525,600 Minutes (Times Three)

I can’t believe it’s been three years already. It also kinda feels like it was a lifetime ago. (If you aren’t sure what I am talking about start here, here, here, here, and here. Oh, and here and here.)

Today, I am celebrating my Brainiversary. That’s at least what I’ve decided to call it. Joel gives me weird looks when I say it and, quite frankly, I don’t care. So what am I doing today?

I’m filming my video interview/Q&A for Career Camp! It’s kinda funny that I am talking to Michelle today. If we want to go back to the very beginning. The very moment I started to get concerned that something wasn’t right, I was actually on a conference call with Michelle. I was participating in a continuation of one of her programs. Then, my legs started to tingle.

So I paced.

I didn’t want to end the call, it was just my legs were annoying me and I didn’t really know what to do. So I walked back and forth across our apartment while participating. I remember leaning on things. Pressing my forehead against the cold glass window while trying to stay apart of the conversation happening around me.

Three years and a titanium skull later, I’m finally letting my hair grow out and am mostly not fearful of something else happening. If you want to scare yourself you can read story after story of unsuccessful operations. But why?

Negativity breeds like rabbits. It is easy to go down that hole and never resurface. That can’t be me. That won’t be me. In my third year my goal is pretty simple: get back to running.

Running the half marathon less than a year after surgery was a tremendous feat. But I need to keep going. I need continue the tradition. I’m attempting to get back to running so I can really attempt to set a half marathon PR in late 2014 or early 2015. I’ve been looking at a few races, many of them just happen to be around my birthday!

Here is to a year filled with soap, spas and running shoes!

What I Remember…

“Whatever you do, you have to get a Döner Kebab. Have to.”

“Is there a special store that sells them?”

“They’re usually sold at a little stand or in shops all over town. You can’t miss them. You’re going to love being on base in Germany. It’s such a great area. Oh, try the kebab with and without the special spicy sauce. I prefer it without.”

“Steffanie, I need you to answer a few questions for me. What’s your date of birth?”

“September 19th.”

“Great. What are you here for today?”

I took a deep breath and, with what strength I had left in me, I whispered in a barely audible tone, “Brain Surgery.”

My now favorite anesthesiologist turned away from my bed then and started messing with one of my three IVs. I refused to look at what he was doing. I feared another breakdown. I had already scared everyone enough with my sudden crying outbursts during surgery prep; it was the second time I ever saw my father cry. Thinking about food made me hungry so I just kept looking around the rather archaic operating room for my surgeon – a sign of comfort. The room did not look anything like what I had googled. The avocado green titles looked dingy and there wasn’t any plastic that image search told me they put up for delicate surgeries. In the bluster of getting everything ready, different people, who never introduced themselves, kept entering and exiting the operating room. They would quietly tend to their duties without coming near me. I guess they were nurses? What exactly were they doing? Why were so many people here? Where was my surgeon? Why were you inputting things on a PC and not a Mac? My worry inducing thoughts were irrupted just before another panic attack set in.

“You’re going to start to feel something, ok?”

“I’m starting to feel lightheaded…it feels good.”

My main anesthesiologist came back into the OR; prepped for surgery with his scrubs, “Who’s your friend?”

“Sir Bertie Toughington the III, my friend Allison gave him to me because my husband won’t let me have a dog. Oh, try to find a bratwurst cart…”

Take THAT Whole Foods Lady!

It’s been a productive week. Recovery wise, I am doing super well! I stopped wearing anything covering my scar. If people think the back of my head looks weird, they can deal with it. It’s better for my scar to get air so that is what I am doing. (Take that whole foods lady!) I’ve stopped taking my prescription pain killers too! I’m down to just a few Advil a day which means I can drive and have wine again.

Stitches Update

They are gone! On Thursday, Dr W said they were ready to come out. Given that this is the first time I have ever had surgery and stitches, having them removed was rather nerve wracking. Dr W did a fantastic job. My mom held my hand and watched Dr W remove the stitches. It took about a minute for him to get them out. Joel had to sit in a chair on the other side of the room at the request of the Doctor. (This is what happens when you pass out on him) Having the stitches removed was a funky feeling. It kinda hurt but it wasn’t terrible. I also took a super pain killer about 45 minutes prior to the appointment; I’m a planner, what can I say.

Walking

I’ve got my walk back! I can stand up straight and basically walk like a normal person! Though, I still can’t turn my head very well. Joel said on the way to Hopkins on Thursday, I reminded him of Bernie in Weekend at Bernie’s. When I turn, I have to rotate from the waist, it is rather “interesting”. Dr W gave me some exercises so I can start getting more motion back. Now, I just have to do them.

More from Dr W

Dr W said I am doing fantastic job on getting well. We started talking about a back to work date and have a timeframe in mind. I am not going to jinx myself by saying what that date is yet. He likes how my scar looks and said it is healing beautifully! I don’t have to see him in-person again for 6 weeks! This will be the longest I have gone since November without seeing a Neurologist. I’ll take it.

Mom’s Visit

Today is mom’s last day in DC :-( She is heading back home in the morning. I was hoping recovery would take a bit longer and I would get her for a full month, but I am doing great so I guess this is a good thing. This is the longest mom and I have been together since I was in High School. It has been great having her here. I haven’t had to worry about anything. Now that I am almost fully mobile, it is time for her to head back home to Indiana.

The Next Tests

I’ve been trying to come up with things to do over the next month as I start feeling like getting out more. Basically, I want to push myself but not over do it. I’ve signed up for a knitting class that meets once a week for three weeks. This will be challenging because A- I have no domestic skills (ask Joel) B- I  have to do something I am not familiar with and C- I am going to try to walk there. The class starts on Wednesday evening and I hope I can do it! I tried to teach myself how to knit, but I can’t figure out how to get a second row.

I’m allowed to only walk ’till the 21st and after that I am allowed to try other forms of exercise! I’m thinking of trying running to see how it feels. If it doesn’t hurt, I am going to try to get back to being able to run at least a 5K. If it does hurt, I will give it a few more weeks to heal and try again.

So other than my mom leaving, it has been a great week! I can’t believe surgery happened almost two weeks ago.

 

My Catch-22

This is a bit of a rant; I just need to let it go. Monday night my mom and I went to Whole Foods (or as she calls it Whole Food). I was getting a bit of cabin fever and we ran out of small items for me to eat before taking my meds. We waited till later in the evening when it is less crowded and you can actually find a parking space in the garage. I thought it would be a good trip to the store. I was expecting to be embarrassed by my mom  - that comes with the territory – but I wasn’t expecting this.

To Whole Foods I wore my typical outfit of stretchy black pants that I have been living in. (I love these pants because I don’t need help putting them on or taking them off. It’s the little things.) I had a tanktop on with a zip-up cashmere sweater too. My Uggs were on my feet. To cover my head I strayed from my white hat and used a Coach scarf that Amy (maid of honor) gave me over 5 years ago when I moved to DC. The scarf had been an accessory for one of my handbags till tonight. The hat makes you standout more when you are as dressed down as I was. But, I guess it doesn’t really matter anyways.

I was doing ok with the first few stares. I know I walk like Ozzy Osbourne. I get that that makes me stand out. I am just not as mobile as I was because surgery was just over a week ago and I still have stitches up my skull and down my neck. It is a little odd when I find something I want and have to grab my mother to grab the bananas hanging from the banana tree in the store. I can’t look up and grab the bananas at the same time. Heck, I can’t even look up! What got to me was when we were checking out. I was standing there, putting the items that weigh under 3 pounds on the counter. Then, I walked to the end where the bagger normally stands. As I was heading that direction, albeit slowly, I noticed a lady sitting at a table. She had on a nice Burberry all-weather coat and she was bluntly starring at me! I turned around, started talking to my mom and tried to ignore her. As we were leaving she started pointing to the back of my head!

OK folks – this is NOT kosher. At all.

If you’re 5, I get it. When I was little I embarrassed my parents at a restaurant by pointing and screaming “look mom a clown!” at lady in a polka-dot dress. When you’re in your 50′s-60′s it is beyond inappropriate.

I am not self-conscious about the stitches but I am about being sick. I hate looking sick but I had to get over that as much as possible if I wanted to leave the apartment. It’s my Catch-22. My need to leave outweighs how bad I look. But, could everyone do me the favor and not point it out to me? I’m just trying to blend in for now, I promise.

Sir Bertie Toughington III

Edit: This was suppose to post on Monday but it didn’t for some reason. So, here you go:

******

So who is Sir Bertie Toughington III? He’s my puppy! Today, Bertie accompanied me to Hopkins. Why? Because frankly, I am scared beyond belief. I haven’t written a lot about the actual surgery I am having right now, or said out loud how scared I really am, because all of this isn’t pretty. There isn’t a way to make it sound pretty.

It isn’t as easy as removing a tumor, it is just a little more than that. Right now, they should be removing a portion of my skull. Pull a card out of your wallet and look at it. See how it is fits in your hand? Put that card up to the back of your skull. It is pretty big compared to the back of your head. They are removing a portion of my skull that is the size of that credit card from the back my head. That’s why I am scared. If I don’t do it, my quality of life will degrade. Leading up to the surgery, I just gave myself an ulcer being worried.

What if they miss? What if they clip my brain. We are dealing with the cerebellum here. I’ve read story after story where people aren’t the same after this surgery. I’ve read story after story where their lives are better. What’s going to happen to me still hasn’t been determined. Hopefully, I am still doing well in surgery. I’ve tried my best to reamin positive and upbeat; in all honesty it is so I try to believe what I am saying. I know I have the best person in the Eastern corridor operating on me. As comforting as that is, it is still brain surgery. And I am so scared.

This is why I am glad to have Bertie. Joel can’t be with me all the time (you know his little passing out issue; plus visiting hours) and I need something with me. Something to hold and squeeze when I need to be comforted. I think Scarlet and Mr Darcy are tired of my  “please let me hold you a little while longer” cuddle sessions.

By the time this post goes up, I should be in the last half of surgery. Please think good thoughts for me because, well, I need it. If everything goes as planned, and surgery started at 7:30,  I should be out before noon Eastern. I am hoping Joel will have great updates on his twitter feed. I really can’t wait to tweet “hello” with my new upgraded machinery.

Now some happy photos:

My Big Secret

In my time blogging, I never thought I would have to write a post like this; actually, it is rather difficult. I blog about personal things, like getting married to Joel and mostly things I find interesting. But, this is going to become a bit more personal. I must say, I owe the courage to talk about what is going on to Erin, who you probably know as @queenofspain. She helped me understand that sometimes you just need to tell something to #suckit, like Lupus or brain surgery.

Here it goes: towards the end of 2010, late November to be exact, I started feeling a little weird. I played it off to basically having a desk job during the day and not getting enough exercise. Then, there was a point where I couldn’t even feel my extremities. Yeah, that kind of weird. After ER visits and the many doctor’s appointments that I complained about on twitter, I found out that there is something wrong with my brain (queue scary music).

I’ve tried to find the sliver lining in all of this. The fantastic news is although this sounds horrible, some of the potential disorders I could have had, I have the best life-friendly one. In fact, the doctor thinks that there is a chance my life will get back to normal in the near future. But, to get back to normal, I have to have brain surgery (next queue for scary music). Considering every term and potential issues the doctors have educated me on (and every diagnosis I’ve given myself thanks to webMD) I am beyond lucky. I really am.

In a few days I am going to be admitted to Johns Hopkins for surgery. I would explain what is going to happen, but Joel has already passedout when the Doctor was just describing my brain (I’m going to tease him for years about that). Basically, after a few hours of surgery I should be on the road to recovery. I know my hospital stay isn’t going to be short, but it is shorter than I expected. The one downside is my doctor refuses to answer my requests for installing more RAM. Since he is already going to be in there and the MacBook Pros just got a refresh, I figure I should be able to get one too! It’s only fair.

Recovery is, well, recovery. It outright sucks but everyday I will be getting better. Everyday, I will be one step closer to my normal self and till then, I have my mom and Joel to take care of me. I’ll be blogging more (hopefully) because I will be required to take it easy and stay off of my feet; Doctor’s orders.

I’m going to be handing off my social accounts to Joel. I know how tipsy I get after 1/4th of a glass of wine so I have a feeling high-powered pain medicine and I are going to be a very interesting combo. I’ll be entertaining people in the ICU, that is for sure. You’ll know if I snatched my iPhone. Which brings me to my last point, please don’t hold me responsible for tweets posted directly after surgery.

So, that’s the big secret that I have been keeping. I kinda wish it was a fun secret like getting a puppy or seeing a double rainbow. But, it isn’t.