Living My Dream

What A Week It Was

Hi everyone - this is Suzy's husband Tom, with what I hope and expect to be my final posting on Suzy's blog.

This has been an amazing crazy week, with plenty of ups and downs but thanks to our faith in God as well as the doctors, I believe Suzy will eventually be as good as she ever was.  I would be remiss not to credit the faith, prayers, support and comfort that so many of her friends and loved ones provided; I believe that your good vibes eased Suzy's nerves and strengthened her will throughout this process.  For that, I am (we are) very thankful to you all.

I don't think I ever explained what was going on with those headaches from Wednesday and Thursday.  As it turns out, Suzy was experiencing a major spinal headache.  When they performed the operation, the doctors inserted a spinal tap to allow her cerebrospinal fluid (CSF, or simply brain fluid) to drain.  After the operation, this tap was leaking -- not bad, but just enough to cause a spinal headache.  On Friday afternoon, they performed yet another procedure to patch the leak using her own coagulated blood.  Anyone that has had an epidural before may be familiar with spinal headaches --- they are supposed to be like a migraine times 100.

OK, so Suzy's frontal headaches are gone, but now she is feeling the effects of the operation and trauma to her neck muscles and back of her skull.  She is also learning to walk and do the things that we take for granted everyday with only one balance nerve.

She is back on her iPhone (I can't keep it away from her) and even blogging again (see below)...but progress will be measured in weeks and months -- not days.  We still have quite a long road ahead, but we have plenty of support from so many friends and family members.

I am so grateful this turned out the way it did -- as you may know it could have been much worse.  Thanks for reading - thanks for following - and thank you most for your support and comfort.

Graciously yours from St. Vincent's Medical Center staring at the Hollywood sign in the distance...

tp    6/30/2012

Jun 29, 2012

Today is Friday -- my first day semi-coherent. Thus far I've been grumpy and angry, but today they put a blood patch to fix the leak of CSF fluid from my brain into back....and now I'm a happy non-grumpy woman.

With my spinal fluid headache behind me I finally feel like what I thought a brain surgery patient would feel like...and this ain't so bad.  Bring it on!  Just got up for the first time and ahhh the joys of peeing in a toilet.  Hoping it's mine by Sunday.  Thank you so much for all your prayers. If my face wasn't working plus I had this ugly scar I might have to hide under a rock for a while but I'm going to wear it out proudly.  Cause I'm proud of the path it has taken me to get it out.

And life is so much sweeter when you have gnarly scars to make you realize just how wonderful it is to be alive!!! Love you allllll so much!!!! Suzy

Two Steps Forward, One Step Back

Happy Thursday. 

I was hoping that Suzy would be back up and running (and posting on her blog) by now, but she is still in the Intensive Care Unit.

Suzy is experiencing some horrific headaches that appear to be migraine related -- and the doctors are keeping her medicated to battle the pain.  I keep my fingers crossed that she will be released from the ICU and to her own private room by this afternoon. 

The good news is that her facial nerve is still performing as we have hoped (the nerve swelling is still going down) and the vertigo/dizziness is not as extreme as we originally were expecting.  Hearing is still yet to be determined.

All is not miserable -- when Suzy is awake and pain-free, she is a her usual happy self.  I am so fortunate to have such a loving and strong wife.  I just hope and pray that her headaches don't linger too long...they really seem to be pretty bad; and she's much tougher than I would be.

Oh My Aching Head!

Quick update on Suzy's progress.  She had a pretty restless night of sleep last night and today is probably the worst day of pain she will experience -- this is pretty normal according to the professionals. 

Despite the pain, Suzy is in good spirits and she still makes me laugh.  The doctors are giving her Dilaudid to help with the pain -- come to think of it, the Dilaudid is probably the key to her good spirits.

They removed her spinal tap this morning -- this was perhaps part of the reason her head hurt so bad.  Our brains float in our skulls -- and when that brain fluid (cerbrospinal fluid) is drained from a tap, the brain tends to stretch....which causes the pain.  Then again, a 1.5" hole in your skull hurts pretty bad too.

This was Suzy last night shortly after the surgery was completed -- her good friend Lori performed some ninja photo skills to briefly get a camera in and out of the ICU.  As you can see, she is smiling and both sides of her smile are curving upward --- which is fantastic news.  Hearing seems to be there, but we won't know for sure until that big old bandage comes off.

Thanks to everyone for their nice comments and support through this procedure; Suzy certainly has a lot of friends around the world that care about and love her.

Next stop, OUT of the ICU tonight!!!  (hopefully)

Suzy And Her Pesky Acoustic Neuroma

At 2:30pm, Dr.'s Schwartz and Luxford from the House Ear Clinic completed their surgery on my beautiful wife Suzy. 

It appears as though they were able to remove the entire tumor and they explained that her facial nerve has remained completely intact with what appears to be no facial paralysis.  They also conducted initial brain response tests and early indications are that her hearing is at least partially working; this is huge, because we went into this thinking that her right-ear hearing was going to be gone for good.

One thing to note is that Suzy is dealing with an immense amount of pain tonight.  The ICU is keeping her medicated but with the retro-sigmoid procedure, the process of removing the tumor is quite a bit more invasive but gave Suzy the only shot at retaining any hearing.  In other words, the pain is worth it. 

Suzy will also be dealing with quite a bit of vertigo for the next few days/weeks as her right-side balance nerve is no longer there.  She will eventually learn to live with one balance nerve and will end up being much better over time.

As I sat at the House Ear Clinic yesterday, I read some interesting factoids on hearing loss.  One hit me especially hard: “on average, people wait seven years after discovering they have a hearing problem before they begin to seek help”.

Suzy discovered her acoustic neuroma purely by chance – aside from a case of tinnitus, her hearing is exceptional but her balance has been a little weak for a few years. 

If you or your loved one has tinnitus (ringing) in one ear; bouts of imbalance and/or vertigo; facial weakness or numbness --- seek help TODAY. 

Acoustic neuromas, though rare, are one of the more common types of brain tumors.

http://www.houseearclinic.com/eardisease/acousticneuroma

http://www.livestrong.com/article/167325-acoustic-neuroma-diagnosis/

We are so grateful for the outpouring of incredible support from the many friends, family and even quite a few people we have never had the pleasure to personally meet.  Thank you all and look for Suzy to come back online very soon!!!

Hi everyone, just a quick update to anyone following my wife's blog. Suzy was taken into surgery this morning at about 6:45am. It's 11:00 now and so far, so good --- I think. At least I'm hoping "no news is good news".

She showed both courage and humor this morning as they wheeled her down the hallway towards the operating room, making us all laugh as she was approaching the most serious operation of her life.

More to come....

Pre-Op day

Hello friends! Thank you so much for all of your prayers and nice messages on my last post. I would like to respond to each one, but I ran out of time. I will try to do so when I get back in a week or so. Today I am at Pre-Op apts all day. Three ear/brain wave tests, meet with both surgeons, have a full physical and meet with the internist. The goal is to make sure I am healthy enough for surgery and to choose the best surgical method: the one that could save my hearing and the one that will destroy it in that ear. There are pros and cons to each so these tests today will help us understand what chance I have of saving any usable hearing. The test I just has is called ENG and it was miserable! They shoot hot and cold water in your ears and try to cause you to have vertigo so you can vomit all over the floor. While you are spinning they make you say names starting with each letter of the alphabet. I must confess, I was so miserable, I got a little creative when I got to F. And I'm NOT a swearing girl. I need to go to confession... I'll include a couple pics from our exciting day. My husband will update my blog tomorrow after my surgery. Thank you all again for your well wishes and prayers! They mean the world to me!!!! Xoxo

Update: We are going with the Retrosigmoid approach. This was always my preference. The good news is it could save my hearing which is still perfect or at least some in my right ear. The bad news is recovery will be tougher, especially for the first week. Also, post operative headaches and neck pain is common. But I'm ready for short term misery to have long term success, so bring it on!!!

Ten Day Countdown...

I have purchased a new bed and new bedding. I bought myself two new robes and nightgowns. I have an apt to have my hair colored. I'm getting my carpets cleaned. I bought some new sketch books and markers and they are all organized next to my new bed. I'm almost ready with ten days to go! So what to do with my extra time? I am working hard on cleaning my house. Every single nook and cranny!

It makes NO sense to be doing the things I am doing such as filing that had piled up for the past eight years. I guess you would call this nesting. I should be out walking the dogs and spending time with my kids. But no, I'm obsessed with having my life in total order before the surgery.

This was bed delivery day before the bed was made up for sleeping in. But Mayzie wanted to try it out.

Here is Annabelle on the counter in Macy's taking a little rest while we are buying our bedding! (yes, I take her everywhere with me!)

I heard this scripture at church on Sunday and it really spoke to me and has helped me through this time, so I thought I would share it:

 I also really like this one from Phillipeans that was sent to me by a good friend. I will have to doodle it soon!

And with that, I will publically admit that I am scared to death. Some days it seems real and I have a lot of anxiety. Other days I can't comprehend it all so I feel fine (denial). But over all, I'm a bit of a mess as I anticipate what is going to come after my ten day countdown. I am looking very forward to when I am home sleeping in my new bed and the worst is behind me!

I hope you are all having a great week and thanks for coming to visit me. Suzy

Suzy Update, AC Projects, and a Class Winner Finally Announced!

UPDATE: SURGERY IS SCHEDULED FOR JUNE 26TH - WOW, THREE WEEKS OUT! Thanks for all your nice comments on this post - sooooo appreciated! I will continue to update my blog on my progress through this! suzy

I have a question for all of my loyal blog readers (not sure if I have ANY as I don't have a button to follow my blog, but some of you regularly leave comments, which I greatly appreciate). Anyway, back to the question. Are you interested in hearing about my journey through the next couple months regarding my brain tumor surgery? If so, I will use this as a place to post updates and what I am going through. If not, I may be absent for a while as I have temporarily (and possibly permanently) resigned from all my scrapping responsibilities and therefore might not have much to share. Which by the way, makes me very, very sad. I have been in this industry for over eight years (lost count) and have loved every moment! But I did start this as a scrapping blog and I don't want to change directions if that is the only reason people visit. And I can always share my doodled quotes as I am sure I will be making a lot of those over the next couple of months (therapy!).

Since you haven't yet had a chance to respond to this question, I will update you on my health. Since realizing I need to get surgery to remove the acoustic neuroma in my head, I have been reading way too much on the internet of people's experiences with this surgery so I am well prepared. I have been on the phone with doctors and insurance people daily. And it has been stressful to say the least. I am ready to get this done and am attempting to schedule it as soon as I can be put on the calendar. 

I am going to have my surgery at St. Vincent's hospital in Los Angeles at the House Ear Institute. They are the best doctors around. I have done my research and am very comfortable with my decision. I have an appointment with the brain surgeon on Wednesday and will be finalizing a date which will be in early July. This is a very complicated surgery as my tumor lies on my hearing, balance and facial nerve. Removing it is about a ten hour process, but can be less or much more depending on how "sticky" it is and where it resides once they get inside my head. It involves a pathologist, an internest, an anesthesiologist, a neurotologist (skull based surgeon) and a neorologist (brain surgeon). All of these doctors need to be approved by insurance and that is a very complicated process. Which is one of the reasons I won't be scrapping for a while.

So now you are updated. And if that bored you a bit, I have a couple of American Crafts things to share. Here is a layout and a card I made that were on their blog a couple of days ago. The subject was adding stitching to your projects and I used some machine stitching and lots of hand-stitching on these two. Hope you enjoy them!!!

Supplies: Veridian Vignette Paper (35676) - Sketchbook, Padma’s Pattern Paper (35673) - Sketchbook, Charlotte’s Shade Paper (35684) - Sketchbook, Kristi’s Kraft Paper (35682) - Sketchbook, 6x6 Paper Pad (35696) - Sketchbook, Printed Chipboard Shapes (77290) - Bits, Flat-Top Fabric Brads (85578) - Elements, Draw (42244) - Remarks Dimensional Stickers, Pigment (42241) - Remarks Fabric Stickers, Paint (42242) - Remarks Fabric Stickers, Doodle (42243) - Remarks Dimensional Stickers), Pallette (42240) - Remarks Books

As you have probably deducted from my recent posts, I am really enjoying doodling lately. So I try to add some to my layouts now and then. I hand stitched the border around the outside edge of this page and the frame around the photo using twine. I used Copic markers to shade inside of the stitching. I also added some machine stitching around the photo to complete the frame.

Supplies: Chapter (76224) - Day Book, Pallette (42240) - Remarks Books, Flat-Top Fabric Brads (85578) - Elements, Printed Chipboard Shapes (77290) - Bits

On this card I hand-stitched the border around the edge of the flower design. I made the card using a page out of the Sketchbook Daybook. Super easy to make and had a cute border.

Ok, now on to business...I totally forgot to announce the winner for a spot in the Big Picture Living the Dream class!!! So sorry! There were 23 comments, so I'm off to random number generator to pick a winner - be right back!

Random Integer Generator

Here are your random numbers:

3	

Timestamp: 2012-06-05 03:21:24 UTC

The third comment left on my post was from:

this class sounds like so much fun , thanks for a chance at winning a seat. :)

Posted by: Paula | May 29, 2012 at 11:58 AM

So if your name is Paula and you haven't already won a spot in the class from any of the other blog give-a-ways, please contact me and I will make sure you are enrolled. And if I don't hear from you by the end of this week, I'll draw another name! Thanks to all for entering.

And with that...I will be back on Wednesday with more boring details regarding my upcoming surgery. Wow, I can't even seem to crack a joke today. Bah humbug! Have a great week! Suzy