I had my follow-up MRI yesterday. Total wreck of nerves all day. My sister went with me to be my backup driver in case I was woozy from the contrast (I wasn't) and was a total sport when I said that we needed to leave my office at 4:30pm. My appointment was at 6:30pm and I had to be in the waiting room by 5:45pm. But here's my rationale for why it could take over an hour to drive up the street:
The hospital is only 1.15 miles away from my office, but it's up Wisconsin Ave on the edge of rush hour. If you know DC traffic, especially Georgetown traffic, you know that it can take 30 minutes to drive those 7 blocks before you turn down Reservoir.
And then we know that the later in the day it is, the more difficult parking can be - the garages are quite small. But we lucked out - we did have to go to another garage, but there was a spot right near the entrance.
And then I had to get to the CCC Building, which is, like, waaaaaay in the back of the hospital complex. One starts singing "over the river and through the woods" going down hallway after hallway. But then since Alison has gone in and out of the hospital so many times, she knew exactly where to go.
So, yeah, we were all checked in by 5pm. And then they didn't call me back until 6:45pm. And then we had to go to the other MRI location (over the river and through the woods again). And then wait for them to be really ready for me. And then the MRI took 45 minutes (standard length of time). And then I had to wait another 5-10 minutes for the tech to make a CD of my images. It was 8pm by the time we go out of the hospital. My sister didn't complain once. At least not to me.
Plus, we got to see the images of my brain over dinner! And seeing my gray matter all gray, no glowing white mass, was worth the 3 hour wait. Though next time I'll budget our time better :)
Pictures are after the jump. For each set, the top picture is from my November MRI and the second picture is from yesterday. I tried to get as close to the same view as possible. Look for my titanium pins and the choppiness of my skull and faux-derma. It's pretty cool.
To my untrained eye, it certainly looks like nothing is there. I am meeting with my neursurgeon on the 9th for his trained-eye opinion and I'll update again after that!
Thursday, March 29, 2012
Wednesday, March 21, 2012
what to take to the hospital - clothing
Number one rule for hospital clothing is comfort. Don't bring anything that's too small, itchy or that doesn't stretch. Bring stuff in colors that make you happy, that are comforting. If you buy a brand new pair of pajamas, bring some old pants that you KNOW are cozy in case the new ones end up sucking. Yeah, I speak from experience. My bright, happy red flannel pajamas made me feel fan-freaking-tastic until I tried to adjust myself in bed. Then their non-stretchiness made them get all bunched up underneath me. And don't get me started about trying to deal with having my blood pressure and blood taken in the middle of the night. I ended up swapping them for some worn-out gray lounge pants and a black hoodie that were a lot easier to deal with. Luckily I also had a bright green shawl so while I was in drab colors, I could drape myself with prettiness.
Because rule number two? Don't bring anything ugly. You want ugly, just continue wearing the hospital gown. Bring colors that make you happy, that are comforting. And, okay, if your stretched-out, faded beige sweatshirt makes you ridiculously happy, bring it. But color is incredibly therapeutic so take advantage. If you don't have pretty colors, bring an afghan or blanket. I also had a body pillow with a brightly printed case that my sister loaned me. I never really used it as a pillow, but its cheerfulness kept me company in the otherwise sea of hospital white.
I also highly recommend layers. Here's my dream hospital outfit:
* lounge pants
* ribbed tank
* wide-necked short-sleeved t-shirt
* hooded sweatshirt
* pashmina/large scarf/shawl
I didn't have the t-shirt so when I was hot, I had to be in just the tank top, which didn't really jive with how I was feeling. A short-sleeved t-shirt would have made life a lot easier when they needed to check my blood pressure, take blood or give me a shot in my upper arm. And with a wide neck, it would have been easy to get over my head even when I was still ginger about it. But then the tank would provide modesty since it's more form-fitting and won't slip down, plus sometimes I got so freaking hot in that room, even when the air was turned all the way down.
The shawl is important for when you're still hooked up to the machines and wearing the hospital gowns. You won't be able to take on and off a sweatshirt or jacket and even pulling the sheets up to your chin could be difficult or pull on your IV lines. But a shawl you can drape however works best - and the jolt of color helps take away from the blahness of the hospital gowns.
And then, of course, I would have a variety of colors in each of these items so I could mix and match at will. Old Navy, Target, Lands End and LL Bean are my favorite places to buy lounge-y type items, but definitely not the end of the list.
Final note - undergarments. I was a little surprised at myself for wanting to wear a bra all day long, but I did. It helped me feel pulled together and - again - more like myself. I think it was because the underwire helped counteract the schlumpiness of being in a hospital bed anyway. That slight uncomfortableness reminded me of my non-hospital life. Plus I didn't often have much notice when I had visitors and it was nice to always be ready.
Because rule number two? Don't bring anything ugly. You want ugly, just continue wearing the hospital gown. Bring colors that make you happy, that are comforting. And, okay, if your stretched-out, faded beige sweatshirt makes you ridiculously happy, bring it. But color is incredibly therapeutic so take advantage. If you don't have pretty colors, bring an afghan or blanket. I also had a body pillow with a brightly printed case that my sister loaned me. I never really used it as a pillow, but its cheerfulness kept me company in the otherwise sea of hospital white.
I also highly recommend layers. Here's my dream hospital outfit:
* lounge pants
* ribbed tank
* wide-necked short-sleeved t-shirt
* hooded sweatshirt
* pashmina/large scarf/shawl
I didn't have the t-shirt so when I was hot, I had to be in just the tank top, which didn't really jive with how I was feeling. A short-sleeved t-shirt would have made life a lot easier when they needed to check my blood pressure, take blood or give me a shot in my upper arm. And with a wide neck, it would have been easy to get over my head even when I was still ginger about it. But then the tank would provide modesty since it's more form-fitting and won't slip down, plus sometimes I got so freaking hot in that room, even when the air was turned all the way down.
The shawl is important for when you're still hooked up to the machines and wearing the hospital gowns. You won't be able to take on and off a sweatshirt or jacket and even pulling the sheets up to your chin could be difficult or pull on your IV lines. But a shawl you can drape however works best - and the jolt of color helps take away from the blahness of the hospital gowns.
And then, of course, I would have a variety of colors in each of these items so I could mix and match at will. Old Navy, Target, Lands End and LL Bean are my favorite places to buy lounge-y type items, but definitely not the end of the list.
Final note - undergarments. I was a little surprised at myself for wanting to wear a bra all day long, but I did. It helped me feel pulled together and - again - more like myself. I think it was because the underwire helped counteract the schlumpiness of being in a hospital bed anyway. That slight uncomfortableness reminded me of my non-hospital life. Plus I didn't often have much notice when I had visitors and it was nice to always be ready.
Tuesday, March 20, 2012
what to take to the hospital - toiletries
Waking up from surgery, I felt absolutely disgusting. I had all sorts of weird goo on my face and in my hair and my mouth felt like something had died inside of it. My nurse brought me a wet washcloth and some lip balm and it was AMAZING. Seriously - wiping my face was one of the best feelings I've ever experienced. Think I also used the cloth to scrub some of the scum off my teeth. And then my lips were so dry and chapped from the breathing tube and those ice chips did nothing to help.
But I didn't know that I would want my toiletries immediately after surgery. And who knows - you might be different. But just in case, have your family bring them up to ICU when they visit for the first time. If you're following my advice, it should all be in your makeup/Dopp bag. The bag will also will be great because you'll be hooked up to machines and a catheter and not able to get out of bed or even reach all that far.
For that first night, you should have:
* extra-moisturizing lip balm
* Kleenex (the stuff they give you at the hospital is like sandpaper)
* Brush-Ups or other teeth-cleansing wipe sort of thing since it's hard to actually brush your teeth when strapped to the bed & on limited water
* facial cleansing cloths
* face moisturizer
* mouthguard if you use one
Once you're able to get out of bed, you'll want even more stuff:
* face wash
* toothbrush, toothpaste, mouth wash, dental floss
* fine-toothed comb (to get the gunk out of your hair)
* shampoo (for when you're able to shower)
* head scarf/bandana
* barrettes or bobby pins (until you can shower, your hair will be gross, even if you get someone to pick out the goo and even after using the no-rinse shampoo stuff the hospital may give you, and you'll want it off your face)
It's not a ton of stuff, but man, it's a total game-changer. I finally started to feel like myself again once I was able to wash my face and brush my teeth with the products I use at home. I smelled like myself again, you know?
And don't forget your cell phone and charger! Even if you're not sure that you'll be up for using your phone, bring it just in case.
But I didn't know that I would want my toiletries immediately after surgery. And who knows - you might be different. But just in case, have your family bring them up to ICU when they visit for the first time. If you're following my advice, it should all be in your makeup/Dopp bag. The bag will also will be great because you'll be hooked up to machines and a catheter and not able to get out of bed or even reach all that far.
For that first night, you should have:
* extra-moisturizing lip balm
* Kleenex (the stuff they give you at the hospital is like sandpaper)
* Brush-Ups or other teeth-cleansing wipe sort of thing since it's hard to actually brush your teeth when strapped to the bed & on limited water
* facial cleansing cloths
* face moisturizer
* mouthguard if you use one
Once you're able to get out of bed, you'll want even more stuff:
* face wash
* toothbrush, toothpaste, mouth wash, dental floss
* fine-toothed comb (to get the gunk out of your hair)
* shampoo (for when you're able to shower)
* head scarf/bandana
* barrettes or bobby pins (until you can shower, your hair will be gross, even if you get someone to pick out the goo and even after using the no-rinse shampoo stuff the hospital may give you, and you'll want it off your face)
It's not a ton of stuff, but man, it's a total game-changer. I finally started to feel like myself again once I was able to wash my face and brush my teeth with the products I use at home. I smelled like myself again, you know?
And don't forget your cell phone and charger! Even if you're not sure that you'll be up for using your phone, bring it just in case.
Monday, March 19, 2012
what to take to the hospital - bags
1st in a series about what to take to the hospital and I figured I'd start with how you get the stuff there.
I recommend having a couple of bags. I used tote bags from LL Bean - they're nice and sturdy and can hold a lot of stuff - but any sort of bag can work. Just either have ones bigger than you initially need or bring an empty one because you'll probably leave with more stuff than you came with.
Initially, I had two bags - one bag with toiletries & clothes and the other bag with electronics. I wasn't sure how soon I'd want my laptop or iPod so figured I'd have my family keep that one in the car. Turns out I never wanted my laptop and wanted my iPod immediately, but the real reason I liked having two bags is so I could sort stuff. My family came to visit every day (thank you thank you thank you!) and almost every time I asked them to bring a few new items but never remembered to send them home with stuff. So I ended up with things I didn't need or want anymore. All of that went into one of the bags, which remained on the floor. Then I didn't need to sift through the dirty pajamas or the scarf that didn't really cover my head or the unwanted laptop or the pajama top that ended up being uncomfortable. It helped me keep my room organized and me sane. I was ALL about organization.
Which brings me to my second type of bag. You also need a smallish, personal bag. If you're a woman, you call it a makeup bag.
If you're a man, you call it a Dopp kit.
This was huge for me. Bigger than the totes. My makeup bag is a plastic-lined one I got as a bridesmaid gift several years ago and it's nice and roomy and can stand up on its own. I kept a pad of paper, two pens, a small packet of Kleenex, lip balm and cell phone in there. All the little fidgety items you like to have with you at all times, but that are easily dropped (or in the case of lip balm, roll off the table). When the brought my meals, I could just shove everything into my kit and put it on my lap while they got the tray all settled. When people came to visit, I could do the same thing. And if I was all perfectly arranged in the hard-to-get-yourself-perfectly-arranged hospital bed, I barely had to move to get anything I needed. It was also key for when I sat in the chair instead of the bed. My room was very small and so moving the tray over to the recliner was a hassle. But I didn't need it because of my lovely pouch!
If you don't have a large makeup bag, I highly recommend getting one. Not only is it useful for your hospital visit, but they're also great for travel. Etsy has some really cute ones, but you can also find them at all sorts of places like ebags.com, Target and CVS.
I recommend having a couple of bags. I used tote bags from LL Bean - they're nice and sturdy and can hold a lot of stuff - but any sort of bag can work. Just either have ones bigger than you initially need or bring an empty one because you'll probably leave with more stuff than you came with.
Initially, I had two bags - one bag with toiletries & clothes and the other bag with electronics. I wasn't sure how soon I'd want my laptop or iPod so figured I'd have my family keep that one in the car. Turns out I never wanted my laptop and wanted my iPod immediately, but the real reason I liked having two bags is so I could sort stuff. My family came to visit every day (thank you thank you thank you!) and almost every time I asked them to bring a few new items but never remembered to send them home with stuff. So I ended up with things I didn't need or want anymore. All of that went into one of the bags, which remained on the floor. Then I didn't need to sift through the dirty pajamas or the scarf that didn't really cover my head or the unwanted laptop or the pajama top that ended up being uncomfortable. It helped me keep my room organized and me sane. I was ALL about organization.
Which brings me to my second type of bag. You also need a smallish, personal bag. If you're a woman, you call it a makeup bag.
If you're a man, you call it a Dopp kit.
This was huge for me. Bigger than the totes. My makeup bag is a plastic-lined one I got as a bridesmaid gift several years ago and it's nice and roomy and can stand up on its own. I kept a pad of paper, two pens, a small packet of Kleenex, lip balm and cell phone in there. All the little fidgety items you like to have with you at all times, but that are easily dropped (or in the case of lip balm, roll off the table). When the brought my meals, I could just shove everything into my kit and put it on my lap while they got the tray all settled. When people came to visit, I could do the same thing. And if I was all perfectly arranged in the hard-to-get-yourself-perfectly-arranged hospital bed, I barely had to move to get anything I needed. It was also key for when I sat in the chair instead of the bed. My room was very small and so moving the tray over to the recliner was a hassle. But I didn't need it because of my lovely pouch!
If you don't have a large makeup bag, I highly recommend getting one. Not only is it useful for your hospital visit, but they're also great for travel. Etsy has some really cute ones, but you can also find them at all sorts of places like ebags.com, Target and CVS.
Friday, March 16, 2012
2 months post-surgery update
So Monday will be the two month anniversary of my surgery. How am I doing?
I went back to work on 2/27. The first week and a half I was doing half or 3/4 days, but by the end of that second week, I was doing full days with mentally taxing projects with no problem. Well, I was extra cranky, but I made it through.
Walking is no problem at all, even in heels. Stairs don't give me pause. My ankles seem quite secure. I had three physical therapy appointments and the third was just the therapist testing me to prove that I didn't need the scheduled fourth. Doing the exercises definitely helps, but I think my body is also just recharging on its own.
Because I don't have any of these big problems, I can now notice the small problems. The ones that don't matter to the big picture. Like I can't bounce my right leg as quickly as my left. Try it. I asked at mah jongg - everyone else could bounce their legs at the same speed. But I can only do it slowly with my right leg. It's a nice, steady pace so it's not like I can't bounce at all. And the other night I was able to get it going for a few seconds, but couldn't repeat it. So I've been bouncing my leg almost nonstop to get it to remember how to do it. And maybe when that gets back to normal I'll be able to easily skip again. Again - ha! Not like I was prone to skipping again. But a girl can change!
My legs also seem to be back to having similar sensations. Oh yeah - haven't really talked about that. It's not something I notice all the time, really just when I'm in the shower or getting a pedicure (I've had three in the past two months! Totally baller) so by the time I'm somewhere where I would tell someone, I've forgotten about it. In the hospital, they would poke at my legs and ask if it felt the same on both, and it did. This is more of a tingling sensation only in my right leg. And when getting my many, many pedis, my right foot was MUCH more ticklish. But last night I got a pedicure and my feet were equally ridiculously ticklish and no extra tingles going on. So that's good.
My hair is growing back and I'm taking extra vitamins to encourage hair growth. Not 100% sure that they're helping - I've always had long hair so don't really know how fast my hair grows when it's short anyway - but they are making my fingernails grow like crazy so I imagine they're doing the same thing on my head. The scabbing is 99% gone and the hair over where the majority of the scabs were is still pretty short (and of course that's the part that's the most visible to the casual observer). So I'm still wearing a scarf every day to cover it up. But I've bought a few more scarves and borrowed even more (thanks Carey and Alison!), which helps make it not such a drudge.
Mentally, I'm back to normal. Other than the whole hair issue, I can easily forget that I even had a tumor and subsequent surgery, which is why this blog has been so empty. My mom gets frustrated because I'm not giving regular updates, but there isn't a lot to update. Life is good and back to normal and Normal Debbie didn't give regular updates on her status, you know? It was this whole flurry of activity, but now I'm back to a normal pace of life. And that is such a good thing. I have been thinking about my ex-tumor more this week than before, but that's probably because of the upcoming anniversary. I do tend to forget that I'm remembering an anniversary of something unhappy until it's on top of me or even until it's past. And then I'm like ohhhhhhhhh, THAT's why I've been so weird!
And as I stated above, I'm back to playing mah jongg. And I'm back to kicking ass at it. The first few hands of the first game, the card was a bit blurry (it's a lot of tiny numbers in blur-inducing bright colors), but then everything cleared up and I was back to being able to think through my hand and to guess what hands everyone else is playing. Love this game, love that I can do it again.
I'm also able to tackle big, complicated budgets at work. I'm all about Excel and my budgets often include multiple projects on multiple tabs, linking cells, high and low ranges. Just a lot of details. And I very successfully did one of these monsters last week. Maybe it tired me out more than normal, but if so, not by much. They're energy-sucks anyway.
The next two weeks are big ones for me. My first real concert on Monday (I saw a local band at the cafe in town a few weeks ago, but that was more of a gathering than a full-on show) and then my follow-up MRI on the 28th. I'm super excited for the MRI because I KNOW it's going to be clear and I can't wait to have the confirmation. And I'm also interested to see how my body reacts when it's not being attacked by a tumor and vicious headaches. My sister is meeting up with me so she can drive home, just in case.
And I'm also planning several trips for this summer, one of which involves flying. That'll be fun - to see if these titanium pins really won't set off the airport scanner. Supposedly they're too small to do so, but, you know, it'll be good to test it out.
I went back to work on 2/27. The first week and a half I was doing half or 3/4 days, but by the end of that second week, I was doing full days with mentally taxing projects with no problem. Well, I was extra cranky, but I made it through.
Walking is no problem at all, even in heels. Stairs don't give me pause. My ankles seem quite secure. I had three physical therapy appointments and the third was just the therapist testing me to prove that I didn't need the scheduled fourth. Doing the exercises definitely helps, but I think my body is also just recharging on its own.
Because I don't have any of these big problems, I can now notice the small problems. The ones that don't matter to the big picture. Like I can't bounce my right leg as quickly as my left. Try it. I asked at mah jongg - everyone else could bounce their legs at the same speed. But I can only do it slowly with my right leg. It's a nice, steady pace so it's not like I can't bounce at all. And the other night I was able to get it going for a few seconds, but couldn't repeat it. So I've been bouncing my leg almost nonstop to get it to remember how to do it. And maybe when that gets back to normal I'll be able to easily skip again. Again - ha! Not like I was prone to skipping again. But a girl can change!
My legs also seem to be back to having similar sensations. Oh yeah - haven't really talked about that. It's not something I notice all the time, really just when I'm in the shower or getting a pedicure (I've had three in the past two months! Totally baller) so by the time I'm somewhere where I would tell someone, I've forgotten about it. In the hospital, they would poke at my legs and ask if it felt the same on both, and it did. This is more of a tingling sensation only in my right leg. And when getting my many, many pedis, my right foot was MUCH more ticklish. But last night I got a pedicure and my feet were equally ridiculously ticklish and no extra tingles going on. So that's good.
My hair is growing back and I'm taking extra vitamins to encourage hair growth. Not 100% sure that they're helping - I've always had long hair so don't really know how fast my hair grows when it's short anyway - but they are making my fingernails grow like crazy so I imagine they're doing the same thing on my head. The scabbing is 99% gone and the hair over where the majority of the scabs were is still pretty short (and of course that's the part that's the most visible to the casual observer). So I'm still wearing a scarf every day to cover it up. But I've bought a few more scarves and borrowed even more (thanks Carey and Alison!), which helps make it not such a drudge.
Mentally, I'm back to normal. Other than the whole hair issue, I can easily forget that I even had a tumor and subsequent surgery, which is why this blog has been so empty. My mom gets frustrated because I'm not giving regular updates, but there isn't a lot to update. Life is good and back to normal and Normal Debbie didn't give regular updates on her status, you know? It was this whole flurry of activity, but now I'm back to a normal pace of life. And that is such a good thing. I have been thinking about my ex-tumor more this week than before, but that's probably because of the upcoming anniversary. I do tend to forget that I'm remembering an anniversary of something unhappy until it's on top of me or even until it's past. And then I'm like ohhhhhhhhh, THAT's why I've been so weird!
And as I stated above, I'm back to playing mah jongg. And I'm back to kicking ass at it. The first few hands of the first game, the card was a bit blurry (it's a lot of tiny numbers in blur-inducing bright colors), but then everything cleared up and I was back to being able to think through my hand and to guess what hands everyone else is playing. Love this game, love that I can do it again.
I'm also able to tackle big, complicated budgets at work. I'm all about Excel and my budgets often include multiple projects on multiple tabs, linking cells, high and low ranges. Just a lot of details. And I very successfully did one of these monsters last week. Maybe it tired me out more than normal, but if so, not by much. They're energy-sucks anyway.
The next two weeks are big ones for me. My first real concert on Monday (I saw a local band at the cafe in town a few weeks ago, but that was more of a gathering than a full-on show) and then my follow-up MRI on the 28th. I'm super excited for the MRI because I KNOW it's going to be clear and I can't wait to have the confirmation. And I'm also interested to see how my body reacts when it's not being attacked by a tumor and vicious headaches. My sister is meeting up with me so she can drive home, just in case.
And I'm also planning several trips for this summer, one of which involves flying. That'll be fun - to see if these titanium pins really won't set off the airport scanner. Supposedly they're too small to do so, but, you know, it'll be good to test it out.
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