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Brain

Pt 2 - How To Survive Brain Surgery

Now that I am almost 3 years post-surgery I have a few updates to this post.

Keeping My Hair Short

I really want to say that I've been keeping my hair short because of the style and because I like it. Both are mostly true. But, a big part of me has kept it short because of being scared something else will happen. I think it is a way for me to be prepared & something that I can control. Three months ago, I made the decision to actually start growing my hair out again. It has been a process and now I constantly feel a little "shaggy" after nearly 3 years with 3 inch hair.

Ignore what anyone else says and grow your hair back when you are ready. It's just hair. If it makes you feel better keeping it short, do it! If you wish your hair was back to what it was prior, find a great stylist and talk about extensions. The goal is to do a little something that helps you recover. Only YOU will know what that is.

Invest In A Heating Pad

I still live by my heating pad. On the days the headaches are bad or my body just aches I reach for the heating pad before meds every time. We have an older version of this one & I love it! I really should keep one at my office for the days I have body pain but I haven't done that yet.

Get Your Eyes Checked

My Neurosurgeon & Neurologist didn't mention this to me but my mom who is a former nurse did. It's important to stay on top of your eye exams after surgery. Your field of vision can change and it is important to get this checked. I get my eyes checked more often now than I ever have. Without my vision I would have a lot of difficulty making soap!

Great Doctors

Finding a Doctor who is willing to listen takes a lot of time and effort on your part. Call, research, interview, and do whatever it takes until you find your match. I've gone through more doctors than I can count but I finally found a PCP that listens, emails with me, and will take her time to help me find the right specialists when I need them. To me, it is worth every extra penny that I spend. She is able to connect me to doctors that are like her and will help me stay at my peak.

I am lucky because we have great company-provided insurance. I know everyone is in different situations so find the best person that you can afford, is on your plan, and that you feel comfortable with. Sometimes that means driving for a bit ex: my PCP is in DC when we live 60 miles away.

Day 365

In 365 days I went from this:

The "we're getting discharged" look:

To this:

From sitting in a hospital bed a few days after brain surgery to finishing a half-marathon at Disney World, 342 days after brain surgery.

I'll take it.

This year has taught me a lot. I say "no" more often. I am learning how to balance my time & energy. I see things differently. I feel like I've pushed myself in a lot of different directions; trying to figure out what it is that I want. Most of the time people think I'm nuts, but it helps me recover. Pushing myself to run wasn't easy, my doctors really didn't like my plan to go from nothing to 13.1 miles - at all. My body was, and is, still recovering physically. But running helps me mentally - never in a million years did I think that I would ever say that. Running helps me face each day and stay positive. With some prodding and promises to listen to what my body was telling me, the doctors slowly, ever so slowly, gave their consent.

Most days I wish I could ignore my brain and forget the past year even happened; but big honker makes sure I remember him - usually at the most inconvenient times. I cherish the freedom of quiet days without symptoms, and I love the days that keep me in bed with my puppy by my side -  as happy as he can be. I'm still scared of what the future may bring. No one really knows what I should expect, unless you want to rely on the 1980's study that studied 7 whole people.

I've decided I'll think of the past 365 days as a little dip in the road with several exceptional peaks. From now on, 2011-2012 is going to be about: My mom's two week visit to DC, I got a new MacBook Pro (RIP DeskBook Pro), Started Old Town Suds, I finished a half-marathon and I got a REAL LIFE PUPPY. So thank you to the last 365 days for proving to be kinda awesome.

How To Survive Brain Surgery: All The Non-Medical Questions You Wanted To Ask

I've started noticing a lot of people are finding my blog through brain surgery & Chiari searches. This post for those people who are about to go through brain surgery and a reviews of products I found helpful as I recovered from my decompression surgery. If there is a question you have that I haven't answered about life before/after my surgery, ask it in the comments and I will try to answer it as best as I can. Please keep in mind that I am not a doctor (blood scares me) and my answers are based on my experience with surgery for Chiari - your experience will be different.

Do you have to shave your head for brain surgery?

It depends. For me, and my particular surgery, they shaved the back of my head. Before I knew I was going to have surgery, my hair was shoulder length, full-bodied (hello, frizz), and a curly mop. My surgeon told me, that if I left my hair how it was, the top layer would cover all the post-surgery dressings and the scar wouldn't be noticeable. Being who I am, I took this as an opportunity to chop about 12+ inches off. Post surgery, when I couldn't wash my hair on my own, my "let's go as short as possible" cutting spree paid off. It was SO much easier to care for the surgical area without having my life-of-its-own hair in the way. Several times my mother told me cutting my hair was the best thing I could have done.

Although my surgery didn't require me to cut my hair, I would highly recommend it. I cut my locks off the week before surgery so I would have sometime to figure out how to style it later. When people at worked asked what spurred the change, it was a way to transition into "oh, I'm having brain surgery next week" which isn't an easy thing to share with people. More on breaking the news to people later.

The Hospital- What do you pack for the stay?

I packed a hospital bag. It had everything I thought I could possibly need while in the hospital for 3 to 7 days. We never touched it. The only thing I needed was a set of clothes to put on for the worst car ride of my life (more on that below). Everything else, I asked the nurses for. At one point, I even asked for undergarments because I didn't want to get anything nasty on my personal belongings. Plus, I wasn't allowed to have any personal possessions, besides Bertie, with my while I was in the Neuro ICU.

Should I have anything special at home for after surgery?

Every person is different; each day I found I needed something different. The first day, it was a heating pad. The second, I needed ear plugs because I was extremely sensitive to sounds. By the third, I was just starting to feel like a person again and I wanted to start moving more. I would have pillowcases and towels you don't mind getting stained on hand. I don't think any explanation is needed there...

For that worst car ride that you will take you home, pack as many pillows as possible into the car. Something I have found useful, even this far post-surgery, are special Chiari pillows. One is meant to help you directly after surgery; aptly called the "Pain in the Neck". The other is for normal days. I use both pillows daily. The Pain in the Neck is great to have when you need additional support when sitting up; think of it as a giant well-made travel pillow. My mother purchased them for me in August and I recommend them to anyone who is having brain surgery. I take my "pain in the neck" pillow with me every time I fly. It annoys whomever is sitting next to me but I am comfortable and I don't worry about rough landings because I have extra padding. The reassurance is worth the price-tag.

What is a great get well package/gift I could send to someone who is having surgery?

I think this really depends on the person having surgery. Food is always helpful. Consider placing orders at local delivery places to have dinner delivered at a set time. Don't send anything to the hospital. It will probably get lost in the shuffle and there are lots of restrictions on what is allowed. Cards are great. Opening them gave me something to do when I couldn't just sit there and watch any more tv. If you are going to send a game, toy and/or something that requires any kind of movement; keep in mind that post-surgery movement is very limited. Standing up on my own was a huge accomplishment; so was walking to the front desk of our complex. If my mom hadn't been staying with us, someone to run errands or to sit with me while Joel went out, would have been extremely helpful. After my mom left and Joel went back to work, having someone around during the day would have been a great gift. I got rather bored being at home with limited mobility.

How Do you tell people you're having surgery?

I only had 3 weeks between finding out I needed surgery and upgrade day. I told my supervisors first and they already knew that surgery was a probable option. From there, I hunted down HR so I could file the proper paperwork under FMLA, disability and so on.

At this point, only my main family members and key coworkers knew and I hadn't put anything on twitter or facebook. I put together a list of people that I needed to tell before posting anything anywhere and started telling who I could in-person. The standard "I'm going to be out of the office for an extended period of time for medical reasons" led most people to assume that I was pregnant. Lesson learned there.

The main lesson I learned was tell people what you are comfortable with. You have different types of relationships and not all relationships require an explanation. With some people, I just wasn't comfortable explaining my absence - and they didn't need the details. With others, I was upfront and they saw the fear. The words I picked depended solely on my comfort level. I used my blog and twitter as a release for some details I had trouble verbalizing.

Can I see the scar?

I think my scar is kinda nifty, so I don't mind showing people. But please don't touch my head. The surgery removed the back portion of my skull and I am, now, extremely protective of that area. I let people who need to touch my head (e.g. hair stylist, doctors, acupuncturist) know, before they touch me, that the back of my head is going to feel different so they don't freak out.

Diary of a Wimpy Big Kid: Acupuncture Edition

I hate needles. Hate them. I intentionally avoid getting shots. Every time I have to get blood work done for my doctors, someone else has to take me because I hyperventilate. If you are sticking me for an IV? I hope you have had your happy pill for the day because I will be your worst nightmare. So, I got the bright idea to try acupuncture. Yes, I volunteered to be stuck with needles - over my entire body. The great thing about my brain surgery is that it prevented my Chiari from worsening. The bad thing is that I am still in pain most days. Having the hard head that I do, I usually refuse to take pain medication - which doesn't lead to being a happy person. I began researching different ways to help calm the pain without medication and many, many people recommended acupuncture. My want to not take pills outweighed my fear of needles - I made my first appointment.

Four weeks ago, I went for my first session with Katie in the Del Ray neighborhood of Alexandria. She has studied with many successful Eastern medicine and acupuncture specialists, is younger than most of my doctors and, the best part, she has treated someone with Chiari. We had a little interview before any needles were brought into the room. After we both felt comfortable, I laid face down on a massage table (I never physically saw a needle in the 1.5 hours I was there which was fantastic). I was scared to death for the first needle. I thought it would feel like a shot but it actually just felt like a pin prick! It was fantastic! Some spots where she put needles did hurt slightly more than others and with one I had an immediate (positive) reaction. I have learned that there is a spot on the top of my head that causes my sinuses to immediately drain. The draining feature isn't the most pleasant experience, but for someone who wasn't 100% sure that acupuncture would work, it affirmed that there is something to this.

The true test of the experience happened the Friday and Saturday after my first appointment. Typically, when weather systems (especially cold fronts) move into the area I usually have an immense amount of pressure and pain. With snow in the forecast for DC on Saturday, I thought I would start to have troubles on Friday - but nothing happened. Saturday as the front was moving through - I just complained about seeing snow (I hate the bad 4 letter s word) and didn't mention pain. This was the first front that hasn't caused me pain issues in over a year! There is the chance that this could just be a fluke, but I want to remain positive. If I could have this type of positive experience after one treatment, what is going to happen after the second, third, fourth and so on?

My second appointment was two weeks ago and the week that followed wasn't as successful as the first. Katie told me not to expect such shining results each week. I was in pain but I think it was "nicer pain" than what I normally experience. My third session was a week ago and I am feeling rather pain-free! I've had one bad day, but I'll take 1 over 7. I do have a nice bruise on my hand from one point that was heavily stimulated with a needle; so far, that has been the only negative side effect. My fourth session was yesterday and was different though because I was face-up on the table. This was the first time I had the opportunity to actually see the needles while they were in me. I've never clinched my eyes more. I made one mistake though: I had an itch on my nose and went to scratch it - with the arm that had needles in it. My reaction wasn't as bad as I expected; I didn't faint!

I said in the beginning I would give acupuncture 4 weeks and I think I am hooked. Pain wise, the treatments are helping. I'll find out on Thursday if they are helping balance everything internally. I have my 9 month post-surgery scan then and I am hoping for positive results.

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..."

90 Days Later...

Pinky & The Big Brain Needs Your Support

3 months ago my life changed, hopefully, for the better. It is too soon to tell at this point. If I thought my life had hills and valleys before having brain surgery, I'm climbing Mt. Everest every other day now. Each and every day brings new challenges, and just like the weather on Everest, the challenges can change from minute to minute. I don't have a Sherpa to guide me either, sadly. A Sherpa would be nice, especially if s/he could score me a seat on metro.

Impatience is something I have needed treatment for, for a long while. I still have difficulty understanding why I still can't do somethings. Since my fateful 1 mile bike ride, I haven't really gotten on my bike again. It is difficult knowing that my days of riding as far as I wanted are most likely not going to return until I am in my third decade of life. Yes, I know I am only three months post surgery, but it is hard to accept that things are different. I assume it is similar to a stroke patient who, for example, used to be able to tie their shoelaces without thinking about it; who now has to have someone teach them this skill again. I am not saying I am exactly like a stroke patient, just that life is still more difficult than I expected; it is hard to accept at times. It doesn't help that "recovery" hasn't been the night and day difference that I expected. Recovery from the surgery is, medically, still going extremely well. It is learning to live and accept the malformation for what it is; that is my true Everest. All of this leads up to, my surgery was a treatment for my Chiari Malformation. It wasn't a solution or an all-in-one magic drug that fixes my rather large brain - not that I really want my brain to shrink, that just sounds like an all around bad idea.

I am raising funds to help find additional treatments for Chiari Malformations. If you could support my team Pinky and the Big Brain, I'd really appreciate it.

If you can support my team, it would mean a lot to me. We are trying to raise $1,000 to help find something more than a treatment for Chiari. The walk also happens to be two days before my birthday so donating would make an awesome birthday present.

Pinky & The Big Brain

I haven't written a lot about why I had to have my surgery. Part of that was because it is kinda hard to explain. Only 300,000 people in the entire United States have what I have. To put that into context there were over 207,000 new case of breast cancer in the United States in 2010, 400,000 people in the US have MS and they estimate 200 new cases are diagnosed each week, 1.5 Million Americans have some form of Lupus, so that puts my Chiari I Malformation (pronounced kee-AHR-ee) into perspective. It isn't a "sexy" malformation. It isn't visible when you look at me (other than my surgery scar). There are neat visuals and many sites that explain the malformation. The NIH defines Chiari as:

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. There are three primary types of CM. The most common is Type I, which may not cause symptoms and is often found by accident during an examination for another condition. Type II (also called Arnold-Chiari malformation) is usually accompanied by a myelomeningocele-a form of spina bifida that occurs when the spinal canal and backbone do not close before birth, causing the spinal cord to protrude through an opening in the back. This can cause partial or complete paralysis below the spinal opening. Type III is the most serious form of CM, and causes severe neurological defects. Other conditions sometimes associated with CM include hydrocephalus, syringomyelia, and spinal curvature.

Basically, that means that my brain outgrew my skull - but only the lower part of my brain. So, that is what I had surgery to treat, not cure. My surgery was difficult, to say the least. But, the sad part is, it doesn't cure anything; it just tries to make things better. I have good days and bad and more good than bad thanks to the giant window in my skull. I can't predict when days are going to be pleasant or when I am going to need to leave work early because I can't take the pain - it just happens. Everyday post-surgery I am suppose to be getting better and closer to a "normal" life, but there is no guarantee. There is no telling if I am going to have to have more surgeries or if my conditions will get worse or if one day, things will really be normal. That is why, I decided to look for others who have the same condition I do. I found something interesting.

In September, there is a walk to raise money for Chiari research and I am participating. My team is Pinky and The Big Brain. I would love it if you could help me reach my fundraising goal of $1,000 and, if you are in the area, join my team! You can donate and join Pinky and The Big Brain here. The walk is in Leesburg, VA and I am aiming for the full 2.5 miles! For those of you not in the DC area, there are many sites around the US to walk for Chiari. I hope you can join us out at Leesburg or at another site.

Dear Brain: Don't Let Me Down

On Thursday, I have my final appointment with my neurosurgeon. I.am.nervous. I have to ask him for permission for something and I don't know what the answer is going to be. First, a little back ground. In February 2010, I was appointed by the Alexandria City Council to sit on the Alexandria-Caen, France Sister City Committee. The committee finds different ways to explore French culture, bring new ideas back to Alexandria that would help citizens and to host delegations that visit from France. This fall, the committee needs several members travel to France in September - over my birthday. Leaving out the part that it is over my birthday and I could be celebrating the near end of a decade in Paris, I would be able to explore Caen and look for ways that our cities could work together even more. Oh, how I miss Europe.

But...

Everything hangs on Dr W signing off on an eight hour flight each way across the pond. I do have a back-up plan! If eight hours is too long to be at that altitude in a pressurized flying capsule, Iceland is a four hour flight from DC. I can schedule an appropriate layover. (I hope he'll go for that backup plan if it is necessary.)

So Brain, I am asking you to be in a good enough condition that Dr W gives me the go-ahead for September. By the week of the flight you will be hours away from six months post surgery. And Brain, you haven't been to Western Europe in way too long. Remember that last trip you took in 2003? Yeah, I don't either. Brain, promise me you will put on a good show and impress Dr W. Think about the joy you would bring to Joel too! He gets to go with me and he's NEVER been to Europe; but he can't go unless I am cleared to travel. My wonderfully large Brain, you know you can do this. Make it work.

7 Weeks Later

The updates have been lacking for many reasons in April. The first is how many times can you post that you are getting better? Plus, there are ups and downs of recovery that are sometimes hard to talk about. Please forgive me :-)

My Last Day at Home

Friday was my last full day at home. On Monday, I returned to work armed with my slip from my surgeon. This is the second time in my life I have used a permission slip at work. In case you are wondering, the first said I was having brain surgery. I had no clue how my body was going to respond to this. It is a big change from hanging around the apartment most of the day. I've been working on making sure my strength is where it should be and I have the stamina to work a full day. For the most part, I have returned to all of my volunteer activities to help with the transition. My only concern about all of this has been the deadly metro ride that I take into and out of the city each day. There is more on that necessary evil below. My body is handling the walking, carrying light things and most activities pretty well! I've graduated to picking up our 15 pound turkey (otherwise known as Scarlet) too.

Oh, Metro - I Still Hate You

Metro, Metro, Metro. I did NOT miss you in the almost two months I didn't have to set foot in your stations. Saturday, April 30th I decided to give it a go again and the first trip up to U street wasn't too terrible - other than your employees yelling at me because you didn't announce the train was going out of service.  My second trip, back from U street, just hurt. The jerky nature of bad drivers made my neck and titanium mess just feel absolutely horrid.  Thank goodness I had my iPhone games to concentrate on so I didn't focus on the pain.

Commuting in has been interesting. It takes me about 40 minutes on metro before we reach our stop - it should take 20 but that is metro for you. By the time I reach the office, the ride has exhausted me. I have started treating myself to some coffee to help feel a little more normal and to get my energy levels back up before work begins. If it weren't for metro, I think I would be fine returning to work full-time. I am hoping I don't have to give into driving into the city during the summer but it is starting to look like I may have to.

Hitting the Road Running

On my one month post surgery date, I just didn't feel like I could stand running or really doing much of anything, so I gave myself a few more days to get back to running and exercising. Running still feels like it will hurt, especially with how much it can hurt to take metro. But, I have gotten back on the elliptical and able to do a decent amount of time on it! I'm walking everywhere I can. I even put in over 5 miles walking around DC and Alexandria on Saturday. I would love to be able to run a 5K by the end of summer but I think I need to aim for a later date; especially with my body getting used to getting back to work. Maybe I'll aim for a Turkey Trot or something else at the start of the holiday season? At least then I would have an excuse to eat all the mashed potatoes I want!

Nerd Prom

For those of you who don't know what nerd prom is, it is one of the days that everyone in DC looks forward to each year. It is actually called The White House Correspondents' Association Dinner. What I love about the dinner is the humorous spin that is put on current events. For instance, I am assuming most of you have seen the movie The King's Speech, well, President Obama made a joke about how a sequel is being made - The President's Speech. Here is the trailer:

Yes, I love politics, but isn't that just hysterical!?! The trailer kinda makes me wish that actually was a movie - it would be rather entertaining.

That is a recap of what has happened over the last month. I am hoping to return to non-brain surgery posts as I start getting back to my "normal" routine. I can't believe it is May already. I feel like it should still be March and my mother should still be here taking care of everything. Here is to a great May!

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.

It's Been One Week, 7 days, 168 Hours

"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.