our way out of the vortex again.

Mike

It's a Shard, Shard, Shard World

It's a bit less than four weeks until the jaw surgery, and it looks like it's going to be just in time.  After little more than a month since Trophy Shard II came out and my pain subsided enough for me to expand my range of safe foods a bit (love the fish and chips!), I discovered a well-developed Trophy Shard III this morning--still embedded.  I felt my pain level inching up the last few days so I had some suspicion that another shard was coming through--but I was really surprised to feel that it's already at the surface. Normally it's about 5-6 months between shards surfacing--this one showed up after about only 6 weeks. The size of this new one, and its rate of development means that the ORN is progressing faster now--so the timing of the May 1 surgery is fortunate.  To be honest, I am not sure my jaw can take another large shard coming out without causing it to fracture at the slightest bit of pressure on it.

Having to take two kinds of pain meds while the last shard ran its course was very difficult on me, and Terry.  Since stopping the gabopentin I have been much more alert and have not had to take daily naps. My reduced food intake from that has caused me to lose almost 15 pounds while in NZ.

So, our return home will come just in time, and we'll have three weeks to get our kiwis in a row before it's time for the next chapter in this book.

Start your Good Vibes that this thing does not pop out while we're in NZ and bank them for the May 1 procedure and beyond.

Mike

Home stretch in NZ

We have about 10 days left in New Zealand and have pretty much finished our touring of the South Island. Check the NZ blog for lots of great pictures and some stories about our travels here. We'll spend the home stretch in Christchurch, seeing more of the city, and checking our long shopping lists of souvenirs for those of you back home.

Since Trophy Shard II came out my pain has gradually come down to where I can eat a few different kinds of foods.  I have good and bad days, but more good ones lately.  The Kiwi Oxycodone has worked so well that I've not taken my other pain med in over two weeks.  That also means fewer daytime naps.

So, barring some freak accident the trip will end on a medical upbeat, and we win our gamble on getting here and staying for the entire 9 weeks.

But, this is Cancer World, so even when life's on easy street, there's danger at the door.  Every day brings us one day closer to May 1 and that is now creeping into our future plans ever so steadily.  We'll have a whirlwind of activity once we get home and the 22 days from touchdown in ATL to "Mr. Metzler, please start at 99 and count down as far as you can..." will fly by.

We heard that Maureen Vellia's surgery went well--clear margins and no surprises.  She is in recovery at Northside Hospital for 3-5 days then home for the next stage of her treatments--the infamous "Gifts that keep on giving"--chemo and radiation.  Please keep the Team Mike Good Vibes going for her--she still has a big struggle ahead in many ways.

Mike

A good friend gets bad news...

 

I subscribe to the Head/Neck Cancer board on the Cancers Survivors' Network (CSN).  I found CSN about two years after completing my treatments and it has been a great source of friendships, information, and support for the past 3+ years.  I read it about 4-5 times a week and post to it periodically.  From my posts about my emerging problem with ORN two years ago, I started to communicate with Pat, who had the same original cancer as me, and two recurrences since, but had managed to survive for over 14 years since his first diagnosis.  His name on CSN is "Longtimesurvivor." Key word two sentences ago: had.  He wrote to me yesterday that he's had a third recurrence--this time it can't be treated or cured. He has not been given a timeline yet, but his cancers have been fast-growers--this one came totally undetected by him in the last two months.

From the distance Pat has been a mentor to me as my ORN developed.  He did not have ORN, but did go through a procedure similar to my upcoming jaw replacement, so he could talk from much experience.  I think he has a medical background--he knows way  more about cancer and its treatment that could be taken from personal experience alone.  He has provided many people on CSN with authoritative answers to the many questions we all have about Cancer World.

Pat is a former world traveler, hunter, backpacker, and SCUBA diver--still hiking until just a short time ago.  He and I shared some stories about SCUBA diving, and he offered to send me a special mouth-hydrating device in the event I am cleared again to dive.

I had it in my mind that Pat and I would get to meet in person one day, so I never felt the need to know more of the details about his life, his cancer experiences, and his stories about New Zealand--he hunted NZ several years ago, and I am in NZ right now, so that gave us another bond in recent weeks.  As I pondered my options about coming to NZ now or waiting until the jaw procedure was over and healed, Pat was very clear--I can get my jaw replaced any time, but this opportunity in NZ was one-off, "So get your asses on the plane and worry about later, later."

My mind tells me to be really angry and sad that Pat has lost his long battle and I am losing one of the cornerstones in my own battle with the Prairie Dogs and their side-kicks, chemo and radiation therapy.  I really wish I could come up with a reason to rant and rave over Pat's impending death and my loss of a friend--but I can't, so that void is being filled for now with the numbing realization that anger will not solve anything, and that I need to stay focused on the rest of our time in NZ and my upcoming procedure--just as Pat would tell me to do.

mike

Update from Kiwi Land

Terry and I have settled into a nice routine in NZ.  We stay in Christchurch during the week--doing a combination of work for here and work for our jobs back home.  Terry does her work for HealthMPowers and takes yoga and BAT (Butt, Abs, and Thighs) classes 3-4 time a week, and I get ready for the gigs I'm asked to do as part of my fellowship, and cover bases at GSU from the distance.

On the weekends we usually rent a car and head out to tour the South Island.  Last weekend we went to Kaipoura, a small peninsula about 3 hours north.  The photo above shows one of the views from the front porch of our rented bungalow.  That view didn't last too long, as the clouds moved in to obscure the Southern Alps--but we did have a great time seeing some wonderful sights, including a pod of sperm whales from a high vantage point on land.

Tomorrow we head back north, this time another hour and a half further to Picton, in the wine country.  Next week, over the Southern Alps to the West to see the Tasman Sea coast and some of "wild" NZ.  After that it will be time to think about heading home, leaving NZ on April 7th.

Even in the middle of such a wonderful trip, Cancer World goes on and lingers in the background.  We have not heard directly from Maureen Vellia, but have been told her second opinion doc confirmed the need for surgery, which is scheduled for March 26.  That's when her world gets turned upside down--having to stop her practice--and her income--and having to concentrate on her recovery.  Please, please, send her all the Good Vibes you can before and after her surgery--she will need every bit of support she can get.

Lingering in our background, of course, is my jaw surgery on May 1.  My pain level has dropped a little since Trophy Shard II popped out, but Vicodin is still my best friend on a daily basis.  I'm able to eat a little wider range of food, but not much, and I'm still extra slow at chewing and swallowing.

But, since I've received no Care Package of Vicodin from Team Mike, I've had to use the local medical system to make sure I can continue to make it through the days here.  Funny thing--Vicodin is not even recognized here, and hydrocodone is not allowed, so my new best friend will soon be...

...Oxycodone!

Eat yer heart out, Harv.

Yes, one of the most abused and illegially-trafficed drugs in the US is readily available in NZ, which would explain why people here are so mellow, watch a lot of The Shopping Channel, and the national blood pressure is about 100/60.

To be honest, this is not good news because it means I have to introduce a new drug into my daily routine and be extra careful to monitor any side effects that differ from the Vicodin.  And, my past two de-tox's from Oxy were not walks in the park.  But, I'll deal with that when the time comes.  In the meantime I will be comfortable for the last 3+ weeks in NZ, and be able to re-stock my wardrobe with great deals from The Shopping Channel.

mike

Doug Sommer, Rest In Peace

Doug's final battle with cancer did not last long.  He passed away on Thursday, February 27 (US time).  Please send some Good Vibes to his wife, Phyllis and their families.

Mike

Maureen, Doug, and Mike

This will serve as a bit of an update on Maureen Vellia, Doug Sommer, and me--as you will see it's a mixed bag, and cancer still sucks.

We don't have an update on Maureen's health status, but did hear that the fund raising event went well and brought in more money than expected.  There will be more events soon, so hopefully some of the ATL folks can come out for one of them.

I mentioned a little while back that Doug Sommer (my sister's next door neighbor) had prostate cancer and was fighting for his life with it.  Marie tells me now that Doug has lost the fight, and is in terminal hospice care at his home.  He is expected to live for only another week, maybe two. I only met Doug and his wife Phyllis a few times, but could tell that he was was a great guy, a loving husband, and wonderful father to their two kids.  You can learn more about Doug here:

http://www.atlantasymphony.org/About/Artists/ASO-Musicians/Douglas-Sommer.aspx

He was a professional musician, playing bass in the Atlanta Symphony Orchestra, and teaching lessons to lots of kids over the years.  Please send your best Team Mike Good Vibes to Doug and Phyllis so that his remaining days can be pain-free and peaceful.

The rest of this posting comes with one of those warnings that

"The following content contains gross and yucky descriptions...squeamish readers might want to exit here or refresh their cocktail while others proceed."

About six months ago I detected another large fragment of dead bone making its way to the surface in my mouth.  I predicted that it would take about six months for the whole process to complete.  Almost exactly on schedule, it did that yesterday.  As you know, my pain level recently spiked and I found it difficult to eat, drink, and even swallow water.  After taking a dose of pain meds and the resulting nap, I did my weekly thing of poking around in my mouth with one finger, to feel any new developments in there.  I immediately felt the sharp exposed edges of a bone fragment, and could tell it was a biggun'--maybe another "Trophy Shard."  I was able to wiggle it, and sure enough, it started to come loose--like when a kids' tooth starts to come out.  After a few wiggles, I heard a little "pop", which was the fragment being fully dislodged from my jaw.  What came out was "Trophy Shard II", a disk-shaped piece, about 3/8 inches in diameter--jagged and very nasty looking.  It hurt just to look at it, knowing it had been wreaking havoc in my mouth for so long.

As when Trophy Shard I came out, the pain level in my jaw went down immediately, to about half of what it's been lately.  Still running about a steady 3, but a very welcome change after the 6-7 it's been for the last 6 weeks.  It still hurts to chew and I'm still limited to soft foods, but I can now swallow pain-free, which allows me to eat more at one sitting.

Now, that does not mean Team Mike is off the hook for those Vicodins I mentioned last time.  It's too soon to know my new rate of daily consumption, and if I have enough to get me home--so keep trying to find some to send to me in NZ.  Just so you know, I'm keeping track...

Mike

Brother, Can You Spare a Vicodin?

We did some touring this weekend to a central Canterbury town called Lake Tekapo, with ice-blue lakes, Mount Cook, and some of the best start gazing in the world.  We were not disappointed.  The weather was great, Mount Cook was humbling, and the skies gave us the Milky Way ,the Southern Cross, and a few pulsing strands of the Aurora Australis--Antarctic's version of the Northern Lights.  Terry stayed up late one night, and woke in the middle of the next night to see a few glimpses of the lights--very rare for this time of year.  Even without the lights, the sky was magnificent--the lights were just some cosmic gravy for us.

So, we are back in Christchurch for the coming week, and then off again next weekend--no decisions yet on that.

But we are facing the need to add to my Vicodin stash.  My added pain and swelling has put me over the daily estimate of what the doctors calculated I would need, so if it keeps on this schedule, I will run out with about two weeks left here. So, I am calling on Team Mike to find a local pill mill in your town, and convince a sympathetic doctor that you need some Vicodin to take care of your "pain."  Hurt yourself if you need to--I don't care.   Be sure to specify that you need Vicodin ES 7.5-300.  No generics.  And know that I'll count them on arrival to make sure you didn't take a few off the top for yourself.

Once you score, please send them to "Jerry Garcia" at 2-50 Kirkwood Drive, Riccarton, Christchurch, NZ.  Like Team Mike has done so many times in the past, I know that you'll come through again.

Mike

This is How Cool New Zealand is

Terry and I arrived in New Zealand just about two weeks ago now.  In that time we have been busy settling into our nice apartment right off the University of Canterbury campus, learning our way around Christchurch, doing a bit of local touring, and spending five days in Auckland at a conference.  We are now back in CC and will be here for the rest of our stay, except for some planned excursions on the South Island, and maybe one on the North Island.

The picture above was taken at the Hilltop Tavern, overlooking Akaroa Bay and the small village of Akaroa (be sure to hover over the image and enlarge it to max size)..  Built in the late 1800's as a mid-point hotel between CC and Akaroa, it has now become one of the most scenic watering holes on the planet.  I was there in 2000 and knew that it would blow Terry's socks off, so made sure we got a great seat for her first visit.  The beanbags came available and we spent about an hour in them, soaking in the sun and scenery, which included a cute billie goat that clearly knew how to sucker food from guests.  Too bad for the goat, but we only had drinks.

It seems like every day has brought something in the category of spectacular, whether it's been scenery like this (yes, there is more--lots more), meeting the great Kiwi people, seeing new birds, or just being happy that we missed the second Ice Storm of the Century in Atlanta a few days ago.  Thank you, Charlotte NC for letting ATL's time as the laughing stock of the South last only a few weeks.

So, other than rubbing it in ("We're here and yer not"), what's the point of this post?  Well, just as they have for the last 5+ years, the Prairie Dogs are showing their ugly heads when we try to enjoy some return to normalcy in our lives.  We knew we were taking a calculated risk to go this far from home for such a long time--sort of racing the ORN clock, hoping to get home before the jaw replacement surgery becomes necessary.  My pain and swelling have escalated again and eating any food that requires chewing is now out of the question.  Terry eats a big, fat lamb burger, I eat soup.  600 people around me at a local sports award banquet eat tender steaks last night, I get a double helping of mashed potatoes.  Terry eats a grilled cheese sammy, I drink a bad NZ "Boost"-imitation product, that makes me long for...well, real Boost.  You get the idea.

On the optimistic side, this is not the Prairie Dogs returning, so don't worry about that.  This is just the latest installment of the twin "Gifts that keep on giving"--the continued progression of side effects from chemo + radiation five years ago.

Last night at the banquet our host, Ian, asked me why I would come to NZ, knowing the pain levels and food restrictions I would be facing here.  I just shrugged my shoulders and said, "Because it's New Zealand--if this were any other opportunity, I would have stayed home and waited for the surgery to happen."  That got his attention, and appreciation, I think.

I have made a promise to myself and Terry that I would make every effort to fight cancer.  Five years ago, I was doing that every minute of every day.  Now, the fight is against the continued side effects from treatments, and the ORN surgical "clock."  Terry made a comment the other day that this is looking and feeling like my treatment period did five years ago.  She's right, and that helped me to put it into perspective.  It sucks, but that's what it is.

In the end, no one BEATS head/neck cancer--with its long list of side effects, the best you can do is SURVIVE it, and keep plugging along, looking for things in life to enjoy--like having a beer while sitting on a bean bag chair at the Hilltop Tavern in New Zealand.

Mike

NZ Blog and Musings on the Super Bowl

In case you are interested, here is the address for our NZ blog:

http://miketerrynz2014.blogspot.com/

We'll start posting shortly after we arrive in Christchurch and recover from the long flights.  We arrive a few hours before the Super Bowl starts, so hope to be awake for that--if it can even be watched there.

FYI, in NZ they call it, "The no-one-gives-a-shit.com Bowl" because a) it's not rugby, and b) they don't understand the commercials, even the funny ones.

My hope is that it a) snows a foot during the game, b) ends in a 0-0 tie after five quarters in sub-zero temps, and c) Bruno Mars has the male version of a wardrobe malfunction during the halftime show.

After watching ATL kneel to the weather Gods this week, I wish the same for the NFL for even thinking they can have a Super Bowl in NJ/NY in February and get away with it--after declaring Atlanta too cold for another game here in the future.

Mike

T-minus 9 days

 Kia Ora!  (Maori phrase for "Hey, y'all")

In 9 days from right now Terry and I will be on a flight, somewhere between Los Angeles and Auckland, NZ, on our way to Christchurch, NZ, where we'll live for 9 weeks.  It is hard to believe that it's nearly right around the corner.  While we still have to finish planning our packing, we have done well to cross things off the to-do list, and should be able to avoid any undue stress as we get ready to leave.  We'll have about a week in Christchurch to get settled in, before we go to a conference in Auckland for 5 days.  When we return to CC we'll be in full Kiwi mode that will take us up to April 8.  I'll post here for any health-related news, and you can check our NZ Blog for pictures and stories on other events.  I'll post the blog address before we leave.

The last 2-3 weeks have been tough--one last bitch-slap from the Prairie Dogs to remind us that while we can go halfway around the world on the trip of our lives, we can never escape this far-reaching disease and its after effects once and for all.  The pain and swelling in my left jaw has been a constant 6-8 on that 1-10 scale the doctors use to gauge it.  Even with meds, it doesn't go below a 4 at any time.  A small bone shard popped out about 10 days ago.  And, the trismus has ratcheted up (or down, as it goes) to the point that I am now on about an 80% liquid diet.  Eating anything with a fork or spoon is a struggle, usually ending up with a painful shriek, food stuck on my chin, and dropped food on my lap.  (I know, I know--many of you have seen two out of those three lots of times).

If it were any other opportunity in my life, I would postpone the trip to NZ and have the surgery done right now.  But, the reality is that my recovery is going to be almost a full year, and I'm afraid that I might never be able to go if I have the procedure before heading to NZ.  So, but for the grace of God, and with a bagful of Schedule 1 narcotics, there go I and Terry.  For now, it looks like our calculated gamble is working--the ORN is progressing, but slowly enough to get us home in time for the May 1 surgery.

We have not heard anything new about Maureen Vellia, but will see her before we leave and give you an update.

Mike

Cancer Strikes Close Again

Terry and I have been seeing a great chiropractor for several years--Maureen Vellia, who has become a good friend to both of us, especially Terry.  Maureen helped Terry with her two scarecrows this past fall for the contest at the ATL Botanical Gardens.  About two weeks ago Maureen revealed to Terry that she has advanced colon cancer and is currently undergoing treatment.  We are stunned by this news. 

Maureen is one of those people who lives a very clean and healthy life.  She is almost a total vegetarian, exercises regularly, doesn't smoke, rarely drinks alcohol, and does other things that she herself recommends to her patients.  It's just not fair that she should get this horrible disease.

Terry went by Maureen's office today to drop off some homemade soup.  Maureen was taking a nap on her treatment table, between patients, due to her fatigue from the chemo+radiation.  That Maureen is still seeing patients during all of this shows her dedication to the health of others.

We are asking Team Mike to send your very best Good Vibes to Maureen so that she can stay strong through her treatments, and more importantly that they work.

Terry and I can count almost 15 friends and family whose lives have been affected or taken by cancer since my own diagnosis five years ago. All of them hit close to home, but this one hurts a lot because Maureen is a healer, and it's not just her life that is being affected when she can't continue to put in her usual long-hour days.  She has been a godsend to both of us many times when we could not have functioned without her knowledge and skills.

On the local front, we got confirmation today that May 1 will be the date for the jaw resecting--and in the nick of time.  I am having one of those periods of increased pain, swelling, restricted jaw movement, and dead bone loss.  Three days ago, two small bone shards popped out, and it feels like more will follow.  If we were going someplace else other than New Zealand (say, Cleveland) for nine weeks, I would have the procedure tomorrow.  In the meantime I think I can make it to May 1 with vicodin, gabapentin, antibiotics, and atavin--all washed down twice daily with a nice New Zealand Pinot Noir.  You know--dirty work, but someone has to do it.

We will post here while in NZ, and on our Kiwi blog, so stop in from time to time, and please send your best Good Vibes to Maureen.

Mike

Guess What I Got for Christmas?

Yesterday, December 23, my oral surgeon's office gave us an early Christmas present--a tentative (but probable) date for my jaw resection.  May 1 will be the big day.  That will give us three weeks after returning from NZ to get things in order and for me to gorge on my favorite (soft, flat, easy-to-swallow) foods before I go back to my feeding tube diet for several weeks.  Terry is already practicing her pouring skills in anticipation.

Even though we have been gearing up mentally for this gig for several weeks, the news of a firm date hit us both like a ton of bricks.  I am making no bones (pun intended) about it--it scares the shit out of me and am glad that it is not happening right away.  I don't think I am strong enough physically or mentally right now to go through this surgery and the long recovery period.  But when the bell rings on May 1, I'll have done whatever it will take to be ready (Dear Sister Everista [my third grade teacher-nun], Is that a correct sentence?).  Living in NZ leading up to the surgery will allow me to get my head and body right to take this on the same way I did my cancer treatments--with raw stubbornness, a high tolerance for pain, Eastern European genes, a sense of humor, and the love and support of Terry and Team Mike.  Oh yeah--and lots of good meds ;)

Ironically, this is not the worst Christmas present we've had in recent years.  Hearing this news led Terry and I to rewind to December 24, 2008--the date we heard the news that my biopsy was positive for MEC cancer.  Yes, five years today we got the word and saw the radiation oncologist that same afternoon. Of course, that started everything in motion that has lead up to the May 1 surgery, once again verifying what I've said all along about chemo+radiation--they are "The gifts that keep on giving."

Regardless of this bit of news, we are looking forward to a nice Christmas, a Happy New Year, and a wonderful adventure in New Zealand.  In the meantime, Team Mike can take a break until you are called back into action on May 1, 2014.  I will keep posting here in the meantime, and also to my NZ blog once we arrive there.  I'll let you know when that starts.

Mike

Why me?

    About two weeks ago I had an appointment with my radiation oncologist who told Terry and I that he considers my cancer to be cured.  I have had "clean" scans for the last 4+ years and he sees no signs of the cancer I was diagnosed with in early 2009.  With my type of cancer, the  "cure window" is 5 years--if  the cancer does not recur in that time, the status changes from "patient" to "cured."  We celebrated that night but wanted to get confirmation from the lead oncologist before we would totally believe what we were hearing.  That confirmation came today--Dr. Henderson agrees that enough of the 5-year window has gone by with no signs of recurrence, and used the other C-word with me himself, c-u-r-e-d!
     But other news reminded me that cancer can be a cruel disease in so many other ways.  Terry got an email today from her friend Joy Hartsfield (currently being treated for cancer herself) that her brother Charlie passed away last night from head/neck cancer--similar to mine.  He was diagnosed only about a year ago, and never responded to essentially the same treatments I went through.  One year after my diagnosis I was on the road to being cured.  One year after Charlie's diagnosis, he was dead.
    A lot of cancer patients ask "Why me?" when they are first diagnosed and while they are struggling with the debilitating treatments of surgery, radiation and chemotherapy.  I never asked "Why me?" at that stage--I just chalked it up to SFL (the 'L' is for luck--the 'S' and 'F' will come to you in a moment).  I was HPV- and a non-smoker so there was no direct link between lifestyle and other known causes of my cancer.  I was glad about that, because unlike lung cancer patients who have been life-long smokers, I didn't have the added burden of guilt and second-guessing to wear on me during treatments.  SFL happens, so I accepted that and turned all of my energy to getting better.
    Since my diagnosis, several friends and people like Charlie who I knew through others were not able to survive their cancers--even after fighting the Prairie Dogs as hard as I did.  They followed their doctors' directions, had loving caretakers and lots of support from their own versions of Team Mike, but didn't make it through.  So, why did I survive and they didn't--why me, and not them?  Maybe it's just the opposite of SFL, maybe it's in my DNA--who the hell knows?  Certainly not me.
    I didn't know Charlie personally, but plan to attend his services this weekend.  Part of my reason for being there is to give Joy and her family some support.  Beyond that, I really don't know, but maybe by going there I can get a little closer to an answer for "Why me?"
    Even without an answer to that question, I do know that I have been given a second life as a cancer survivor, even if that life comes with a some serious side effects that will always be there to manage.  As a survivor I have a responsibility to help those who are on the same path I was five years ago.  I do that in a small way by offering advice and comfort to current patients and their caretakers on the Cancer Survivors Network and to people I know personally.  For a moment I thought that was the answer to "Why me?" but then wouldn't any cancer victim offer to do the same, had they survived?  I'd like to think they would, which then takes me back to wondering why I have survived and they didn't.
    My cosmic pondering aside, I am certain of one thing.  Without the love and support of Terry and Team Mike, I would not have been there today to hear my doctor say the new C-word to me!  For that I am ever-grateful.
                                     Please be safe and happy this Holiday Season.

Mike

Checking in

It's been over a month since my last update, so I thought I'd let Randy Varley and y'all read some news for a change--some about cancer, but mostly about good things in our lives lately.

The cancer beast has struck our street again.  This time it's our neighbor Darryl who has been diagnosed with colon cancer and had a section of his colon removed two weeks ago.  His prognosis is good, but he will have several months of low-dose chemo once he gets stronger from his surgery.

Joy Hartsfield continues to recover from her tongue cancer surgery and is back at work with limited hours.  So far there is not talk of chemo or radiation, so please send her some good vibes to let her not have to go through that shit.  She is a very small woman, and those treatments would be very difficult on her.

My left jaw is still swollen, so there is still a fragment there--but no sign that it's coming  out any time soon.  I have made some changes in my diet to eat only soft foods that require no hard chewing.  Lots of soups, cheesesteaks and ice cream.  Eating is a real chore, so I have cut down the volume of my food intake quite a bit, and have lost some weight.  The cheesesteaks and ice cream are there to help my calorie count--that's my story and I'm sticking to it...

Every year Terry enters the Atlanta Botanical Garden's Scarecrow contest.  She placed second this year in the professional competition with a huge scarecrow shaped like a two-handled corkscrew, and covered with over a thousand corks.  She had another entry, also covered entirely with corks, but that didn't place.  She got corks from friends, family, and a few restaurants--and more than a few right from home.

Demonstrating her versatile talents, last weekend she placed third in a chili cooking contest in Cabbagetown, a funky neighborhood in ATL.  While she was on stage getting her award and I was in front of the stage taking her picture with a guy in a pink bunny suit and a woman in a green cabbage outfit (that's the back of my head in the top picture), they announced the first place winner--me!  I was so excited for Terry that I almost didn't hear my name being called.  There were 99 cooks in the contest, and it was judged by professional chefs from ATL restaurants, so this is a huge accomplishment for both of us to be in the top three.

The point of all this is that cancer can invade one's life in many ways, as a patient, a caretaker, a friend, and as a neighbor--but you need to keep fighting the Prarie Dogs every day, whether they are in your body or that of someone around you.  If you fight hard enough and long enough, you can increase your chances of kicking their asses, and getting back to a near-normal life...well as normal as it can be with two "corkscrows" in your back yard and getting your pictures taken in a place called Cabbagetown next to a guy in a pink bunny suit and a women imitating a head of cabbage.

                                                                          Mike

A few updates

This has been a busy week for some of the folks we've been following and reporting to you on.  The memorial services for Winnie Brown was yesterday.  It was nice event--she would have approved, no doubt.  That was followed by a reception at George's house for family and close friends.  Another nice event, but it was obvious that Winnie was badly missed--as she will be for any future gatherings.

Terry got word that Joy Hartsfield's surgery went well and that she is feeling the expected amount of pain--a lot.  The surgeon had clear margins to work with, so hopefully this will be the extent of her treatment.  Please send her some good vibes for a fast recovery.

As for me, the oral surgeon's office is trying to coordinate the schedules of the several doctors who will be part of the team to do the jaw resecting.  They are looking at April 21 or 28 right now.  My pain level has inched up a bit, meaning that the current fragment is moving its way to the surface, but there is no way to predict how long that will take.  I am trying to find a balance between the amount of pain meds I take and the amount of pain I can tolerate to get me through the day.  In order to be pain-free I would have to take a lot of the meds, but that makes me very tired.

On the bright side, I had a follow-up procedure to my cataract replacements of about a year ago.  They did a simple laser procedure to clean up some of the old lens that was left in to help the artificial lens stay in place.  They did the right eye on Friday.  The left eye will be done early in November.  I have already noticed a big improvement, so am looking forward to getting the left eye done.

Mike

Replying to comments

Terry asked me recently if I saw and replied to the comments sent to me by some of the blog's readers.  To be honest, I thought that function of the blog site didn't work, and I stopped looking for them a long time ago.

Imagine my surprise when I did go there and saw so many supportive and complementary comments.  Please accept my apologies for missing them, and then not responding to them.  I will make sure to check for comments whenever I post a new blog entry.

Some of you have asked for my personal email address.  I am happy to provide that, if you can just give me a short reason for wanting it--so I can sort out those who really want to communicate from those would-be cyber stalkers, phishers, debt collectors, and ex-wives.

Mike

Rest in Peace, Winnie

On our way home from the airport after a conference in Colorado Springs, we got a call that Winnie Brown had passed away earlier this morning.  She was one day past her 78th birthday.  Winnie died from an extremely rare type of cancer that started in sweat glands on her face and spread via her nerve tissue.  She was told a few months ago that there was no cure for her cancer.  She managed to hold steady for a while but then started to go downhill fast a few weeks ago.  Terry saw her five days ago, just as Winnie was starting 24/7 hospice care at home.  Terry's estimate that it was a matter of hours or a few days proved to be very accurate.

We went over to see Winnie's husband George, their three daughters (Deb, Gay and Cherie) and Jeff (Deb's husband) and spent a little time with them as the reality of it all was sinking in--even knowing for a while that it would be sooner, not later. To varying degrees, they were coping as best as they could while slowly turning to the many decisions and plans that need to get done in the next few days and beyond.

Raising her daughters and then being a major part of their adult lives was Winnie's raison d'etre.  She and George doted on them, making them laugh and cringe in equal measures in the years I have known the Brown family.  Terry was a friend of the Brown family for many years before we entered that circle as a couple.  One of the highlights every year was being invited to the Brown's a few days before Christmas for a gathering of extended family and friends of Winnie and George's.  It was always a day filled with great food, fun stories, bad jokes, wine, Bloody Marys, Obama bashing by George, and reflections on the year just ending.  At the center of it all was Winnie, making everyone feel right at home, and cooking some of her signature dishes that we would remember with sighs and smiles until July, and have great anticipation from then to the coming year's Holidays.

Winnie didn't ask for much in life but what she did want most are the most important things-- the love of family and friends. She got, and gave, a lot that way.

Please keep George and his family in your thoughts.  George is having an especially difficult time coping with their loss and he will need  a lot of TLC in the coming days, weeks and months.

Mike

Needs lots of good vibes

A dear friend of Terry's, her art mentor Joy Hartsfield, has been diagnosed with a tumor on her tongue.  She will have surgery on September 25th.  Please keep her in your thoughts on that day.  Hopefully the surgeon will have clear margins and Joy won't lose too much of her tongue--and she can avoid chemo + radiation down the road.  Joy is a true "starving artist" and works a part-time job to survive on and keep her in art supplies.  She has limited health insurance, so it's important that she can avoid long-term treatment and care.

We have not seen Winnie in a while, but hear that she is doing well, even as her cancer spreads.  Please keep her in your thoughts, too.

We have started a series of tests, scans, and appointments that will lead to the jaw resecting in April.  All of the doctors are on board with our plan to wait until we get back from New Zealand, but the tests and other preparations are being done now just in case this turns into an emergency--and to allow it to be done soon after we get back.The prep time is long, due the the number of doctors involved (5 or 6) and the making of the 3-D model of my jaw to help with the bone sculpting that's needed.

Finally, I am having more eye surgery on the 28th.  After noticing some severe degrading of my vision the eye doc did an exam and told me that the little bit of the lens that's left in to hold the new lens in place has gone bad in both eyes, so he needs to remove the old lens bits.  Why does that not surprise me?  So, one will be done on the 28th and the other in October.

Mike

Decision time on jaw resecting

I had a PET scan last week which confirmed that the ORN is still progressing.  No need to tell me that after a new bone shard came out and I found another area of exposed bone in the back of my jaw.  So the discussion is no longer about if I'll need the jaw resecting, it's about when it will happen.  We spent a lot of time today with the oral surgeon who gave us a lot of information and answered a lot of questions.

We have decided to wait until after we return from New Zealand to do the procedure--unless of course some emergency happens in the meantime, and this needs to get done right away.  The decision was based on a lot of factors, most importantly the amount of time needed to recover after the surgery, and the number of days I will need to miss from work for that.  The conservative estimate is 4-6 weeks, but it could easily be longer.  If I have the procedure soon, I would miss the rest of this semester and likely run out of paid sick days by then.  If I can mange to wait until we get back from NZ, I would miss only about the last two weeks of spring semester, and then have several more weeks to recover over the summer, without using too many sick days.

So, we are taking a measured gamble that I can hold off until April, and manage to avoid any dramatic progression of the ORN or emergency situations between now and when we get back from NZ.  But if the shit hits the fan at any time before then, we go into full resecting mode with no questions and figure out the rest from there. 

As you may recall, I've described three levels of luck over the last 4+ years in my battle with the Prarie Dogs: good luck, bad luck, and S***** F***KING Luck (SFL).  My record shows a long and consistent pattern of SFL, but maybe this time I can turn that around and we can have a wonderful but uneventful (ORN wise) stay in NZ.  That's where Team Mike comes in--rather then needing your Good Vibes to get me through another acute episode, I need them to keep me from having an emergency before the jaw surgery happens in April.

I will admit that the thought of this procedure scares the hell out of me.  It is not life threatening like the battle with cancer in 2009, but nothing about this will be simple, easy, or pain-free--and I'll need to go back into that zone of coping with pain, meds, liquid diet, etc. until I can come out on the other side of this.  All in all, I'd rather be in Western New York State in the dead of winter, wearing nothing but shorts, a t-shirt, and flip flops, sitting in Rich Stadium watching the Bills lose to a local high school team.

Mike

...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