“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?”
“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…”
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.
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.
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.
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.
“The bad news is time flies. The good news is you’re the pilot.” – Michael Altshuler
I can’t believe it has been 1 week. This time last week, I was sick to my stomach I was so scared. I was holding Bertie as tight as possible because Joel wasn’t allowed in the room during prep. When Joel and the rest of my family were allowed to see me, the Neurosurgeon and both of the the Anesthesiologists for the last time, I broke down. I knew I would. It was so bad that my family was asking them to give me something to calm down. But, I made it. I’ve made it through the first week of pain, agony and learning my new limits. I made it.
Here is what I can do:
- Shower with supervision (my mom has to stand on a step-stool next to me to help me wash my hair)
- Reach my hands straight up in the air (couldn’t lift them after surgery!)
- Walk around to the front desk of the apartment complex without stopping
- Sit up in bed without help (most of the time)
- Stand up a majority of the time without help
- Mom and Joel have stopped following me EVERYWHERE! I only have someone follow me when requested!
On Sunday, we made not one but TWO trips outside. Both were to Del Ray. First, we had lunch at one of our favorite Mexican places and followed it with a trip to the Dairy Godmother. (My mother is in love with their custard now) Our second trip was to meet Maggie of The First Ladies of Baseball. Maggie adopted Winston Churchill from my little sister at Christmas. In between the two trips there was a 5 hour nap, but I think the trips went really well! We didn’t have any issues with either trip.
Although parts of the last week have utterly stunk, I am making lots and lots of progress. So I can’t drive, shower alone and still need lots of help but I’m getting there; that is the important part.
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:
I have this packet that I was handed during my pre-op appointment that I’m scared to open. It’s still in my purse with copies of my last MRI scans. It lists a whole lot of what I am not allowed to do for the next few days, including no pain meds. Ugh.
Speaking of the pre-op appointment, everything went great until they decided I needed more lab work. My appointment was at 10:30 which means I had breakfast at 8 before I left the apartment. By the time I finally got to see the anesthesiologist, it was 11. They sent me to the lab at 11:25 and didn’t get called to actually go into the lab till 12:35. Lab work after a 5 hour fast is not recommended. It lead to this tweet:
Yup, I passed out. I’ve never passed out before. Ever. I learned my lesson: have lunch before waiting on the Hopkins lab.
If passing out in the hospital wasn’t enough for one day, I had my next appointment at my lawyer’s. I created my living will and power of attorney. The good news is that I didn’t pass out at that appointment. I also didn’t cry, so I guess that is my second piece of good news.
Friday begins the day of appointments again. It’s back to the lawyers to sign final documents. Since I can’t do physical things, the cleaners get here to make the apartment. Then, the family starts arriving. My father and sister will get here about lunch time. Kayla, my sister, will be spending time with us till Saturday when she has to fly back for university. I can’t wait till my mom gets here on Sunday. I need her to be here.
What to Expect
Over the past few weeks, I’ve learned a lot about brain surgery, what to expect, how to cope and I haven’t even gone through it yet. One of the best things I’ve done is read a book that Allison sent me: I had Brain Surgery. What’s Your Excuse by Suzy Becker. I am writing this after finishing the first 250 pages, that should tell you something!
The book (and puppy!) arrived Thursday and, well, I was more excited about the puppy. Friday morning, on a whim, I grabbed the book to read on my commute into the city. Thanks to metro I had several extra minutes to become enthralled with the book (look at that positive spin on metro delays; be proud). What I really like about Beckner’s book is she gives a realistic account of what surgery and recovery is going to be like. Granted, I am having a totally different surgery, but it is nice to see everything takes time and how she recovered. I can’t expect to get back to running immediately, heck I haven’t been able to run since November. I can’t even expect the same me. I have to figure out what the new normal for me is now. That, I have a feeling, is going to be tough.
I am hoping for a super easy recovery, but I won’t be surprised if it requires therapists and other help to get back to my new normal. New normal – that’s going to take some getting used to. It’s because after surgery, you may never be the same. That can happen. You never know how your brain being exposed to air is going to affect you and this surgery has already changed me, I can tell. Things that used to stress me out, I could care less about now. Little things that I used to hate don’t even bother me now because they aren’t even on my radar. I’m even writing about what I am feeling and that in itself is a huge change.
Now, for a little lesson on the parts of the brain, by Pinky and the Brain!
**The book was a gift from my friend Allison; not from the author or publisher or a book seller. I was not compensated for this post or asked to review the book. I wrote this because I wanted to.
I did it. I cut ten inches of hair in preparation for D-Day. It makes me feel like I am in control of something. And I’ll take it. Friday at work, it was great seeing everyone’s expression. I guess it is kinda surprising to go from shoulder length hair to hardly hitting my ears, but I like it! It may have to stay this way after surgery.
The End (of Work) is Near
It is weird thinking that I have 7.5 hours are left of work before I am officially on leave. It is strange to not know when I will be going back. I think it will be even stranger when I go for my Hopkins pre-op on Tuesday. That’s it. After that, it is just getting my parents here. I can almost count the number of days left on one hand; my stomach started the “knot process” on Saturday. So many coworkers have commented on how calm I am and, well, they don’t know that I am probably giving myself an ulcer with all of my worrying. Work is a distraction, for the most part, it keeps me thinking about other things. I’m not sure how I am going to do without that distraction. By talking and blogging about everything I have been able to connect online with several people who have had brain surgery. Knowing people that have been through this is beyond comforting. I know that I can make it through this.
On Saturday I had brunch with two wonderful ladies, Cate & Chrisi. It was the first time I got to see both of them in way too long. Through the first part of brunch we were chatting about hair, what’s going to happen and all of that jazz. Then, we got past the scary stuff and started creating a top 10 list of post-surgery must dos. I am still working on this list but here it goes:
(In true Letterman fashion)
- Get a pedicure; this is more of a necessity.
- Take mom to the Cherry Blossoms.
- Have a good-bye party for my living will.
- Dinner celebration with friends!
- Take my mom to Founding Farmers. Four words: Lobster Mac & Cheese.
- Figure out what it is going to take to get cleared by the FAA to fly again. (oy – not looking forward to that process)
- Take Joel to Europe. (he’s never been)
- Take at least one nap every day!
- Visit San Fran again and hop on a flight to Hawaii.
- While still bandaged, ride through the supermarket/target on a motorized scooter. Take pictures.
If you’ve been following my twitter account, you would know that on Thursday I got a PUPPY! ::squee!:: Allison sent me a get-well package and it arrived with a Corgi in it!! (and an awesome book about brain surgery) I really don’t care that it isn’t a real puppy, at least I have some form of a puppy! Allison introduced me to this fantastic blog: Obsessive Corgi Disorder. Since that fateful day a few weeks ago, I have been obsessed with Corgis. You have to admit, they are rather adorable. If you don’t believe me, check out OCD.
But, I don’t have a name for the new puppy. I can’t decide. It has to be an English name given that it is a Corgi. I already have Mr. Darcy and Scarlet so those names are out. Why should I worry about a name for a stuffed dog? Well, Corgi is going with me to Hopkins. Some days you need something to keep you strong and, since my husband passes out all the time, a puppy is just the answer. So, Corgi needs a name; a strong name. One that says, “Hey, having brain surgery is just a walk in the park!”. Any thoughts on that one?
The Last 6 Days
So I was going to attempt to write something funny about the upcoming week, but it is making me nervous. I need to find ways to stay busy and stay focused on the end result: getting better. My father and sister will be here late Friday night and my mom flies in on Sunday morning. I guess that is that. I need a funny movie now.
Oh and if you haven’t heard, I now own the only Apple DeskBook Pro on the market.
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.