Recovery update

After a slow start on my recovery, due to complications during and after the surgery, I am glad to report that the pace has picked up a lot lately.  I am expanding my food choices a little at a time, and slowing weaning myself off liquid foods like Boost.  I lost a lot of weight right after the feeding tube came out, but with a better appetite and more choices lately I am gaining some of the weight back.  I can drink beer (limit is 2 a day so the government doesn't classify me as a heavy drinker), but wine is still a bit too strong for my taste buds.  Reuniting with Mr. Daniels is not in the foreseeable future.

The drop foot problem is slowly getting better, but still a long ways to go.  My physical therapist is pleased with my progress, but I still need the brace for stability and the compression hose to keep the swelling down. 

I am now able to get through most days without a nap, but don't fight it when one is needed.

My facial swelling is way down but still noticeable.  I don't know how much permanent swelling I'll have, but will ask the oral surgeon about that next week. 

We had a series of visitors who gave us a lot of help and were good company while we were mostly house-bound due to the IV schedule.  Thanks go out to Melissa, Marie, Phantom, Janet, Dan, Peg, Jim, and Mo.  We are now getting settled into a more-or-less regular routine, and enjoying our nightly Deck Time that has included some spectacular firefly displays in the last 3 weeks.

The only disappointment is that I won't be able to walk the Peachtree Road Race on July 4th.  But, we'll enjoy the holiday at the Rupp Ranch Resort in the GA mountains, and then I will get to work on running the race next year.

Happy 4th of July and check back from time to time.

mike

PICC line is out!

The homecare nurse came last evening and took out the PICC line for the IV meds.  While the line weighed very little, it felt like a ton had been lifted from my arm--and our daily schedule.  We are no longer tied to the 3 times a day routine and have already gone to bed earlier and slept a little later the last two nights.

As I said, progress is measured not by time, but by the removal of each line, drain, bandage, etc. that came home with me from the hospital.  The only thing that's left now is the brace and compression hose for my left leg.  I am going to PT twice a week and do some simple exercises at home daily.  The PT prognosis is good to recover most or all of the movement in my left foot, but it will take several months.

So, Team Mike can take another bow for all the help and love you've sent our way, and stand down a bit from this past 7 weeks of extra Good Vibes.  I'll continue to post regularly, so check in when you can--more funny and not-so-funny stories from my stay in the hospital coming soon.

mike

90% Free!

A short note to say that the oral surgeon gave the OK to stop the IVs and to take out the PICC line.

So, no more 4:30 am wake ups and 10:30 pm stay-ups.  The home nursing care folks will take out the line, hopefully in the next 24 hours.

mike

Looking for another "get out of jail" card--need Good Vibes

Nurse Terry has now administered over 100 rounds of antibiotics IVs to me since I got back home on May 13.  That routine has consumed about 5 hours a day and kept both of us to the tight schedule of three rounds per day: 4:30 am, Noon:30, and 8:30 PM.  We understand how important it has been to decrease my chances of getting another infection, but needless to say, we are way over this routine and would like our lives and sleep schedule back to normal.

Here's where you come in.  We have an appointment with the oral surgeon this Tuesday, at which he will give us the OK to stop the IVs, or tell us we have another week or two of them.  So we need your best Team Mike Good Vibes that Dr. Roser will smile when he looks into my mouth and gives us a "Get out of Jail" card for the IVs.  I feel no signs of infection, so we are cautiously optimistic that they will take out the PICC lines and we can stop the IV drudgery after that.

I have been making good progress on eating orally.  Boosts, yogurt, soups, eggs, cottage cheese, and ice cream are my staples, with an occasional "real food" thrown in--like chicken and some fruit.  The challenge has been to meet my target of around 2,000 calories a day.  My stomach is still shrunk, my appetite is still low, and eating is still a chore--so it takes a long time to chew and swallow food.  I lost about 7 pounds right away, but have since put 1-2 back on, so am going in the right direction.

The drop foot is still there, but some progress to report.  The PT says that are no signs of the nerve being severed, so it's a matter of the nerve healing itself, which will take 4-6 months.  I was prescribed a compression hose to keep the swelling down and it has worked very well.  I can now wear something other than my sandals, and that has stabilized my walking gait a bit and allowed me to walk longer distances.

Sadly, the Peachtree 10K on July 4th is not going to happen for me, but I have accepted that and we will spend the holiday at the Rupp River Resort in Ellijay and enjoy that a lot.

Big thanks to my oldest brother Jim, who had "Mikey duty" this past weekend.  Between sucking down my good beer and wine, eating our food, and going to a Braves game, Jim did complete some important chores that have been lingering a while because I am not able to do them.   

I'll update after the Tuesday appointment, so keep your fingers crossed for us.

Mike

Da plane, boss, da plane

After four days in an induced coma I woke up in the ICU, with Terry bedside.  I'm sure others were there, but don't remember who or when.  After my head cleared a bit and the doctors and nurses stopped poking at me and left me alone, I asked Terry for the small whiteboard and pen so I could communicate with her.  I had the full trach tube in, so could not talk.

One of my first questions was, "Was I on a plane?" Terry gave me a strange look.  In my fentynal and dilaudid-driven dreams, I had a clear memory of something having gone very wrong during the surgery and I had been taken to another city on a med-evac plane.  The only three people on the plane, other than the pilot I hope, were me (on an operating table), Dr. Roser, and Jeff Rupp--a close friend of mine.  Once we landed in god-knows-where, I was taken to a holding area in the airport, and was being tended to by Shelly Linens, one of my department's sports medicine faculty!

I was absolutely convinced that I was not in Atlanta anymore, and my next question was "What went wrong?"  The answer was that some things had gone wrong--the infection and a-fib, but I was assured I was still in Emory hospital and in good hands.

I was on fentynal patches during treatment in 2009 and had terrible nightmares from it--to the point that I was afraid to go to sleep.  This time it was scary in a different way, but I felt safe once I knew what was going on.

So, remember, fentynal is not for kids...

mike

More progress, one looming setback, time to eat!

We had a great visit with the oral surgeon yesterday.  He is pleased with the healing inside my mouth--enough so that the nasal feeding tube was removed and the trach scar no longer needs covering.  That means I can take showers now as long as I can keep the PICC line area dry.  Terry and I will come up with some way to do that.  After nearly 5 weeks of sponge baths, even many from Terry, it's time to get scrubbed down all the way.

The PICC lines for IVs will stay in for another two weeks.  We have some relief with that, though.  The visiting nurse put in extensions to the lines so I can reach them now to do that myself--giving Terry a break from that.  I have my big test this noon to see if Nurse Terry approves my technique and certifies me for solo infusions.

No doubt, the biggie was the removal of the nasal tube, so I can start to eat orally.  Same progression as post-treatments in 2009.  I have started with Boosts, oatmeal, yogurt, and diluted Gatorade.  The next step will be pureed soups.  For all you smoothie fans out there--I hate them and will try my best to avoid them--so no lobbying for those things.  Milkshakes make much better alternatives.

The trick is to make sure I can get enough calories and hydration to meet my daily needs, and to keep my mouth as clean as possible, to reduce the chances of infection.

Yesterday.

Mike (to Dr. Roser):  What happens if I get infected again in that area?

Roser:  We'll put in another nasal feeding tube.

Mike:  You'll have to catch me first.

Roser (looking at my braced left leg):  You won't be hard to catch--you'll be running in a circle.

The left leg remains the wild card in all of this.  If the peroneal nerve is to come back at all, it will take a long time.  That greatly reduces my chances of walking the Peachtree 10K on July 4th, to the point of needing a miracle, so you Deadheads out there know which song I need your Good Vibes to go with.

I asked Terry to take pictures along the way, especially when I came out of surgery and was in the induced coma.  I am going to show you a photo she took about 24 hours after surgery, and one from yesterday after the nasal tube came out.  I will warn you that the first picture is pretty gruesome--then again maybe the second one is too:

You can click on a picture to make it larger.  What they show best is how far I've come since May 2, with the help of dozens of doctors and nurses, friends, family, Team Mike, and most of all Nurse Terry.

The next milestone will be the removal of the PICC lines (tucked under the sleeve on my right arm in the lower photo).  That will mean the doctor thinks I am safe from further infection, and it will rid Terry and I from the three infusions every day.  In two weeks, hopefully.

Special thanks go to my brother Dan and his partner Peg for their visit last weekend.  They were great company for us and helped with food prep so we could host my sister Marie and her family for a smoked ribs and wings dinner on Saturday--my first cooking since late April.  Well, Peg worked and Dan helped by staying out of the way.  We  went to the ATL Botanical Garden on Saturday with them--a great outing, but tiring for me by the end of it.

Now that our spirits are a bit brighter and I have more energy, I'll post soon some of the stories (some funny, others not so much) and more pictures from the ICU, hospital room, and home care.

Keep up the Good Vibes--still a very long ways to go.

Mike

Charting progress with a different measure

I came home from the hospital looking like a human pincushion and quilt, with tubes and other inserts and bandages in seven places on my body.  I've come to realize that my progress should not be charted on a time line--it should be charted by when each tube/insert/bandage comes out or off.  So, here's the scorecard:

My trach hole has healed on the inside, and is about 90% healed on the outside.  So, I've gone from having a tube to having a small bandage there.  I can talk clearly, but not for long without getting voice fatigue.

The skin graft site bandage is off for good and that place is healing nicely.

The donor site on my left leg is healing nicely, but still needs a new bandage daily--no estimate on how long that will take to heal fully.

Both surgical drains have been taken out, so I have more mobility, and a little less work for Nurse Terry each day.

The nasal feeding tube is still in place and has caused some minor emergencies.  The oral surgeon said yesterday that he's "hopeful" it can come out this Monday.

The PICC line for IVs is still in, for at least another two weeks.

So, three things are out, two places are healing well, and two tubes left in for at least a week. Each time a tube/insert comes out or a site heals it takes a little less out of the long daily routine and gives me more mobility.

Oh, and I got the stitches out of my jaw area.  The plastics docs did a nice job, and the scar will hardly be noticeable.  And, we think they tightened up my age-sagging under-chin area a bit.

It appears that a nerve in my left foot got damaged during the operation and I have no dorsi-flexion there (raising the toes up).  I can walk around the house,  but it has limited my long-distance walking.  It's been an adventure to find a brace to help that area, but we think we have a solution.  If that works, I can get on track for my Peachtree 10K training.

Special thanks  to Dr. Jim and Janet for their visit this past weekend.  Jim was Doc-on-the-spot during a minor emergency with my feeding tube and helped Terry with a temp fix that kept me from going to the ER that evening.  Jim and Janet were great company and provided Terry with several take-out meals that reduced that load for her.  Jim gave me a "Boston Strong" cap that I took to my appt with the oral surgeon yesterday.  Dr. Roser is from Boston and got a big kick out of seeing the cap.

So, progress is now being measured with the removal of tubes and the healing of other sites.  By all's opinion, I am making great progress and have my fingers crossed that the feeding tube can come out on Monday--so please send good vibes for that.

Mike

Running the marathon, off to a good start, and an invitation

As Terry was told by the lead surgeon, this will be more like a marathon than a sprint, so we are preparing for a very long road to a full recovery--much of the extra time and effort due to the infection that surfaced during the surgery.

We met with Dr. Roser today and he is pleased with the healing progress in my mouth.  We see him again a week from tomorrow.  If all is still going well, the nasal feeding tube can come out and I can start eating orally.  Still a long ways from enjoying green chili cheeseburgers, but it would be a start.

The home care schedule is brutal on me and Terry.  Just the IV antibiotics take 9 hours a day--three, 3-hour sets, starting at 4:30 am and ending around 11 PM.  In between are meds, feedings, cleanings, etc.  It is consuming us right now but we hope to get some relief by having an extra IV line available tomorrow--that will cut the 9 hours down to about 5--a huge difference.

I am out of the walking boot and using adjustable sandals for my swollen left foot.  It is swollen from that calf being the donor site for the new jaw tissue.  Once that foot and ankle gets down to a size that can fit my running shoes, I'll start getting ready to walk the Peachtree 10K.  Right now my walking distance is limited to short walks around the cul-de-sac, with no inclines allowed.

Two GSU colleagues and my three doctoral students have offered to walk the Peachtree with me on July 4th.  Consider this an invitation to any locals to join us at the back of the long pack that day.  It will be strictly walking--no way I'll be able to run it by then.  So, let me know if you want to join us--I'll buy the "coldest beer ever" after the walk.

In the meantime, keep the Good Vibes going that progress keeps getting made, even if much slower than first estimated.

Mike

In Nurse Terry's hands at home

I've been home for little more than 24 hours, but Emory Hospital seems like a lifetime ago.  Once we were discharged we got a fast and confusing education in home care services, but have sorted that out and have started a routine to keep my antibiotics, nutrition, and hygiene levels where they need to be for a while.

Here's my current status.  I am taking massive doses of antibiotics to fend off any new infections, getting my food through a tube, dressing the leg wound that was the donor site for the new jaw bone, and watching the progress of my trach stoma healing. Once that heals I'll have more options for daily hygiene.  All of this is under the loving and expert care of Nurse Terry, who keeps  us on schedule while trying to work her own schedule around my significant needs in the next 1-2 weeks.

So, here's what I have pieced together so far.  The structural part of  the resection seems to have gone well--the surgical team is pleased with the early evaluation of their work.  The unanticipated infection has resulted in much of the extra work and concern at this time.  I should be eating liquid food orally by now, but they are trying to keep my mouth as clean as possible, thus the nasal feeding tube.  The first tube was inserted during the operation, but got moved somehow and it took two tries to get it right again--probably due my kicking and pain during the insertions.  Easily the worst part of this that I was awake for.

I have about a 6-inch divot of flesh and bone taken from my left calf to serve as the donor tissue for the new jaw.  That sucker hurts, and it's stiff.  I have a big walking boot that I use to gain some stability when walking.

The crown jewel right now is a big pink and shadow-bearded face with about 200 stitches in it, and is unevenly swollen--think Herman Munster after after a bad fall. I can feel and see the swelling go down ever so slightly each day, but still a very long ways to go until they can start the next step of dental work.

A lot of things can still bring SFL back into play, so keep up the Good Vibes.

I have some pictures and stories from the hospital that I will post soon--right now I need to get a tummy full of some brown liquid I am calling food for now.

Mike

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