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