Home Sweet Home

We are home safe and sound in chilly New Orleans!  Ariyah was quite excited to greet us, but sad to see Rachelle leave.  Since we've come back, she's been pawing at me incessantly (aka tripping me as I try to walk anywhere) and bringing all her slobbery, over-chewed toys to display in my lap any time I sit down.  If those things don't seem to work well enough for her to get my attention, she will walk up to me, sit down with the most guilt-inducing look she can come up with, and place her giant paw up on my hand, or knee, and just stare at me.  Last night she kept sneaking over to the couch when she felt I was not paying her a just amount of attention, and would pop up real quick to lay a big, wet juicy one across Scott's face - much to his disgust.  Since his voice is so hoarse he couldn't really get his point across to Ariyah to stop, and she would just continue to try and excitedly break past his swinging hands to keep up the kissing until I could get a hold of her.  We're going to have to work on that.  Scott is still sleeping this morning and she has been walking up and down the house, whining every time she looks at the bed he's in.  Needless to say, this adjustment is effecting all of us here in the Mackey house.
I know some of you have asked, so we just wanted to let our friend's in the area know that we're up for visitors now.  When Scott's not sleeping (and even when he is during the day I guess) we've pretty much been camped out in the living room watching movies and catching up on our TV shows.  Right now we are VERY thankful for our Netflix account and the internet to keep Scott entertained.  Give us a head's up if you want to stop by & thanks for the continued prayers everyone!
  

The road to recovery

Scott is improving everyday.  He slept the best last night that he's slept all week - a little help from prayers and our friend, Ambien, probably had a little to do with that, so we must give credit where it is due.  Also, since last Saturday Scott has not had one dream about cancer to wake him up, so thanks for all the prayers there.
I got up early this morning and drove Abby to the airport to fly home to her hubby and little Easton who have been living without her this whole week.  Thank you to all our friend's up north (Mew, Haylee, Janna, and Ben's mom especially) who helped out so much, making it possible for her to be with us!
Scott has been up and about more and more - little baby steps.  He took his first shower since surgery this morning which was a milestone.  During the day he has been camping out in the easy chair in the middle of the living room here at the condo, while we try to keep up with his growing desire for food and all the drugs. The night we got home from the hospital his body started realizing that we took it's Thyroid away and it's hasn't been very happy about that.  This has been the most uncomfortable thing for Scott since being home, as he is in an almost constant state of unease as his hormones fluctuate.  He has hot flashes like a 45 yr old woman and is then freezing cold 30 seconds later, woozy, and overall just "weird feeling".  He has started the hormone replacement therapy that he will be on for the rest of his life and hopefully his body will even out soon.  We've been told this can take anywhere from a few weeks to months.
Another big milestone today was Scott's first outing since getting out of the hospital - we went right back there for a follow up appointment with Dr. Moley before leaving town.  The doc said he's pleased with everything overall and pathology reports should be back sometime next week.  The plan is for us to be able to do our follow up care in New Orleans, while consulting with Dr. Moley along the way.
SO, overall things are going quite well and we are very blessed by that!  We fly back to NOLA tomorrow and are excited to be home.

Done with hospital beds for a while.

Well I am finally out back into the real world a little bit. By real world I mean condo 1 mile away from the hospital with 2 nurses and tons of drugs. I'm not really hurting much anymore just rather uncomfortable. My entire right shoulder is numb to my ear and my voice sounds like a 70 year old smoker. The brain is pretty impressive at blocking out bad events as I don't remember too much of Monday, I remember it not being fun but I am glad the rest is blocked out.

Dr. Moley was pleased with how well the surgery went, even though it took about 6.5 hours. Leave it to me to have really strange anatomy and make life difficult for them. I still have a small part of my thyroid but he said he got all of the primary tumor off my thyroid so it should be fine. He was worried about damaging my laryngeal nerves on both sides.

Things I learned in the hospital:

-Don't trust anyone except the main Doctor when there are 20 residents and med students following you. They didn't really know what was going on and confused us several times.

-Pain meds can make life bearable if prescribed correctly.

-Marry a nurse who brings her nurse friend.

-Chocolate milk shakes are delicious on a sore throat.

Home Free

Discharge orders have been written.
IV and the last drain on the right just came out.
We'll be leaving this joint in the next hour or so!
We are packing up our belongings & Condo-bound...

An update

Scott's feeling a little better as the day goes on.  The Nurse Practitioner came by this morning and took out one of the drains in his neck that drains extra fluid and blood away from the incision site under his skin.  He still has the main, big one in, but hopefully that will come out tomorrow.  They just came and discontinued his PCA pump for pain and his IV fluids.  He still has a saline locked IV in, just in case they need to give him breakthrough pain medicine.  For now though the Percocet is pulling through for him.  This is such a drastic change from how horrible he was feeling last night and it is such a relief to see.  He also got up and walked in the hall for about three minutes, and was actually concerned about his butt hanging out.  We think this means he's feeling a little bit better.  :)  He's sipping milk shakes and dozing in bed with The Office playing on his laptop while we all recoup from our long day yesterday.   Thanks for your continued prayers!  Please pray for safety for Keith & Elena (Scott's younger siblings) as they drive back to Tulsa this afternoon.

Finished!

Sorry it's taken me so long to update - I know many of you have been waiting for a newer report.  Last night was definitely not one of the more fun nights of our life.  It was pretty miserable there for a few hours as soon as Scott came up from recovery to his room.  But, I'll start at the beginning.
Surgery took longer than we had anticipated - start to finish was about 7 hours (they had booked the OR suite for four hours).  Dr. Moley came out and talked to us around 3:00 when they were almost done and said it went well.  When they were in surgery he said that Scott's right vocal nerve was not working, but by the time he got to recovery it seemed to be fine as he was talking there telling his nurse, "Can I please have some Ice?  I promise I'll be a good boy" repeatedly.
When Scott got up to his room from recovery was when the day really got rough.  He was in so much pain.  The nurses somewhat blew it off at first as he had just been transferred, but as his blood pressure kept climbing as well as his pulse, they finally started taking us seriously.  They finally called the resident after his blood pressure got up to the 180's/100's (his normal is down around 100/60) and I asked them to get someone else.  Thus ensued the process which took much longer than it should have to get him a PCA pump. He got to the room around 6:00pm and finally around 9:00 his pain level went from an 11 down to a 6 and finally to almost nothing as the night went on.  He still has quite a bit of discomfort with swallowing and moving his neck, but it's not the constant intense pain he was going through at first.  I spent the night with him and they were able to give me an extra bed which was so nice.  We were up and down all night with lab draws, vitals, IV fluids, etc but around 3:15am Scott's hunger got the best of him and he decided he was ready to swallow some mashed potatoes.  He also checked his email (it was hilarious to watch him try and focus in his drugged state) and we discovered that he passed Step III Boards!!!!!!!!!!!!
This morning when the residents rounded they said we'll probably be here another night.  Hopefully we can transition to pain meds by mouth only and get rid of the PCA by tonight.
It has been so nice having Scott's family here and Abby.  I'd be rather lost without them for support I think.  Thank you all so much for your encouragement on Facebook and for the love and prayers you've been sending our way.

Here we go....

He's all marked up and they took him back just now to start his total thyroidectomy and partial neck dissection.
 Out comes the cancer!
Start your prayers and we'll let you know when we know more. Thanks for all the love and support everyone!

Week of good news, considering.

     Well, we have safely arrived in St. Louis and are settling into our condo. My family should be here in a few hours and we're getting excited for the game tonight. Megan & I left our house and Ariyah yesterday in the care of our friend's, Rachelle & Kara, and drove to Memphis where we stayed for the night. We went out for some of the best BBQ we've had in a while at Corky's. We got ribs that half the rack was a dry rub and the other half wet. Delicious.  After that we were able to relax in the hotel's hot tub (which was more of a bath tub temperature than hot tub temperature) and enjoy a chill night before heading out this morning to finish our drive.
     And onto cancer talk:  So far we have gotten back many good results from the medical people this last week. I do not have pheochromocytoma (a tumor on my adrenal gland). Good news since about 10% of people with Medullary Carcinoma have it. So no abdominal surgery. Though I wanted one just a little bit because as far as medical issues go that is one of the cooler ones.

     I had a Triple Phase CT of Liver and Lungs this week and there was no Metastasis to the liver which is great news. There are still some spots on my lungs, but it is unknown if they are cancer or just granulomas.

     My calcitonin level stayed about the same so its not increasing exponentially, also good news.

     Oh and to all you Vikings fans.... Brett Favre will be retired tomorrow.

Megan's side note: Please pray that Scott will have better dreams - he dreams about Cancer every single night and it's getting rather old.  Also, that we'll all sleep well tonight so we're rested for our early morning tomorrow.  We head to the hospital at 6am for Pre-Op funness and then the surgery is scheduled to start at 9:00.  I'll be keeping you all posted!

Too Much for Now

Me:  "Scott, there are plane fulls of Haitian orphans being brought to America - poor babies.  Let's go get a baby!  I would take two or three even"
Scott:  "We already have a baby, Megan....it's called Cancer"

Doh!  Guess we'll have to wait on that one for a little while longer.  But my heart does so hurt for them all right now.

Final Countdown...

     One week until go time!  Less than seven short days to surgery, so we've been busy trying to get everything in order to leave town.
     Last night some of our sweet friends here in town threw a Surgery Send-off BBQ for Scott.  It was a delicious event and the eight of us had SO much fun enjoying each other's company and acting like grown ups :)

Discussing life over good wine & red velvet cupcakes

     We're planning on leaving NOLA on Saturday for surgery.  The plan is to rent a car and drive to Memphis where we'll spend the night to break the trip up so Scott doesn't get too pooped.  Then we'll get up and drive the last 6hrs on Sunday morning.  We'll be in St. Louis until Saturday (January 30th) when we fly back to New Orleans.  We've rented a condo in downtown St. Louis, close to the hospital, for the week we're up there, and Scott's parents will be staying with us, as well as one of my best friends, Abby.  For those of you who are in St. Louis we're open to visitors and would love for you to stop by while we're there.
     We have an appointment with an Endocrinologist tomorrow to discuss life without a thyroid, and we should get some of Scott's lab results back as well from last week.  Annnnd that's life for now!  Goodnight!

Who Dat!

Thanks to a little Christmas money from my Grandma, and finding a great deal, Scott and I were able to go to the first NFL playoff game of the season and cheer on the Saints!  We like to think we were the good luck charm in the Dome that helped them win, seeing as how it was my first Saints game to go to.  And of course the fact that God is fan of the Saints probably helped ;)

Tailgating before the game

       Anne, Sarah, me & Sofia

In the Dome!

The dilemma that has arisen for me today though is the fact that we will be playing the Vikings next weekend.  Who to cheer for?!  ....ohhh, who am I kidding?!  Geaux Saints!

Insurance Companies 0 - The Smackey's 1

So today I got confirmation from a Humana employee that their medical director had approved coverage of the surgery at Wash U 100%, as well as all the office visits and hospital stays for the next 3 months. This has come after many prayers and much help from multiple people, namely Dr. Butcher, Dr. Wang and Pam Ryan - who have spent lots of time fighting for us with insurance. We don't have it in writing yet as we are waiting on the paperwork to come from Ochsner, but Megan and I are pretty excited. We were willing to pay to get the surgery done in St. Louis, but we are very blessed and much less stressed out knowing it will be taken care of by our insurance.

Surgery on the 25th

Surgery is scheduled!!!!! In the last two days things have steadily been falling into place. It was as if God was testing our patience, just making sure we can't forget about His hand in all of this. Nice play, it worked. :)

We have a date set for Monday, January 25^th, in St. Louis with Dr. Moley. It's a little later than we were hoping and we were somewhat disappointed at first but it lowers our stress level in getting things such as places to stay, people to watch Ariyah, our work schedules figured out, and greatest of all, insurance waivers to go through. The 25^th is the ''soonest'' day Dr. Moley could fit us in. He rearranged his surgery schedule for that week for us and his wonderful right hand woman, Kim, was able to find us an extra OR suite & staff after some hassling.

Yesterday Scott spent another few hours on the phone and actually had to go into our Neuroendocrin Surgical Oncologist's office and helped the staff there get the waiver submitted for surgery at Wash U to be covered as In-Network (aka – the bill to be paid in full). Humana has “approved” it for Out of Network (something they act like is a big favor and although I'm pretty sure you don't usually get “approved” for Out of Network. That's the point of them only paying 50% then, right?) So, the waiver is submitted and we should know by next Monday what the verdict is.

Scott also got more lab work done yesterday. We're following his Calcitonin levels and testing him for pheochromocytoma. Dr. Morgan, our wonderful family practice doctor, is starting Scott on experimental therapy with low dose Naltrexone (Narcan) – a drug they normally use for Heroine and other Opiate drug overdose. In low, continuous doses it has been showing promising results in other forms of immunodeficient illnesses such as Multiple Sclerosis, Crohn's disease, and some forms of cancer. It's never contraindicated, so we figure it can't hurt to at least attempt to kick his immune system into high gear before surgery. And if that helps kill off a few cancer cells on the way, nice bonus.

Surgery soon (hopefully)

Well, we are trying to get surgery scheduled in St. Louis, however nothing is moving as quickly as I would prefer. It's really, really annoying.  We have the surgeon here trying to get my insurance waiver approved so I can get the surgery in St. Louis payed for, as it should be. Basically we are just waiting on surgery scheduling and insurance approval for the operation. We are still tentatively scheduled for Jan 14th here in New Orleans, so if nothing gets done with St. Louis by then we might just have the surgery here.

We have decided to not go to MD Anderson for a few reasons. Firstly, we found the world expert in St. Louis and are pretty comfortable with him. Secondly, insurance has been dragging their feet about letting us go anywhere other than our in-network Ochsner Hospital, and if we're going to work to go out of network and get it paid for, we'd like to focus our time and energy on St. Louis.  Furthermore, I was really surprised at how MD Anderson treated me throughout the scheduling process basically demanding $18,500 up front just to have a consultation with a physician there or to forget about it.  We know lots of other people have had really positive outcomes with MD Anderson and loved going there, but all of our experiences with them over the phone have been really negative.  So, that's the scoop on that.  In retrospect we're viewing things being so difficult with MD Anderson as a good sign though - if everything had just fallen into place with them we may never have found out about Dr. Moley in St. Louis.

Megan's working as much as she can right now & I'm going to work as many 8hr shifts in the ER as I can before my surgery.  It's just kinda tricky when I spend hours each day on the phone.  Insurance companies suck - I think they may just be getting more sick of me though as time goes on.