Into the Wild

Look who has been released into the wild:

Michael was discharged from the hospital around 11:00 this morning and joined his mother and I back at Family House Shadyside.  He's alert and thrilled to be out of bed.  He's a little self-conscious about the bandage, but his nose continues to drip blood.  We learned it is indeed somewhat packed way on up there.  The "wire" taped to his cheek must be the way they will eventually remove the packing, not some remnants of the failed surgery which will give them a head start next time.

Speaking of "next time", we still don't know when that will be.  His next appointment with Dr. Gardner is Tuesday afternoon at 3:30.  I've communicated with Juliana, the woman who schedules his surgeries, to express our hopes that everyone can reconvene by the end of the week to finish what they started.  That was Dr. Gardner's "best case" scenario, but we have no idea if logistics will allow it.  (If not, I suppose we'll have to entertain returning home until it's rescheduled.)

For those who missed it, Michael was cleared by the cardiologists last night.  There is nothing wrong with his heart.  Enzymes were good, EKGs were normal and stress test worked out fine.  If anything, we've learned as a bonus that he's extremely healthy as far as that goes.  The irregularities during surgery must have been a spasm, perhaps caused by the anesthesia.  Michael says this incident has sworn him off smoking forever.  (If he's ever tempted, I've got some great pictures to remind him of his extra ordeal!)

So, we have three days in Pittsburgh to relax and recoup.  While not as bad as the hospital, it would still be easy to go stir crazy at Family House, so I hope he'll feel like getting out and doing something.  The weather is supposed to push 60 this weekend!  But, oh, how he misses Toby and Cosmo.  Don texted a picture of Toby Wednesday night, but he'll probably need to send more.

I may (or may not) post anything this weekend.  If so, the blog will shift into travelogue mode, unless there's any news about Michael.  Feel free to check back, but I think mostly we'll be enjoying a brief reprieve from the excitement of the week...

Well, That Was Not Expected

When last I wrote, Mari Ann and I had established camp in a nice, semi-private area of the Surgical Family Lounge by 8:00-ish.  The status board for Michael (Patient #18791) read, "In OR":

Two hours later, the status board read the same thing.  I asked our liaison if it was current and he called the OR to learn that Michael was just then being "draped and prepped" for surgery.  We believe the surgery did not actually begin until 10:45.  After that, the board read, "Surgery Started":

I got busy on my "projects" and Mari Ann played Solitaire on her iPad.  At noon, we were called into a conference room to talk with Dr. Gardner.  "Wow," we thought, "he's done already!"  The last thing we expected were these words to come out of his mouth, "We've stopped the operation.  His heart was showing signs of strain."

After bits and pieces of news all day long, we were able to piece together what happened.  Apparently, the anesthesiologist left the operating room once the surgery commenced and his student noticed irregularities with Michael's heart.  Cardiology was alerted and from that point on, he became their patient.  We think he was never in any danger; they stopped before it got to that point.  However, they could not be sure he didn't have a heart attack.

So this became his status around 12:50, "To ICU":

After waiting in the tinier, less private, ICU waiting room, we got in to see Michael around 2:00.  Bless his heart, he was still groggy from the anesthesia, but he thought he was dying.  He said he woke up to "chaos".  But he was only concerned for us and said he didn't want anyone to fly in.  At 2:50, we saw the ICU doctor, who added some details to the basics Dr. Gardner told us at noon.

Settled safely in ICU, Mari Ann and I ran to grab something to eat in the cafeteria.  When we returned, Michael's head was clear and he sounded a lot like his old, perhaps a little less sweet, self.  His nose was draining blood and he complained of congestion, but that was relieved when he finally coughed up a blob of bloody goo.  He drifted in and out of sleep.

At 5:45, we learned that a trauma patient needed his room in ICU, so he was moved to Neurology ICU.  We met up with him there just before 6:30, at which time we had to vacate ICU for two hours.  (No visitors between both 6:30 and 8:30 am and pm.)  Luckily, though, by this time we had met the cardiologists and saw Dr. Gardner once again.

The primary concern for the 24 hours following the attempt at surgery was to watch Michael's heart and learn whether or not he had a heart attack.  The cardiologist and Dr. Gardner were hesitant to guess what would happen once that was determined; however, Dr. Gardner did say that the POSSIBLE best case scenario would be that Cardiology releases him today (Friday) and the operation is re-scheduled for... next week.  (Earlier, he suggested it might be a go back home, return in six months kind of thing.)

Michael is very disappointed that he still has the little friend in his head; however, he has not wavered in his desire to complete the operation.  His biggest problem in ICU has been that it's so darned cold and he could not eat or drink after midnight because of the tests being performed on Friday.  He'll hate me for posting this, but it's for you all to see that, except for his white gauze mustache, he is honestly doing fine:

What we know today is that at around 11:00, Michael's stress test began when he was injected with the tracing material.  At 12:30, he will be taken for photos, then will be given a drug to expand his arteries, after which they will take more pictures.  If there's any sign of heart damage or disease, the arteries will not expand.  There is no indication that he won't pass the stress test; his enzymes are "fine" and his overnight EKG was "completely normal".

They are doing this kind of stress test... a "chemical" stress test because we're not sure Michael could maintain his balance for the duration of the standard treadmill stress test.  We laughed; it's the lazy man's stress test.  Results will arrive within 30 minutes following the entire 3-4 hour process, but that doesn't mean we'll learn the results within 30 minutes.  If Cardiology releases him, we'll meet with Dr. Gardner and decide what happens next.

Anything else at this point would be speculation.  That's typical of this entire ordeal... we've never quite been able to answer the questions that everyone wants to know.  Although I'm sorry I can't satisfy the curiosity of those concerned, I am not too concerned myself.  If it's baby steps, that's fine with me... as long as with each one of those steps, Michael is still here with us.

Post Pre-Op Report

This one will be for hard-core followers only.  Michael said people don't need to know every little detail, but for me, this is a good way to document everything.  If you're bored, you can look at the pictures and move on.  (However, there's a surprise at the end!)

To say I woke up at 3:30 this morning would be to suggest that I actually slept last night.  It's more accurate to say that I opened my eyes at 3:30 this morning to see how close to 4:00 it was.  I drove us to Presby today since the shuttle doesn't run that early.  Michael was quickly registered and admitted.  Mari Ann and I had barely set down our things in the Surgical Family Lounge when they were ready for him in pre-op.  I got to go with him for the confusing parade of doctors, nurses and technicians who saw him for their singular purposes.

• 5:27  Surgical Family Lounge
• 5:35  Pre-Op (fashionable open-back gown replaced jeans and t-shirt)
• 6:08  Donna (nurse) completed vitals.
• 6:11  Dr. Caldwell (anesthesiologist) introduced himself.
• 6:19  Tom (?) asked about blood work; yesterday, Michael's platelets were apparently a "smidge" low.
• 6:21  Dr. Monaco (works w/Dr. Gardner) introduced himself.
• 6:55  Dr. Gardner stopped by and signed-off; mentioned Michael will probably be in ICU only overnight.
• 7:07  Dr. Caldwell visited again; had to go look for his anesthesiology consent form.
• 7:11  Susan (?) attached IVs.
• 7:20  Christine (nurse) came by to make sure everything was signed. 
• 7:22  ??? returned with blood test results; platelets are still "on the low side"  (That just means they'll be prepared to give them if needed during the operation.)
• 7:42  Yvonne (anesthesiology student) asked Michael the same questions everyone else had asked.
• 7:46  Emily, who will be Michael's nurse during the operation introduced herself (really sweet; was able to calm Michael's nerves a bit).
• 7:50  Michael was rolled away from me and I found my way back to the lounge.

And here we sit.  If you've gotten this far, our phones are off in the lounge, but we have great wi-fi, so we'll communicate by email, Facebook and blog.  Now's the time for those prayers and good thoughts, of which there have already been many, and for which we are so grateful...

And now, your surprise!  Undoubtedly perturbed by my all-out media coverage of his operation,  I nevertheless convinced Michael to record a brief message for everyone who's been thinking and reading about him.

Finally Some Information

For the first time on this trip, we had to set the alarm so we could wake up to catch the 7:36 shuttle to Presby.  It was another hour-early arrival to an appointment; however, getting in early to see a doctor would remain a distant memory from the day before becuase we didn't meet Dr. Gardner until 11:28.  As we would learn, it's in-and-out for testing, but if you want to talk to someone who actually knows something, time is more elastic.

 

First impression?  SO YOUNG!  Nothing makes you feel older than to know a "kid" is a frickin' brain surgeon!  But I guess we all reach a point where instead of looking up to our elders, we have to trust our children.  And he's so good-looking, like a blonde Clark Kent.  Even his partner, Dr. Fernandez-Miranda, from Spain, was very attractive.  I trust their expertise in the operating room goes beyond their pleasing appearances.

 

So, here are the deets:

• Check-in at 5:30 am
• Operation at 7:55
• Operation could last 2-6 hours
• He'll be in ICU for probably 2 days
• Probably will be here 7-10 days after tomorrow
• His nose will be "packed" for healing for at least 3 weeks (he'll have it removed in KC)

Details of the operation are pretty much what we already expected, except we learned that an ear, nose and throat guy will be assisting.  He actually opens the sinus so Dr. Gardner can get in.   He also removes a bit of the skin inside Michael's nose to cover the entry point afterwards.

 

Dr. Gardner was curious about a new raspiness in Michael's voice, so he sent him to see Dr. Wang (pronounced Wong).  Apparently, a symptom of this tumor is that one side of the vocal chords may become paralyzed, affecting speech.  We got right in to see him; didn't even have time to complete yet another sack of paperwork.  But we learned there is nothing wrong with Michael's vocal chords.  However, the nose scope revealed a polyp which Dr. Wang is "going to take care of".

 

Of course, it's obligatory for the doctor(s) to remind us of the risks.  Although there may be many, the likelihood of any of them really happening is minimal.  Most possible would be some spinal leakage as some of the flakes of skin from his tumor enter the bloodstream.  He would recognize this in the form of meningitis, albeit an easily-treatable version of it.  We'll have to watch for dripping from the nose or back of the throat and severe headaches, which might not appear for several weeks.

To summarize what will be happening inside Michael's head after the opeartion, let's use Dr. Gardner's analogy that the base of Michael's brain is like a sponge with an orange resting on it.  When the orange is removed, the sponge expands.  This is what will happen in his head.  Everything that has been compressed will spread out to fill the space.  I don't know how long it will take to happen, but Dr. Gardner said it will begin happening immediately.

 

At several points today, Michael was exasperated, saying that he just wanted it to be over.  But he seems to me to be in a better mood today than he was yesterday.  We'll all be glad when it's over.  And that will come soon enough...

No Liquor in Pennsylvania Homeland

Michael often begrudgingly watches my TV shows with me, but there are a couple he truly enjoys.  Homeland is one of those.  And his mother shares our enthusiasm for it, as well.  So I wish someone had been here to take a picture of the three of us huddled around my iPad as we watched it tonight!

It felt really good to relax and, since it is such an engrossing show, I think it took Michael's mind off the operation for almost an hour.  He thinks about his procedure constantly and should Mari Ann or I shift our focus, he reminds us that we are here for him... we're not on vacation.  I can't imagine what's happening in his head, both literally and figuratively.  I've just been trying to distract him from it whenever I can.

We stepped foot in our first hospital today: Presby (short for Presbyterian).  A shuttle runs every hour between Family House Shadyside and the hospitals.  Although it was only a 15-minute ride, we opted to go an hour early so we could get acclamated once we arrived.  They seem to do things differently here: since we arrived early, Michael got in early for both his CT scan and MRI.  Of course, we don't know anything else yet; we finally meet the doctor (we hope) tomorrow.

Tonight, we took Mari Ann to a yarn shop, then picked up a couple things at the liquor store, the grocery store and Target.  Funny story... at Costco yesterday, I asked if they had beer and wine.  The worker looked at me like I was insane and said, "No, this is Pennsylvania."  He must have then noticed my Jayhawks sweatshirt and realized I wasn't in Kansas anymore, because he suddenly became very nice trying to direct me somewhere, even though he warned me that it was a Sunday.

We all have things that make us happy.  We got back tonight and I had my Diet Cherry Dr. Pepper, Mari Ann had her Hershey Kisses, and Michael had his Candy Cane Oreos.

Here are some more pictures of Family House, exterior shots this time.  And about a block away, between here and Wendy's, is a nice little... plaza, courtyard, park-thingie with a monument to WWII veterans from this area... "ward", I think it read.  And Michael said not to post it, but of course that means I had to include a pic of his arm prior to his two tests today.

A Visual Tour of Family House Shadyside

Here are some pictures of the common areas of Family House Shadyside.  As I write this, we're sitting in one of them preparing to watch The Amazing Race and The Walking Dead.

Today, I dropped-off Mari Ann and Michael at St. Paul's Catholic Church and found my religion at the comic book shop two blocks away and a shop called House of the Dead that sold nothing but merchandise with zombies... t-shirts, posters, books, etc.

Afterwards, we made it just under the wire to see Life of Pi.  (Tip: be precise when entering addresses into the GPS.  Riverfront is not the same as Riverfront West.)  What a lovely movie that was!  It started slow, but from the ship sinking onward, it was pretty amazing.  I caught hints about the ending being controversial, but have no idea why.  If it's because we get to choose which of two stories is true, so what?  (For the record, I'll always believe the more fantastic one.)

The theater was near a Costco, so we picked up a few things and I made our first dinner at Family House: lasagna and cream cheese biscuits.  And that was our day; exciting, huh?

Arrival at the Emerald... I Mean, Steel City

We left Kansas City about 8:30 Friday morning and drove into the parking lot of our Chicago storage space around 4:30.  Not bad at all.  Traffic into the city was as light as I've ever seen it.  We went to Mari Ann's, then met my sister and her family at Giordano's for pizza.

We left Chicago about 8:30 this morning (Saturday).  The drive was nearly the same distance as KC-Chicago, but seemed to go much faster for our driver (me).  I wasn't as tired and was fueled by my Pandora Radio Pet Shop Boys channel which had loads of great 80s Depeche Mode, Erasure, Duran Duran, The Cure, etc.  It was I-80 most of they way, with wonderful six-lane highways across Ohio.  (Loved the frequent signs instructing trucks and slower vehicles to use the right two lanes.)

Got checked-in at the Family House Shadyside and went to a wonderful restaurant behind the building called Cafe Sam.  Looks like a good, safe neighborhood; the woman who checked us in called it "affluent".  The hospital where Michael is going to have his operation is right across the street.  (And within one mile are a comic book shop and video bar!)

Exhausted and sitting in our suite now.  Much more later, I'm sure, but wanted everyone to know we arrived safely...

Our temporary mailing address is:

5245 Centre Ave., Suite 207

Pittsburgh, PA  15224

And we even have a land line in our room in case we are attacked with an EMP and mobile devices stop working:

412.802.4853

Prognosis After Removal of Epidermoid Tumor

One of Michael's biggest concerns has been about how he will "be" after the operation.  Originally, it seemed his "side effects" would depend on the timing of the tumor's removal... getting it out before it caused permanent damage.  And since the neurosurgeon would be poking around inside his brain, passing dangerously close to the auditory canal, margin for error was very slim.

However, with the less-invasive approach to removing the tumor, the surgeon will barely enter his brain.  We understand that when the tumor is gone, the nerves will expand into their normal space and Michael's symptoms will begin to disappear.

I haven't been able to easily locate specific expected results following the operation; I'm sure it's different for every case.  However, there are two general concerns with this type of procedure.  First is being able to remove the entire tumor.  Second is the possibility of recurrence.  This is old information, but following are some statistics from a 1998 study of 54 patients followed for a 13-year period:

• 57% of tumors were completely removed
• Higher total removal rate in patients where tumors confined to a primary location
• 30% with subtotal removal experienced symptoms again after 8.1 years
• 100% with total removal remained asymptomatic
• 95% recurrence-free survival rate for patients with total removal
• 65% recurrence-free survival rate for patients with subtotal removal

Source:  Epidermoid Facts

What can we conclude?  Well, there's virtually no chance of Michael not surviving the operation or coming out of it physically incapacitated.  Since we don't know how many of his symptoms are truly attributed to the tumor, we don't know how many will disappear or if they'll disappear completely.  And we don't know timing for anything.  The length of the surgery as well as recovery is expected to be much shorter than originally anticipated, but will depend on the patient.

Since Michael is mostly healthy except for the thing in his head, we are assuming the best.  There's really no reason to indicate we should assume anything else.  We may know more early next week when we meet his doctor in person.  I'll be sure to chronicle that here...

Symptoms of Epidermoid Tumors

How did we know something was wrong inside Michael's head?  Well, I'm not sure when we would have noticed had he not gone to the hospital on that fateful day.  But at the rate his symptoms increased following diagnosis, it probably would not have been long after.

The following information comes from Epidermoid Brain Tumor Community website.

Because epidermoid brain tumors grow slowly, they may not cause symptoms or be detected until they have become fairly large.  In the skull base, symptoms can be specific to a cranial nerve being compressed, such as the cranial nerves for smell, taste, vision, facial sensation or hearing.

In general, brain tumor symptoms may include:

• Atypical headaches (Michael has frequent headaches)
• Vision
• Hearing (Michael sometimes feels a vibration inside his ear)
• Dizziness (perhaps Michael's most distressing symptom)
• Seizures
• Sharp pain on side of face
• Facial nerve weakness (Michael says his nose is numb)
• Difficulty swallowing (another distressing symptom Michael experiences)
• Aphasia (speech word find, slurring, understanding words)
• Weakness or paralysis in part of the body
• Taste senstation
• Limb sensation (Michael experiences weakness, tingling and numbness)
• Changes in sensory perceptions
• Changes in personality and/or thought processes
• Abnormal pulse, breathing rates, blood pressure (does snoring count?)
• Difficulty walking or balance issues (along with the dizziness, this has affected Michael at work)
• Fatigue or sleepiness (Michael is always tired)

As I review this list once again, I'm amazed about how many of Michael's... well, "issues"... may in fact be due to his tumor.  I have so often poo-pooed him whenever he blamed something on "the thing in his head".  But will removing it now get rid of all these symptoms?  We'll look at his prognosis tomorrow...

Epidermoid Facts

What exactly is this thing in Michael's head?  The following information comes from The Epidermoid Brain Tumor Community website.

The epidermoid is a tumor-like mass.  An epidermoid tumor is a benign (i.e. non-cancerous) neoplasm of the brain.

In general, there are several ways to acquire this type tumor:

1. By skin cells that are deposited in the wrong place during neural tube closure causing "ectodermal elements" to be trapped.
2. Skin cell penetration, such as a fall, infection, or puncture such as a spinal tap.
3. Radiation exposure.

The epidermoid tumor (cyst) consists of an outer covering (the capsule part of it) and an inner mixture of skin cells and fatty acids.  The capsule is about the thickness of wet tissue paper, and the inside contents are the consistency of cottage cheese.  These tumors are usually slow-growing and generally diagnosed in the middle twenties to the late fifties.  They do grow, but at a slow rate, and if not removed entirely, can grow back.  The most common sites in the brain for these tumors are the cerebellopontine angle and the pituitary area.  In surgery, removal of part of the capsule must often be left in because of adhesion to cranial nerves or the brain stem.

These epidermoid tumors have also been referred to in the literature as epidermoid cysts, epidermoid lesions, intercranial cholesteatoma, pearly tumor, or tumour perlee (French).  Cholesteatomas are an older name and now considered a misnomer.  They are also found in the ear, some being congenital and some acquired.

We're Off to See the Wizard; or, If I Only Had a Brain

Almost 5 1/2 years ago, I was folding shirts for the millionth time while working at Dillards when I got word that Michael was in the hospital.  At work himself, he thought he was having a stroke and went to the emergency room.  During the course of his examination, a large mass was discovered at the base of his brain.

In the confusion that followed, an over-eager doctor wanted to operate immediately.  Calmer heads prevailed, though, and subsequent consulations with a neurologist identified the mass as an epidermoid tumor.  Non-malignant, the tumor was basically composed of flakes of skin that had collected all his life.  Unattached to the brain, the tumor was nevertheless sitting at the top of his spinal cord, pushing nerves to one side.

Now, this tumor likely had nothing to do with the symptoms Michael experienced that sent him to the hospital.  And it likely had nothing to do with any number of symptoms one experiences during the aging process.  However, in the last five years of annual MRIs and appointments with the neurologist, Michael did begin to suffer some notable effects of the tumor's presence, particularly with balance and coordination.

The time has come to have the tumor removed.

Over the years, we've heard different things about the procedure.  Timing seemed to be everything... removing it before it caused irreversible damage vs. suffering potential side effects from the surgery itself.  And the younger and healthier the patient, the better it would go.  We knew at some point it was going to have to happen.

The decision was made to have the operation done at KU Medical Center in Kansas City.  But during a confounding delay in scheduling, Michael waffled and did more research, discovering that the University of Pittsburgh Medical Center is known for pioneering an innovative method for minimally invasive brain surgery.  Rather than drilling through his skull behind the right ear, the tumor can be removed by going through the nose and sinuses.

It sounds impossible, but it's quite fascinating to learn more about this procedure.  If you're at all interested, please watch these short videos.  The first one is a statement from Michael's doctor and the second is an animation of how the surgery works.

from this page, select the video "Minimally Invasive Brain Surgery"

from this page, select the video "Endoscopic Endonasal Approach"

And to read about Michael's doctor, here's a link to his bio:

Paul Andrew Gardner, MD

So Friday we're off to Pittsburgh (via Chicago to pick up Mari Ann) to see the wizard, Dr. Gardner.  Michael's schedule is as follows:

Monday, Nov. 26 - CTA and MRI
Tuesday, Nov. 27 - History & Physical and Pre-Admission Testing
Wednesday, Nov. 28 - Surgery

We'll be staying at inexpensive housing near the hospital campus:

Family House Shadyside
5245 Centre Ave.
Pittsburgh, PA  15224

For the next few weeks, I'm dedicating my blog not to horror movies or comic books, but to the real-life adventures of our journey.  Everyone has been so kind with their thoughts and prayers, but this is where I'll try to maintain an ongoing, consistent message about what's going on, day by day.  Please check back for more beginning later this week...