8+ weeks later...

Our 8 week anniversary has come and gone.  This is a definite cause for celebration as Dan is doing so well.  The surgery already seems so far behind us.  The meningitis scare and subsequent second hospital stay feels a little more 'raw' as that whole experience was 10 times more traumatic for the both of us.  Even still, seeing Dan feel better than he has in a long time is so awesome and amazing.  The daily problems that the tumor was causing was affecting his overall quality of life more than I realized.  He now leaps out of bed in the  morning -pain free.  The deep side splitting laughter with friends and family no longer sends a shooting pain through his head.  Thinking about taking a long walk, hike or bike ride now sounds appealing instead of agonizing.  We are looking forward to many things without having to worry about a migraine or vertigo ruining our plans.  In the best of ways, it's almost like he is a new person.

Word spread very quickly about Dan's tumor and surgery and the loving support that came from being so open about his diagnosis has really kept our heads above water.  Every time we see different friends for the first time they can't believe that only 8 weeks ago he had brain surgery.  His spirits are high, he looks great, and all of us couldn't be more thankful that things turned out as they did.

In a recent talk we heard, it was said that people who have gone through trials are often the most pleasant people to be around.  They have empathy and fellow feeling.  A type of understanding that can help comfort you.  Never having had gone through this kind of trial before, we couldn't agree more.  The whole journey from the diagnosis, to surgical consults, to pre-operative work ups, to a last minute second opinion that lead to emergency surgery - has helped us to become more understanding of the stress, anxiety, and sometimes utter paralysis that can come from enduring a health challenge or any other challenge for that matter.  Being here at this end of the journey has left us with a true sense of gratitude for all that we have been given.  It almost makes you speechless.

Life has taught us lots of new lessons.  We were fortunate to have such a good outcome.  However, I can honestly say that through all of what Dan has been through he had such an amazing attitude that I can't help but admire.  He never felt bad for himself or asked, "Why me?"  He endured through it all and kept a content and optimistic attitude.  I think it was this positive attitude toward his trial (and maybe one ounce of pure stubbornness....am I wrong??) that got him through it all.  No matter what comes our way it's my hope that we can hold on to this same mental attitude.

"The greater part of our happiness or misery depends upon our dispositions, and not upon our circumstances."

 - Martha Washington

Home, Sweet Home

We were able to get discharged today. Dan ended up being diagnosed with what the doctors call 'chemical meningitis'. It isn't the scary, contagious meningitis; but an inflammation of the meninges (lining surrounding the brain) caused by the trauma of an 11 hour brain surgery. Initially he was on steroid medication to reduce inflammation but had tapered off of that Monday. Wednesday we were back in ER. So it seems like he just needed to be on the steroids for a bit longer. He's continuing the steroids and is on some medication to reduce pain which can all be managed at home. We are headed back up to LA to see the surgeons for a post op follow-up this week sometime. Dan is happy to be home and I'm glad to have him home. The only thing is this hospital stay was a little more unsettling and traumatic than the last one. The uncertainty about what was causing the pain, coupled with the severity of the pain was worse than anything we've experienced. Nothing prepares you to see someone you love in severe pain and not be able to do a thing about it. We are both looking forward to that big sigh of relief when this whole situation is a far and distant memory.

This whole experience has given us a lot of empathy for all those people dealing with persistent and chronic pain. We can't wait until Jehovah 'the God of all comfort' (2 Cor 1:3) will cause pain, tears, and sorrow to be a thing of the past. (Rev 21:4) All of these examples of human suffering will not even be called to mind. (Isa 65:17).

Dan and I have so many things we are looking forward to doing together once this is all said and done. We can't wait to start a new, fresh beginning together with all of this tumor business over with!!

Watching, Waiting, Wishing

Good thing for smart doctors! After culturing some of Dan's spinal fluid to check for infection they found out....(drumroll please) THAT THERE IS NONE!

As boggled as our minds were, we are happy to say that 'possible meningitis' is no longer in our vocabulary. They are going to continue culturing to make sure but with no fever it seems like Dan's pain and nausea was a product of something else.

We got the MRI results back and everything looks pretty good on that side too considering he is only a little over two weeks post op. Doctors are thinking it could potentially be rebound inflammation since he is no longer on steroids that reduced swelling/inflammation after surgery. The neurological team will be consulted on Dan's case to try and figure out the pain he's having. We are happy they are being controlled with medication so most of the time he is pretty comfortable.

His appetite is in full effect which I'm glad to see! We will just have to wait and see what tomorrow will bring. A regular bed opened upstairs so we are out of the room in ER! We loved the nurses there but we are a little more comfortable now that we are upstairs.

A Bump in the Road

Another day, over and done! 18 hours from start to finish...Dan is much more comfortable than he was this morning as his docs and nurses are doing a good job controlling his pain levels. More antibiotics will be fed through his IV through the night to help his body fight off whatever nasty bug he's got in his system. Infection was always a risk for us, we just didn't expect to have it pop up 2 1/2 weeks post op. We figured if it was going to happen it would have already happened. I guess we were just getting so comfortable with things moving smoothly, that this kind of hit us in the same Mack truck way as the diagnosis! It is hard to explain but this bump in the road feels a lot more challenging to handle than that giant hurdle we jumped a few weeks ago. 

But like always, Morgon's fight hard! We are awaiting results of an MRI Dan received this evening and some culture testing they did earlier with his fluids. Happy to say farewell to this long, crazy day! 

Night,

Lauren

Quarantined

Overnight Dan had some severe head pain and nausea which prompted us to make an ER visit around    5am this morning. The doctors here at UCSD La Jolla ordered a CT scan and a spinal tap (eek!) Brave guy, this one is!

Initial results of the CT scan don't show a huge amount of abnormal pressure inside the head but there is a high level of white blood cells present in his spinal fluid. This is consistent with some kind of infection, they just have to figure out what kind and how it got there.

Nurses are controlling his pain and administering some general antibiotics. But it looks like we are getting admitted for at least an overnight stay. We will keep you updated as the day progresses.

8 Days Post -Op Update

Being back home has been so nice!  We've enjoyed being in a much more comfortable setting and are getting much better rest here.  Everyday Dan has felt a lot stronger and is getting his energy back bit by bit.  He still gets fatigued pretty easily but we all enjoy watching his daily progress.  Walking has been his best therapy so far, but on Monday he outgrew making laps around the kitchen island and was ready to make the switch outdoors.  We had a great walk around the neighborhood and really enjoyed the SUNSHINE!

Me & Ray Charles Dan on our neighborhood stroll.

Initially Dan's jaw muscles were really sore because the end of his incision hits right where those jaw muscles begin.  Although he was hungry, chewing food was difficult.  Every day that's gotten a little better and we've enjoyed eating some of his favorite foods.  His taste buds just don't seem to be back to normal yet, so some of the food doesn't taste exactly right yet.  The facial nerve, besides controlling your facial muscles, is also responsible for salivating.  Since the tumor was very close to the facial nerve, it isn't a surprise that taste was affected from the trauma of surgery.  We are so thankful that his facial muscle control wasn't affected that much, but he's been a little bummed that some of his favorite foods aren't hitting the spot like they used to.  

The facial nerve also controls the production of tears.  We've noticed that Dan's left eye which was the affected side isn't tearing up.  For the time being we are using artificial tears to prevent his eye from drying up.  The taste issues should clear up as he heals but the tear production may or may not come back.  We just have to watch and wait.

Getting used to the complete deafness in the left ear has also been another adjustment.  He isn't having much of a problem with one-on-one conversation but in noisy environments where many people are speaking, he has a hard time discerning who is speaking and what is being said.  I'm also getting used to sitting on his right side so he can hear me.  Since he had already lost 30% of his hearing prior to surgery, I was already used to having to repeat myself from time to time. ;)  During car rides it seems to be more difficult for him to discern speech because of the noise and the fact that I'm on his left side as the designated driver.  Docs aren't clearing him to drive for about a month or so until the risk for dizziness spells and vision problems aren't a high risk.

Although he's really not supposed to have alcohol for 2 weeks post-op, he couldn't help but just have a sip or two.  

It's all about the small things.

Tuesday we went back up to LA for a follow up with a couple of Dan's doctors.  His Internist gave him an A+ and said that he looked good.  Then we headed over to the House Clinic to get his stitches taken out.  Initially Dr. Friedman said that the incision looked good but he would like to wait a few more days to take the stitches out.  Since we came up all the way from San Diego he didn't want us to waste another trip and so he decided to take them out.  Dan's stitches were called a 'baseball stitch' and really did look just like their namesake.  He had about twenty in total and they came out painlessly.  

His incision actually looks a little weirder and as we discovered attracts the attention of an older demographic....oh yeah, and has the ability to scare young children.  Yay!!

We are trying to enjoy a little bit of down time as much as possible but for all of you who know Dan, I have my hands full trying to hold this one down.

We have learned so many things so far from this whole journey - the value of a strong mate, the importance of good family and friends, and the power of a positive attitude & strong convictions.  We have gained more empathy for others going through health challenges and chronic pain and have come to know the power of a generous and giving spirit. This whole journey has been totally overwhelming and exhausting but on this side of things we can say it has been an invaluable learning experience that we hope can help others going through the same thing.  

To 6 more weeks of REST & RECOVERY!

Photos

 After consulting with the doctors over at the House Clinic around 9am, we had the opportunity to have some of the best surgeons remove Dan's Acoustic Neuroma.  Dan was admitted through the ER across the street at St. Vincent's and surgery was a GO by 2:30pm.

The first day post-op, nurses had Dan up sitting in a chair eating soft foods.  Fortunately, Dan had no nausea or vomiting coming out of anesthesia and his appetite picked up pretty quickly.

 I love this picture.  It was the first real smile that we got to see and I couldn't help but be amazed at how great he looked. 

 Dan got moved out of ICU on Wednesday and in a regular room.  This was such a milestone!  The doctors just kept chuckling in disbelief about how great he was doing considering how large of a tumor he had.  Between the main tumor and a cyst that was connected to it, doctors had a 5cm monster to take out.  The tumor was causing severe brainstem compression and even the experienced doctors at The House Clinic said it was pretty challenging to remove.  But we got the whole thing!  We also found out this day that The House Clinic is going to use Dan's case for a case study to teach other doctors.  All the surgeons said that they learned a lot from Dan's surgery.  Another doctor mentioned that this was his best 'feel good' case in 10 years!  What a rock star!  

 Dan got right to his physical therapy which includes walking and some balance exercises.  He walked all the way from his room to the main waiting room on the 6th floor.  This is where we all anxiously awaited the good news from the Operating Room on Monday.  

 After getting the OK from all of his doctors, Dan was discharged Friday afternoon!  We couldn't have been happier to make the trip home from Los Angeles back to San Diego.  The car ride which we expected to be a little disorienting for him was great.  

 Here is a little video that I took during the transfer from ICU to a regular room.  Proof that the real Dan was back and ready to PARTY! ;)  Love this man.  

Here is a short video during one of Dan's first PT sessions.

Anyway, that's a little photo journey of our crazy week.  Surprisingly, we are headed back to LA on Tuesday to get his stitches out!  

Discharge Day!

Today was discharge day! We couldn't be more happy updating our blog from home. Dan's on his way to a speedy recovery. Somehow we are all going to figure out how to hold that guy down for the next 6 weeks.

If it wasn't for sheer exhaustion, I would update all of you on the exciting details of his physical therapy and other stories from our whirlwind week. Hope to post some pictures this weekend from the laptop. Dan spent 5 days in basically a dress so anyone looking for blackmail, just email me :)

Love,
Lauren

Day 4 Update

Today was a very active day! We got Dan's bandage off today and the incision looks really clean. He hasn't had really any nausea or dizziness; he is just a little lightheaded and the pain is being managed.  Today was the day he had to begin his physical therapy and occupational therapy. This means he has to make 2 laps around the hospital wing 3-4 times per day and we have some balance and facial exercises to do as well. Each time Dan gets up to do his laps he is stronger and has better balance. During surgery they had to cut the nerve that assists with balance so a little unsteadiness is to be expected. Dan's spirits are high- he's joking around and carrying on conversation. He's getting bored in bed so that's a great sign :) Nurses are saying that he is running a low grade fever again so they are doing some blood cultures and other body fluid tests to make sure there isn't any kind of infection to worry about. The doctors will be coming to do a final exam in the morning to determine if he's ready for discharge late tomorrow afternoon.  We are all looking forward to a more comfortable recovery at home!

Day 3 PM Update

We got moved to a regular room! The transfer didn't happen until around 4:30 so the physical therapy and walking was postponed until tomorrow. Not much other news other than that. He's tucked away right now resting. We are missing the one on one care we received in ICU but hopefully we will be leaving Friday anyway.

He's been craving a caffe mocha, chocolate milkshake and is looking forward to the glass of wine his doctor said he can have after being discharged :)

Day 3 AM Update

Good Morning! Dan is still looking really good today.  He had a low grade fever yesterday that cleared up and they had him transitioned from liquid diet to soft foods this morning. When we walked in to his room in the ICU wing he was sitting up in the chair. They attempted to give him a regular breakfast with pancakes and toast but the trauma to the jaw muscles during surgery has made it a little tough to chew for now. His nurses have been so attentive and whipped up a smoothie for him to drink instead.

During the surgery they took a 'translabyrinthine approach' which means they drill through the bony part of the inner ear. They have to remove the mastoid bone and part of the inner ear bone (specifically the semicircular canals of the inner ear which contain balance receptors). It provides the best results for saving the facial nerve and best results for being able to access the whole tumor. Doctors are very pleased with how Dan's facial muscles are responding. There is a very slight asymmetry that is barely visible and it should improve as the swelling goes down.  I may have mentioned this before but the cons are unrecoverable hearing loss on the affected side and some balance issues that will have to be rehabilitated. All things considered, this was definitely the best approach to take.  

He seems more fatigued today than yesterday because they are trying to increase his activity level. We are looking forward to him getting moved out of ICU in a couple hours. There some physical therapists will get him up and walking late this afternoon. We are all very anxious to see how his balance is. Doctors are hoping to discharge him Friday!! 

Day 2 3:45pm

The nurses just sat Dan up in a chair and have him on a liquid diet. He's up and somewhat talkative although fatigue sets in easily.  Right now they have him resting and he will remain in the special ICU wing for another night before being transferred to a regular ICU room. The doctors will still get him up and walking tomorrow.

Day 2 Post Op

Hey Everyone! We were able to have a big sigh of relief today having the surgery behind us. Things wrapped up around midnight as scheduled and Dan was admitted into ICU. He had a good night considering the trauma his brain went through. Besides having to manage the pain with medication, he has had very few post surgical complications so far. Coordination on the affected side is good and doctors said facial weakness/paralysis will not be a long term outcome.  Dan had the best surgeons possible working on him and we couldn't be more thankful that they took on his case at the last minute like that. Both doctors said they have never had a preliminary consult with a patient and headed into the OR on the same day. It was a miracle that the whole process moved so smoothly.

I had the opportunity to talk with both surgeons this morning and one of them mentioned that this was the best feel good case he has had in 10 years. The size of the tumor was considerably large, yet the deficits that they would expect to see are very few.  Since they were able to remove the tumor completely, they don't expect Dan to have to go under radiation treatment in the future.

I just saw him as he was getting wheeled in for a standard MRI follow up. Doctors are expecting him to sit up in a chair later today and be walking with the assistance of a physical therapist tomorrow. He still looks like the same old handsome guy we all know and love. I'm relaying all of your well wishes and thoughts to him.

Dan is very sleepy because of the medication and so guests are limited to immediate family for now.
We seem to be through the thick of it but should be up here in LA until the end of the week.

Lo

Night!

I got to see Dan in ICU and he has two amazing nurses taking care of him. He was coming out of anesthesia pretty well.  There was a chance of facial paralysis with the surgery, but they were able to do a good job of avoiding that as a long term outcome. Can't wait to see him again in the morning . We are all hoping he gets a night full of rest and recovery.

Lauren

10:20 Update

OR called and the tumor is out! All went well from what they shared with us so far. Docs are closing things up and should be in ICU recovery in an hour or so. Thanks for keeping us in your thoughts and prayers.

Brotherly Love

Jehovah's organization is amazing. Being outside of our home town we had an amazing visit from an HLC brother from here in LA.  What an amazing provision that is provided. It makes your heart swell  to experience the love that our fellow brothers have for each other. It is a sincere, deep, surpassing love that cannot be found anywhere else.

Psalms 34:4 "I inquired of Jehovah, and he answered me,
And out of all my frights he delivered me."

8:45pm Update

The surgical nurse called the waiting room and said things are still moving along nicely. Our neuro-surgeon is still working on removing the tumor.  At this point any tumor that was occupying the inner ear canal has been removed and they are now working on the part of the tumor that is pushing against the brain. Because of the method they are using to access the tumor, Dan will be completely deaf on the left side but it increases chances for 100% removal of the tumor. All things considered we can say that all the news we gotten so far have been positive. The anesthesiologist on staff also gave us a thumbs up.

Family from both sides are here keeping me company as well as HLC brothers from San Diego an LA. I am definitely feeling an inner peace and calm that I can only attribute to your prayers an Jehovah's help.

Looking forward to more good news to come our way.

Love,
Lauren

6:00pm Update

Doctors just called with an update and so far so good! The tumor has been exposed and the neurosurgeons are now working to remove it. In the doctors words, "Everything is going smoothly so far."  Thanks for all your prayers and messages of love. Right back at ya! 

Love, 

Lauren

Road Trip

Today we left for LA to consult with a new doctor from The House Clinic.  This clinic specializes in operating on Acoustic Neuromas and has the best doctors in the field.

Once we arrived the doctors took a look at Dan's MRI and soon we had three doctors consulting with us about the possibility of having the surgery today.  They were concerned with some swelling that the 5cm tumor was causing on the brainstem.  As rushed and quick as it all was, the opportunity to have some of the best neurosurgeons work on Dan was right in front of us.  It took us all by surprise but Dan was admitted to St. Vincent hospital across the street.

After being processed through the ER, Dan was wheeled into surgery. We have utmost confidence in our doctors and have no doubt that this was the best solution to this problem.  Surgery is scheduled to last about 10 hours so we should be wrapping things up around midnight. We will keep all of our friends and family updated through this blog. Thank you for all of your thoughts, prayers, calls, texts and concern. Please feel free to share this link with others.

Much love,
Lauren

Did you say Dubai?

After the initial consult with our neurosurgeon, he asked us to see a Hearing Specialist.  Since hearing loss is a symptom of an acoustic neuroma, he wanted to see how much hearing Dan had already lost.

We sat down in two adjacent seats in the waiting room, picked up a People & Men's Health magazine and took a moment to take in our surroundings.  Having never had any real health issues before, we now found ourselves surrounded by a population of patients 40 years our senior.  We just had to look at each other and laugh.  We've learned that sometimes if you don't laugh, you just might cry.

The hearing specialist took us back to a sound proofed room.  She put some kind of device in Dan's ear to measure how he responded to stimuli.

Then it was exam time!  I exited the room and Dan put on a headset.  The woman put white noise in one ear and talked into the other ear at various frequencies.  Dan had to repeat the word that he heard.

Practicioner:  "Coffee"
Dan:  "Coffee"

Practicioner:  "School:
Dan:  "School"

Practioner:  "Car"
Dan:  "Car"

Practicioner:  "Cowboy"
Dan:  "Did you say Dubai?"

Hmmm....I don't think you can ask questions in this type of exam.  But, he did his best!  Results?  Dan already lost about 30% of his hearing on his left side thanks to this little monster.  Unfortunately the 30% is not recoverable.  One of the risks of surgery is complete hearing loss on the affected side.  Not a guarantee that's going to happen but we will have to see.  In any case, we are continuing to have positive thoughts and confidence in our doctor.  

Yep, that's it!  You don't need your PhD to spot that one!

Something old, something new....

I started this blog several years ago while working in the health and wellness field.  Fast forward to 2013 and this same blogspot now has a newfound purpose.  

As many close friends and family may know, Dan has had chronic headaches for a while now.  A long while now....As a professional WedMD'ers we realized that headaches 'are rarely a sign of something more serious'.  His headaches were diagnosed as a pinched nerve, muscle tightness, a spine that was out of alignment, and the list goes on.  When his headaches joined other symptoms like dizziness - that was attributed to low blood sugar.  However, late last year when headaches joined a family of other symptoms like tinnitus, lack of balance, and nausea we realized it was time for some real professionals.

After consulting a neurologist, Dan was put on some medication that should have alleviated his chronic tension headaches.  After a few really severe migranes, the neurologist recommended we get an MRI to rule out anything serious.  We scheduled the MRI for the Monday Dan returned from New York a few weeks ago.  The MRI was at 9am.  By 9:30 we realized that Dan's headaches had been a sign of something more serious.  In fact, something very serious.  Dan was diagnosed with a 'swollen mass of tissue in the brain'.  A tumor.

Within 24 hours of being diagnosed with an acoustic neuroma, Dan and I were consulting with a neurosurgeon to find out how to get that thing out of there.

An acoustic neuroma is a slow-growing, benign tumor that originates in the vestibular, or balance nerve, connecting the inner ear to the brain.  The balance nerve runs beside the nerve of hearing and the facial nerve which controls movement of the facial muscles.  These three nerves travel through a bony canal known as the internal auditory canal.  

Here's a diagram to show you what I mean.

Fortunately, these types of tumors are benign (non-cancerous) and cannot spread to other parts of the body.  However, unless radiated to stop growth or removed - they can cause a lot of damage.  Since Dan's tumor is already 5 cm in size and compressing his brain stem, surgery was now the most important thing to cross off our list.  And ASAP.  

We have an amazing doctor who will be performing the surgery on February 6th at Scripps Green in La Jolla.  The surgery is long and complex - about 8-12 hours.  I will relate the details of the surgery on a separate post.  But until then this blog will serve as a way for me to keep all of our amazing friends and family in the loop.  We love all of you so much and appreciate the many phone calls, texts & prayers!  

Dan, we ALL wish you wellness!  

Psalms 112:7  He will not be afraid even of bad news.

His heart is steadfast, made reliant upon Jehovah.