Need a good laugh??

I'm pretty sure there's always a good reason to have a good laugh, but right now, everyone in the state of WI could use a good laugh, regardless of your political views or opinions.

This video was posted on Dooce's blog... Huge fan of hers and a friend of mine who introduced me to her brought this video to my attention just recently. Thanks Nan!

If you're offended in any way by drunk babies, please refrain from watching.

http://www.dooce.com/2011/02/18/drunken-sailor

Happy Birthday Daddy!!

Yesterday was daddy's 34th Birthday. I think it was one that he thoroughly enjoyed, as he mentioned it was the first day in a very long time that he was able to just lay low and do nothing at all. The snow / ice storm we had helped us feel better about doing nothing... We all just stayed in, watched movies, played games (Go Fish with Layla's own special rules that she made up with Grandma D), did some art work (with glitter which will likely be found in our kitchen and living room even on the day we have cleaned every last thing out of the house to move to our next home), and watched about 25 episodes of "Good Luck Charlie" (Disney show). Layla also had a pretty intense wrestling match with daddy, which resulted in about 3 to 4 injuries in the span of 15 minutes. It didn't help that she had her glasses off (safety precaution). She kept trying to run away from daddy but because she didn't have her coke bottles on, she wasn't able to see a thing and ran into a door, a door frame and I think maybe a wall at one point. She was a trooper though, and shook things off pretty quick to get back in the ring with dad.

I think the best part of Jake's Bday festivities was Layla's excitement. On Saturday, the day before his Bday, we celebrated with a group of our friends at
BW3's. Layla was so excited and proud of her dad. As everyone arrived she'd sort of take role call, and would announce to us who it was that had just arrived, and then she'd call out the names of the friends who were still on their way. Once everyone was there, her biggest concern was singing "Happy Birthday" to daddy and making sure he got his cake. "We need to sing! We need to sing Happy Birthday to daddy! He needs his cake!" So, after about 29 requests to sing, I gave in and we sang, in the middle of a very busy BW3's, and at Layla's request gave Jake's name to the waitress so that she could have the bar tender announce his name and birthday over the loud speaker so the entire place could show their enthusiasm (or, in the case of those we didn't know him, their 'pretend' enthusiasm). Then they brought out an ice cream sundae for daddy, with a candle, which pretty much made Layla's day. It was awesome to see how excited she was and how proud she was of her dad.

Yesterday, Layla couldn't wait to help me "make" daddy's Birthday cake. For those of you who know Jake, you know that he's not really a sweets fan. BUT, the guy can't resist cheesecake. Any cheesecake really, but I've found that he's a sucker for the classic New York cheesecake. So, mommy "made" (insert wink and giggle) a classic New York cheesecake and Layla helped add the strawberries and whip cream. Then she told me that I could borrow her candles. Very generous. We had Birthday cake before we even had lunch yesterday. :)

Happy Birthday to you Jake!!

Some favorites... Christmas and winter 2010

I'm going to stray from medical posts for a while, in an effort to follow through with my original intention for this blog - to update family and friends on our lives with our little blessing, Layla Jennifer.

I'm VERY far behind on posting very special milestones, events, and holidays that have been celebrated over the past several months. I can't promise that my posts will be chronological, by any means. But that's not really my concern. My focus is to post pictures and updates that were special to us as a family and proud moments for Layla. Some of these will be out of order, but that's okay, as long as they're captured.

These pictures are some of my favorites that were taken around Christmas this year and just shortly after. Some Christmas moments and winter fun. As I look at some of these pictures, I am amazed at how grown up our "baby" looks. And, although I know I'm biased, I cannot believe how amazingly beautiful she is. We are so unbelievably blessed to have such a beautiful, smart, sweet little girl. I'm so thankful that she's healthy and happy and confident.

I'll be posting again later today with a picture of the Birthday boy with his 34th Birthday cake! Happy Birthday to you babe!!!

"Life moves pretty fast...

"... If you don't slow down, you could miss it". What movie people? What movie? You best be getting that one right!

February 16th, already!? It was over two weeks ago that I posted last? Shit... let me wrap it up in a nice pretty little package for you: Over the past few weeks, Jake and I have discussed, in-depth, the pros and cons of me doing radiation treatment. And, after discussions with each other, and the doctors at Froedert, we're still torn on what to do. The decision has been put into our hands, and although we're told that no answer is the wrong answer, we're just not comfortable rolling the dice without more guidance. So, we've contacted Mayo Clinic in Rochester and are in the process of having my medical records, scans, test results, etc., transferred there. I should hear from their scheduling department within a week or so to schedule our appointment. I've increased my schedule at work and am back full time now. Today is day three of being full time, and I'm pooped. The decision to go back full time was mine and no one else's. I felt like I was ready and considering we are sort of in a "holding" pattern regarding treatment, I figured I may as well just hit the pavement. If my body tells me I'm not ready, I'll listen. If we decide to do treatment, I'll scale back (if I need to).

On a different note, I've been thinking a lot lately about my little love bug, Layla, and how much she's growing. She's our little toe head. Our comedian. Our energizer bunny. She has consistently managed to turn a house of stress and worry into a house of laughter and happiness. And I've realized only recently that the journey we've been on has sort of taken over our family. In some ways, it had to. In other ways, it just did, without us knowing. And now my mission is to take over again, and make this family about memories. I am going to be focusing more on regular updates on Layla, her latest and greatest, pictures of her beautiful face and keeping track of milestones for her. As sad as it is, I'm just NOW, after 3+ years of being a mommy, organizing all of her photos and creating photo books online (in the olden days, these were called photo albums; people actually paid to have pictures printed out from this thing called film and they would take the pictures and put them into these clear, see-through, pages inside a book called a photo album). Don't get ahead of yourselves... I'm not going there. I'm ordering photo books off of Shutterfly after I organize everything. But even going the 'new school' route is proving to be daunting. Shit, I should've started this years ago. Better late than never though, right?

Off to beddie bye for the night. Here's to all you hard working, devoted, selfless educators out there. May karma do its work for you and may Scott Walker eat a fat one - flipping idiot box.

Update #2,467 (or so it seems)

Okay, since our last post, I've managed to survive a series of tests, pokes, prods, x-rays, psych exam, jaw exercises (shut it), consults, and bad hospital 'cafe' food. The bad news: It was exhausting and time consuming. The good news: I'm not psychotic (I'm actually just assuming so, as we haven't heard back on the psych exam yet so I'm deciding that no news is good news), my jaw won't be stuck this way forever (if I am diligent about using the contraption they gave me to use on a daily basis, which looks strikingly similar to that gadget the gyno uses to perform your PAP), the lesions that appeared in my lungs (on the last CT scan) are nothing to be concerned about, and the MRI of my spine showed no cancer or tumors. Holla!

So, we are finally at the point in this journey where we can raise our glass and celebrate the fact that for a while, I'm free. Free from the white sterile walls of the hospitals, the constant "beep, beep, beep" you hear in the hallways, that smell that never goes away and seems to stick to your clothes even after you've left the hospital (seriously, what is that? bad breath?), and the overall sadness and worry that lingers in the air in the waiting rooms.

From here, we have one job to do: Decide whether or not to do radiation. Yes, WE have that job. Not our doctors. After receiving our fourth opinion, we were told that although radiation treatment might prolong the time that it takes for my tumor to recur, it might not. There isn't enough evidence to show whether those who've had a hemangiopericytoma (going forward I'll refer to it as an HCT cuz I'm getting carpel tunnel from typing the whole damn word already) treated by radiation went for 5, 10, etc., years before the tumor recurred because of the radiation or not. Let me clarify-there's a 25% chance that my tumor (I'll call her bitch for now, as I haven't decided on her name) will come back in 5 years. A 65% chance it will come back in 10 and 75-80% chance it'll come back in 15 years. Some who have been treated with radiation for their HCTs had their tumor return after 10 years, but there isn't any evidence / research to support the fact that the tumor wouldn't have returned after 10 years w/out radiation. Does that make sense?

Jake and I have yet to really get down to the nitty gritty to chart out the pros and cons of radiation. I have my gut feeling (as of yesterday, four days after our last neuro consult) and I believe Jake does to. Guess what... our gut feelings are opposite. So, we have some discussing to do. I'll be on my way to the booze store just after finishing this post, needless to say. ;) Whether we do radiation or not, I'll undergo "observation" forever (MRIs and CTs on a regular basis). So, if something recurs, we will be able to treat and / or remove the tiny little bitch before she tries taking me down like she did in October.

Dear Ilithyia (hellz yeah I just decided what I'll be naming my tumor... Sparticus fans, you'll understand the name choice. Those of you who don't watch Sparticus, here is her bio - http://www.imdb.com/character/ch0153972/bio. She's one nasty bitch):
You invaded the wrong brain. Your arrogance has led you down the wrong path. You think you are a "rare" flower, that's untouchable by modern medicine, strength, good nature and faith. You believe you have the power to defeat anyone you invade. You are mistaken. What you should be aware of is that since you've decided to invade my body, you have now taken on a lifetime of beatings, abuse, and defeat. I have never been defeated - not by deployment, not by job loss, not by financial woes, and certainly will not be defeated by you. Prepare yourself - you have a long road ahead of you. Find your place in purgatory, because you will not make your home in my brain or body EVER, EVER, again and I will spend the rest of my life laughing at the embarrassing effort you made at taking me down. Regardless of the decision we make on how to defend ourselves to you, we will win. And you will perish.

Opinion #3

Last week, Jake and I attended our first brain tumor support group meeting in Appleton (Fox Valley Brain Tumor Coalition). Yes, we traveled all the way to Appleton for the meeting. Jake's parents were kind enough to drive down from Crivitz to watch Layla while we were at the meeting (Jake's dad even drove me from Hartford to Fond du Lac, where we met Jake, so that we didn't have to drive back separately from the meeting. Having Jake drive from Plymouth to Hartford after school, only to turn around and drive back to Appleton would've been ridiculous). The meeting was amazing, and we learned more than we've learned from all of the doctors we've seen to date. I'll blog more about that specific experience later. In the mean time, I'll use today's post to give you an update on today's appointment, which was with a neuro radiologist at Froedert.

At today's appointment, Dr. Bovi spent a lot of time with us and was very thorough about hemangiopericytomas, what they are, how rare they are, etc. He has seen 7 or 8 of them (which, in his words is, "a lot") and has treated them successfully. We learned from him that although doctors are leaning toward "standard" radiation, that type of radiating will be more focused than we had originally thought (before, we thought that standard meant that they would basically do a carpet bomb treatment of my brain which scared us). He explained that it's actually more focused, just not as focused as gamma ray or gamma knife. He talked more about side effects (some hair loss at treatment site, fatigue, sometimes nausea, etc) and about additional tests and monitoring he'd like to have done. We left his office with four new orders:
1. Neuro-psych (to be sure I'm not turning into a psychotic... kidding. It's to take an exam that will tell them how my brain is functioning now vs. after treatment)
2. Speech pathologist - this is because I still don't have full jaw functionality so they want to have me in some sort of therapy to be sure that jaw restriction isn't permanent
3. MRI of thoracic and spine - brain tumors like to "creep" to the spine sometimes, so they want to be sure I'm all clear there (why has this not been ordered by another doctor before, your guess is as good as mine)
4. Pulmonary consult - to be sure the "lesions" that appeared on my last body CT are what they think they are (scar tissue from severe cough) and not something else (again, see my comment above about other doctors not ordering something like this sooner)

So, this week is our Frodert week. Tomorrow neuro psych exam, Thurs MRI and neouro oncologist meeting (Dr. Malkin). On Wed, Dr. Bovi, the doctor we saw today will meet with his board to discuss my case and make their recommendation as far as treatment goes. He is fairly confident that they will be on the same page as St. Luke's and Northwestern with their "standard radiation" reco, but likes to meet with all parties to be 150% sure. Froedert's pathology lab will also be reviewing my path slides to give a 3rd diagnosis (which, Dr. Bovi believes will for the 3rd time confirm that the tumor is a hemangiopericytoma).

I'll post more later this week about the support group and what we learned there. Like I said, it was amazing, and I'm so thankful to Diane, Jake's mom, for putting us in contact with Darcie, who invited us to the meeting.

More to come... oh, and of course, GO PACK!!

LONG overdue update

Okay people, here we go. My very overdue update on my latest encounters with doctors, overall health, test results and future. My apologies for not keeping this blog more up to date. Before Christmas, I became the proud owner of a smart phone. How does this fact relate to the fact that I haven't updated my blog? Well, for those of you who may still have a "dumb" phone (you know, one that's just used to call people and talk... so archaic), I'll explain. Smart phones make computers look like the old school IBMs that have a huge box backing. You know, the ones that kids under, what, 10 or 15 wouldn't recognize as an actual computer if it hit them in the head? Once you have a smart phone, thinking of actually getting off your lazy ass and walking to a computer, opening it (that's talk for those who have a laptop vs. a desk top), logging in (which I now think is a waste of time for chumps) only to check a few junk emails and possibly post an update to your personal blog, seems like a task equivalent to climbing Mount Everest. ;) After realizing that there are many of you who still aren't up to speed on my latest, I crawled under my bed, dug out the dusty laptop and here I sit, ready to give you my "light at the end of the tunnel" news.

I'm not sure if this is possible, but at a glance, it looks like the last "medical update" I provided was end of November? Is that right? I could investigate further but that would mean taking more time to look through my blog and, well, I don't want to because I haven't ingested the appropriate amount of coffee yet this morning so I'm not functioning properly. If I start searching for the last real medical update, A.D.D. will kick in, I'll think of something different, and wonder off, never to be seen again. So bear with me if I'm adding anything you already know. This is going to be a Cliff's notes version (or as close as you can get to that as possible when trying to include details about cancerous tumors, breast lumps, scans, tests and arrogant doctors)...

In early December, Jake and I went to see Dr. Raizer, a neuro oncologist at Northwestern University in Chicago. Dr. Ahuja, my surgeon, referred us to him after the pathology report showed that my tumor was a hemangiopericytoma, which, Dr. Raizer confirmed for us, is a rare, aggressive and cancerous tumor. Because of how rare it is, doctors decided I needed to be monitored with a series of tests (CTs of body and bone scans, as well as evenly spaced out MRIs). Thankfully, CTs and bone scans came back clean, with one minor blip: a lump in my right boob. Scared the shit out of me and really pissed me off. When I got that news I pretty much said to God, "Are you fucking serious?!" Less than a week after finding out about the lump, I had it removed, and two days after that was told it was benign. Raise your glasses people. Shortly after finding out the lump was non-life threatening, Dr. Raizer confirmed for me (after much stalking and near death threats on my part) that my CT scans looked good otherwise. Fact: doctors don't always give a shit if their patients might be suffering from severe worry, panic attacks or negative thoughts while waiting to hear from them on whether the CTs of your body are covered with cancer spots or not. They just go about their day as if the news they have is equivalent to whether fucking strawberries are on sale at Whole Foods. Dicks. Anyway, that was all good news and a huge weight off my shoulders.

This past Monday, we had my last (or so we're told) MRI that is supposed to tell Dr. Raizer (and his tumor board at Northwestern) as well as Dr. Ahuja at St. Luke's (and his radiation board) which type of radiation they'd like me to undergo. I'm told they'll most likely recommend gamma knife radiation - a one day procedure that focuses on a small, pinpointed area so that the radiation only "burns" the bad cells and tissue vs. the good brain tissue (God knows I don't need to be burning anymore good tissue). This news was a relief and gives me hope that we'll be through this soon. We are told we'll find out by the end of this week, or early next week (which means end of next week). ;)

At one point during my appointment with Dr. Ahuja at St. Lukes, I told him to just tell me what the hell was going on and what we needed to do to get the show on the flipping road with treatment. He started to tell me that the decision they make needs to be the right one for me and my super rare tumor, not one they make for time's sake. As he said that, and I'm not joking here, I reached up, with both hands and put them around his neck, as if I were going to choke him. I seriously had no control over myself at that point. After a second or two, I realized what I was doing and put my hands down. It was then that he told me that my tumor is about as rare as dinosaurs or black diamonds. I'm one of very few in the U.S. who has been diagnosed w/ this type of tumor, so they have to research and treat accordingly (whatever that means). The other obstacle is the fact that surgery really pissed off my brain, so it's still swollen and showing some post op aggravations that make it difficult for doctors to see all they need to. In any event, they didn't see anything "new" on the latest MRI images, which is a good thing. They just need to be able to see past the swelling and fluids to decide where to focus radiation, and to do that they have to upload the images and blow them up on a big screen or something like that.

Anyway, I'm doing well, feeling well, and ready to zap the shit out of the bad stuff in my brain, and take my life back. I'll be heading back to work soon, most likely part time, then easing into my old full time schedule. Looking forward to that, to seeing my coworkers, etc. Oh, and I can drive again! Freedom!!

I'll do better w/ posts, I promise. As soon as we know about treatment, I'll add a post.

To my elders, superiors, professional acquaintances, sorry about the swears. But I've found that swearing is super therapeutic for me so I've got to do it. I promise I won't do it at work, or in any sort of professional / family setting where it might offend (not out loud at least).