So far so good

We were not supposed to see Dr. Roser until Tuesday, but he had an unanticipated opening in his schedule and asked us to come in.  He is pleased with how things look at this early stage.  No sign of infection--just the expected amount of swelling.  Other than the swelling restricting my mouth opening a bit, I am very comfortable--just one Oxyconin a day for...oh, yeah, pain.  Well, that's my story and I'm sticking to it.  No joke about that--I do not want to have to go through withdrawal for a fourth time.

Thanks for your Team Mike Good Vibes.  They are pulling us through once again.  But do keep them coming--the next few weeks will give Dr. Roser the signs of what will come next, and when.

Happy New Year and have a safe 2015.

Mike

Quick update

We got home around noon and I slept a bit.  Terry was till too wired for that.

As is often the case with this, a mix of good news and bad news.  The good news is that the jaw/fibula area is healing well on a visual inspection.  The surgeon had clear margins with the dead bone tissue, so that was easy to scrape out.  He extracted two teeth, not just the one that was planned.  The procedure needed a bit more effort than planned and that's the start of some potentially bad news.  Three screws were infected as was one end of the titanium plate.  The screws were easy to replace, but a plate replacement was beyond the scope of this procedure.  The plan is to up the antibiotics in hopes of the infection healing, but that appears to be a long shot.  In all likelihood there will be another procedure to replace the plate, but no way to know when that might need to happen.

So, I am home eating ice cream and we are binge watching "The Good Wife." 

Merry Christmas to all and I'll update more when something changes.

Mike

Deja Vu, All Over Again

So, class, before we move on, let's do a quick review of some things we've discussed in previous lectures.

First, can you say "Osteoradionecrois"? That would be Os-tee-o ray-di-o ne-cro-sis.  Who can tell me what that is?  No peaking at previous posts, Harv.

The correct answer is "Dead bone from radiation therapy treatments." If you got that right, give yourself one point.

Next (gimme) question: What is the acronym for Osteoradionecrosis?

Several students raise their hands and shout, "Ooo, Ooo, Ooo I know that one--call on me"

Answer is ORN--everyone gets a point for that.

OK--now put your thinking caps on--this is a toughie.  What causes ORN?

Several seconds of wait time passes--no answers.

Mike says--"It's when a bone area doesn't get enough blood supply, and the bone tissue dies.  Anyone who had Sister Mary Latin at Walsh should know the root words: necrosis (dead) osteo (bone) from (from) radio waves (radiation treatments--the gift that keeps on giving).  Everyone say 10 Hail Marys and do 3 Stations of the Cross for not knowing that."

Mike proceeds: What happens when ORN advances too far?

Pre-Med Paully takes a shot and answers--"The bone dies from a lack of blood supply and gradually separates from the healthy bone as a shard.  The biggest ones are called Trophy Shards."

Good answer, Paully--have a brownie

Let's moves on with the review. When you have a lot of ORN in your jaw and it won't get better, what do they do?

Several students answer:
(Phantom): "They take out your jaw bone and stick one of your leg bones in there.  I'm a chiropractor, I know the right anatomical terms for ALL of this. Just ask me"
(Mike): "Sure, I'll ask you to sit down and shut up"
(Alisa): "They put you in ICU and induce a coma for several days"
(Andy): "Yes, while your friends make bad jokes about you"
(Jeff): "You see 6-legged swimming lizards, and think you've been on a plane ride with me"
(Terry): "Then they move you to the 9th floor so that a nurse can scan your billing bracelet while you are urinating.  After about two weeks they let you go home so I can stay up all night giving you IV antibiotics and hand baths"
(Mike): "Yes, you are all correct.  Have an Oxycontin--two for Terry."

Susan Catherine Wheeler impatiently  raises her hand and asks, "I thought this was from three chapters ago in the book. Why are we going over this stuff again?"

(Mike): "Well, class, it appears that some of this shit is about to get a replay, so  you need to make sure you have a good understanding of the chapters from May of 2014 and the next few months to understand the next chapters in the book."

Back to the present--I had a CT scan this past Monday and we met with Dr. Roser the next day.  The news was not the worst it could have been (a major re-do of the May resection), but it also was not the quickie office procedure we had hoped for.  I have an infection in the left side of my jaw, next to the union of the remaining original jaw bone and the grafted fibula.  This is caused by new ORN since the May procedure, which has led to some funky stuff and blood draining out under my chin for the past few months.  After a long period of wait-and-see, Dr. Roser is sure it won't resolve on its own, so he will cut down one of the original incision lines, do a debridement to scrape out the dead bone, replace one or two surgical screws, and take out one more tooth. 

I spent a few hours today going through the pre-op routine at Emory and having some bad Deja Vu from  the same sequence of events for the May procedure.  Even though I know this time should be much less of an ordeal (about 2 hours in the OR, not 12--and home that evening, not 13 days later), I had this awful feeling of being sucked into the Vortex again (bonus points for whoever can find that in an earlier post), after thinking I would never be in that place again.  Well, guess what--I have a return ticket to the Vortex, dated December 23, 2014.

Dr. Roser says there is some small chance of finding more ORN than what he thinks is there, and having to replace the plates in my jaw, not just the screws.  If that happens, then we will yet again be victims of SFL (more bonus points for that--and don't look for it on Wikipedia) and all out-patient bets are off.  I told Terry that if I go under sedation on the 23rd and don't wake  up until Santa has come and gone, I'll be really pissed.

So, what does Team Mike need to send Good Vibes for this time?
(a), get my insurance company to approve the procedure on short notice so it can happen on the 23rd;
(b) make the procedure safe, with no surprises;
(c) give Dr. Roser a steady hand;
(d) make the recovery as short and uneventful as possible.

Answer: All of the above.

If all goes well, I'll post the next day to let you know.  If it doesn't go to plan, then I'll ask Terry to keep you posted for me.  If I don't wake up for Christmas, please don't open my gifts or take stuff out of my stocking.

Santa, the Roxicet and cookies are for you. Enjoy.

OK, class--that's it for today.

Mike

A Mixed Bag of News this Week

I had four doctors' appointments this week--all of them related in one way or another to my 2009 cancer, my treatments and the resulting side effects.  Most important and best news first--the PET scan showed No Evidence of Disease, either in the primary area or any place above my hips.  That means I am now six years with NED, and the lead oncologist says that he'll order no more PET scans in the future unless there is a certain need for them down the road.  I'll now get annual CT scans instead.

Those Deadheads out there will recognize this adjusted chorus from a certain song:

N-E-D, N-E-D
Ain't no letters I'd rather see
Doc checked the scan and said to me--
Mike, you're N-E-D!

The news from the oral surgeon wasn't quite that good, and will lead to more wait-and-see about any further surgery on my jaw.  Some of the news from him was good--he was able to wiggle out the growing bone shard in my jaw--and it was trophy-shard big.  That's good news because it means my body is fighting off additional necrosis, so if the soft tissue covers over the area where the dead bone came from, no more surgery will be needed in that specific location. If the necrosis continues or gets larger, then we could be looking at a partial re-do of the major jaw surgery. He is also a bit concerned about a small area just on the right side and under of my chin that is oozing some puss and blood on a pretty regular basis.  It is likely that one of the surgical screws is infected so he prescribed some antibiotics for me.  If those don't do the trick, I'll have some outpatient surgery in late December or early January to replace the screw--thus the wait-and-see decision.

So, please send Good Vibes that both of these issues don't escalate into more surgery--especially the possible larger procedure.

While we had a lot of good news this week, we also got some bad news that Deb Pangrazi's cancer has returned.  She had ovarian cancer in 2010 (see January 15, 2010 posting) and put up a great battle to survive it.  The docs now say she has chest or lung cancer and they are doing the early diagnostic work to get a better picture so they can start treating it soon.  Please, please send her and her husband Bob the best Team Mike Good Vibes you can muster--we are fearing the worst from this news.

Mike

Neat story, some updates, and Good Vibes needed

I am a member of the Cancer Survivors' Network, which is a great virtual community for current cancer patients, their caregivers, and those like me who have been fortunate enough to survive this terrible disease.  It is very helpful in many ways and every so often someone posts something that we all think makes for great reading to put our experiences with cancer into perspective.  This was a great example of that:

http://www.ted.com/talks/debra_jarvis_yes_i_survived_cancer_but_that_doesn_t_define_me/transcript?language=en 

The name of the link gives you the gist of her story, but you should read it for the full message.  While cancer has been the most defining thing in my life since 2009, I have made every effort not to let cancer define who I am as person.  If someone on that train has asked me, I would have told them "I am..."

Terry's husband and best friend
Dear friend to a handful of special people in my life
Sibling to three brothers and four sisters
A good teacher and mentor to my students

"A cancer survivor" would not even make the top 10.  To do that would give the Prairie Dogs too much credit and admit that they took part of my identity along with the physical damage they and their treatments have done to my body. I agree with Debra--even though I am reminded several times every day that I had cancer and survived it--I won't let it define who I am as a person.

I have not heard from Steve in a while so can't give an update on his status--so if you are reading this, Steve, let me know how you are doing.  I did hear last week that a professional friend in California, Shane, has had a recurrence of his Leukemia and will undergo another round or two of chemo in the coming weeks and months.  Please send him your best Good Vibes.  I will admit that my biggest fear would be to have to face a second attack by the Prairie Dogs and the barbaric treatments they call for.  The first round nearly killed me and I was much stronger and 6 years younger when I had to take that on.  It is said that every battle with cancer takes a physical, mental, and emotional toll that can't be recovered from 100%, so you start the second round with less reserve than the first.  Shane is now living my worst fear, and I hope he can summon the strength and support to fight this disease again.

All of that makes me amazed that my friend from Arkansas, Pat, is somehow still enduring his fourth bout with cancer.  He has been told that he won't survive, but he's hung in there for a lot longer than predicted.  Please send him your best Good Vibes for a peaceful and painless time until the inevitable does happen.  I've told him I'd like to visit him if at all possible, and am hoping he can find a window of opportunity before he becomes too weak for that.

The last, and least necessary Good Vibes are needed for me this week.  I have my annual scan tomorrow and feel no reason why it won't be another NED (No Evidence of Disease) result.  I see the oncologist on Friday to hear those results from him in person.  Also this week I have an appointment with my oral surgeon who will give me his latest assessment of the bone necrosis in my front left jaw.  I already know that he will tell me it's getting larger, but I don't know how much longer he'll keep watching it before more surgery is needed--or what the extent of that procedure will be. 

More on my status soon, but please send your thoughts and Good Vibes to Shane and Pat this week.

Mike

More updates

I have heard from Steve a few times and he seems to be doing OK.  He had his PICC line removed so the 4 times a day antibiotics infusions are over and he is getting back to a normal sleep schedule.  That is a big step in the right direction.  He's now in the slow-but-steady stage of healing and gradually getting back to eating solid foods.

You might remember my friend and mentor from Cancer Survivors' Network, Pat.  He guided me through the ORN developments leading up to the jaw surgery in May.  Pat is now in his fourth bout with cancer, and the docs say that it's not curable.  He can be treated to slow down the cancer's progress, but those treatments are taking a heavy toll on him.  Please send some Team Mike Good Vibes to him in Arkansas so that he can hang in their for more time with his wife before the inevitable comes around.  I am trying to find a time to visit him, but the opportunities to do that are fading fast.  If and when he is up to it, I'll get there.

As for me, we had two appointments yesterday that made us a bit unsettled, but nothing to worry about just yet.  I saw my ENT to ask him about my bouts with vertigo.  He said that given my history of disease and radical treatments in the head/neck area, the vertigo could be from any number of things--including the May surgery.   He has now put me on a watch, with follow up in December.

Later that day my oral surgeon told me what I already knew--I have a protrusion of exposed and dead bone in my mouth, right where the natural jaw bone is connected to my...well, you know--my leg bone.  He said that this is somewhat common, and his hope is that the bone will just continue to die and come out on its own--like my old stuff with ORN shards.  If it doesn't, he'll have to go in and remove the dead bone surgically, like one of the debridements I had two or three years ago.

A bit more alarming was his examination of a spot under my chin that opens up and oozes 'stuff' every so often.  That could be a sign of infection on the titanium plate.  If so, the best hope is that it will respond to antibiotics.  The worse case scenario is that the plate will have to come out and be replaced with a new one--basically most of what was done in May, minus the new leg bone being inserted.

So, both docs are now watching these developments closely.  I have my annual PET scan in December.  That will give them a good look at what's going on with both things, and also give me some time to monitor stuff myself.

Our job is to stay calm and be watchful for any signs before the December scan.  Your job is to crank up the Good Vibes machine that has worked so well in the past so that both of these things turn into false alarms. 

Mike

Update on Steve and me (I?)

I have heard from Steve twice lately and it appears he's doing OK.  Still in the early stages of recovery and trying to negotiate his way around the swelling, swallowing, etc.  He was in the hospital for about 10 days, which is about par for the course--so that's a good sign.

My own recovery has stalled a bit, but I am told that is not unusual.  I saw the orthopeadic doc today and he ordered a nerve test (EMG) to figure out what's going on with the nerves in my left neck/shoulder area.  From that they will know which nerve/s are not firing correctly and be able to estimate how much regeneration I can expect.

mike

Back on a plateau

After some optimistic improvement about 2 weeks ago, my leg and shoulder seem to have stayed the same and maybe gotten a bit worse.  Probably par for the course (2 steps forward, 1 step back), but it has been a bit disappointing.  I had hoped to be doing some light jogging by now, but that is still in the distant future.  I can still pick my nose with my left hand, so it's not been a total retreat.

The plan is to see the orthopedic doc on 9/8 to schedule a MRI for the shoulder.

No word yet from Steve Nau on his jaw surgery, so just keeping the Good Vibes going for him until he gets back in touch.  Please do the same.

Mike

Gear up for Steve

My ORN buddy from CA has his jaw replacement surgery on this coming Tuesday.  Please pile up a lot of Good Vibes for Steve Nau and his wife Sandy, and keep them going until I get a sign that they are doing OK.  We were very scared going into my procedure in May and it turned out to be twice the struggle we were prepared for.  But with lots of help from Terry and Team Mike and visits from my many siblings, we have made it through.  Steve needs the same kind of support.

After staying on a plateau of sorts with the healing in my leg and foot I have made great progress in just the last 2-3 days.  My gait is almost even on both sides and the feelings of weakness are gone for the most part.  Just woke up one morning and had none of the creaks and stiffness in that area and have not used the brace since.

The left shoulder remains a problem, but that too is getting better.  I discovered a large knot in the trapezius muscle and have been massaging that regularly.  The knot is still there, but it seems to be loosening up a bit and I have more range of motion too.  I still can't reach to scratch the back of my neck, but I can now pick my nose with my left hand, so will call that excellent progress.

You define 'progress' your way, I'll do it my way.

Please keep Steve and Sandy in your thoughts next week.

Mike

Progress Report, and Update on Maureen

I continue to make good progress and getting stronger every day.  My diet is pretty much back to where it was a year ago.  I use the liquid food only as a convenient choice 2-3 mornings a week, and for a quick snack between meals. My weight has stabilized where I'd like to have it, but watch it a lot to make sure it doesn't creep up or slip down too much.

Terry found a great compression/brace for my left ankle and I wear that now instead of the compression hose and plastic ankle brace.  It is much easier to get on and off, and gives me more lateral stability and better balance.  The drop foot is still evident, but mostly only when those muscles get fatigued.

Thanks to PT and trips to the chiropractor my left shoulder is getting better, too.  I have more range of motion and am gaining a bit of strength in that joint.  I still can't lift much weight with it, but it is getting a lot better.

My chiropractor has also fixed my back problems, that were definitely a result of being out of alignment in my left ankle.  I now walk with a more fluid gait, and can walk longer distances before I get tired.  I might be jogging again before too long, dare I say it!

My chiropractor is Maureen, who I mentioned a few months ago as being diagnosed with colorectal cancer.  I am glad to report that she is back at work on a reduced schedule and the docs say her cancer is shrinking from the chemo.  She still takes a dose of chemo on a regular basis, and has more infusions ahead, but it would appear that it's working--so far.  Keep your fingers crossed for her continued improvement.

Terry and I are starting to get back to the new-normal of being cancer survivors, by doing some projects around the house that went by the way in May and June, and by doing some limited travel.  We are going to Asheville NC later this month for a short getaway, and have a contracting crew ready to start a remodeling of our house front entry.  Terry is gearing up for her annual Scarecrow in the Garden sculpture, and I'm making plans to put in a wood working shop in the basement.  And, we recently entered our next chili cookoff.  It's not until November, but it felt nice to be able to plan ahead that far.

More soon.

Mike

Corrected date for Steve's surgery and some updates

Terry and I spoke with Steve on Friday and he corrected the date for his surgery.  It will be August 26, at Stanford University Hospital.  Steve had several questions for us as he looks to that date, but all in all, he and his wife seem to have a good handle on what to expect, and they both have positive attitudes and a good sense of humor.  So, put a hold on those Good Vibes for a few weeks and send them to Steve and Sandy as the 26th approaches.

I continue to mend slowly but surely from my own surgery.  My jaw feels great and I can eat more and more kinds of foods every week.  The drop foot is getting slightly better, but still hinders me from doing some things that I'd like to.  I would really like to walk more for exercise and start running a bit, but that's going to happen anytime soon.  Wearing the foot brace and walking with a lopsided gait has led to some issues with my back, which also limits my mobility.

Sometime after the surgery I noticed that my left arm was weak and had a very limited range of motion.  The doctors and the physical therapist are not sure if it's yet another side effect from the surgery, but it's for real and I'm doing extra PT for that issue.

So, let's take some inventory.  I go in for jaw replacement surgery and expect that I'll have a huge divot out of my left calf from that.  In addition to those expected outcomes, I now have a bad left foot, a bad back, and a bad left shoulder.  As Roseann Rosannadanna would say on SNL, "It's always something."

But, as it has for 5+ years, it sure beats the alternative.

Mike

Green Chili Cheeseburgers are Back! Need good vibes for Steve

I passed a significant milepost today in my recovery from the jaw surgery.  I was able to eat most of a green chili cheeseburger at the Grindhouse!.  I can't take in a full bite so had to nibble around the edges, go very slow, and wash down every bite.  But I did manage to eat about three quarters of it, along with a few onion rings--so life is good!

In other signs of progress, I am still making a shift from mostly liquid foods to mostly solid foods, but need to make sure I keep my daily calorie count up so I don't lose any more weight.  The way I figure it, green chili cheeseburgers and onion rings are medicinal at this point, so no reason to slow down on them.

Since several months before my jaw surgery I have been in contact with Steve from California, who was tracking his own ORN development a little behind mine.  I met Steve on the Cancer Survivor's Network and we have exchanged emails and phone calls along the way.  He is scheduled for his own mandibular resecting at the end of July--and his procedure will be very much like mine.  This is a call for Team Mike to send him our best Good Vibes.  I can only hope that he comes through with no complications, and gets on the road to recovery faster than I did.  We have promised to get together sometime in the future to have a beer, and to share...you guessed it, a green chili cheeseburger!

Mike

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