Monday, June 17, 2013

Progression of a Head

Before my brain tumor surgery, I really wanted to see what I was in for.  Here's a little pictorial journey of my head and neck over the weeks as I recovered from my tumor resection, just in case you're also wondering "What will I look like after brain surgery", because I know I wondered.

This is after my initial admission at Georgetown.  I had Thursday (which I spend half of at Hopkins) to Wednesday morning (when I checked in for surgery) at home.  The kids had all been sniffly, so to avoid getting sick, we took turns wearing masks and everyone used lots of hand sanitizer.  My hair was long! 

 This is Tuesday night before surgery.  I was originally going to get an incision for a drain and an upside down L incision for the craniotomy, which Dr. Nayar was going to shave off in the ER, but I wasn't about that, because 1) I wasn't losing anything that wasn't on my terms 2) caring for weird hair with blood sounded gross 3) some cute kid with cancer is now blonde with long hair.

This is in pre-op.  If you're wondering how my husband was able to stand how incredibly sexy I look in this picture, the answer is self-control.  :) The pre-op nurses are very kind and upbeat, but if you go the shaved head route, note that those little blue caps will not do much to keep your head warm, and it is COLD when you're used to having hair. 

This is Ron, one of the best nurses ever, and I still have the drain in my head, so I know I'm still in the ICU and it must be pretty early on.  Note the pink line of goop coming out the top right of my head- that's the drain.  My neck is almost the same size as my head.  Swelling is a good time :) 

 This is when the kids came to visit me for Savannah's actual birthday.  I had the drain and the catheter out (whoohoo, did I mention you get multiple drains? It's okay, you won't want to walk the first day anyway if your surgery is as extensive as mine, although I hear that my roommates who had menengiomas removed skipped out of the ICU on day 2, so if yours is more like them, you'll be peachy 24 hours later!) You'll notice I look like I am completely out of it, and I was.  I actually don't remember this day happening at all, thanks to Valium/Morphine/Whatever Else They Gave Me.  I wore a hat so I wouldn't scare the kids with the back of my head, and I apparently had a hard time moving my neck at all, so I turned my whole body.  My neck is a little smaller, though! My neck mobility was because they had to operate into C1 and C2, not because of the actual craniotomy itself.

I left the hospital after 8 days, and I want to say this is day 10 or so at home.  My neck swelling went down pretty substantially, but the actual incision looks much angrier and gathered up.  I was totally off IV pain meds by day 6 when they moved me to the stepdown (I believe) because they told me I needed to be able to hack it with oral medication if I wanted to go home.  In retrospect, I was pretty miserable at home and probably could've stayed a few more days in the hospital, but I hate admitting I need pain meds and I missed my bed, and despite having great care and nurses, I wanted to go home.
 I had my stitches out on February 20th.  I know that, because it was my birthday.  My hair is growing back, which is exciting! This is actually just a few days later, I want to say it's the 25th or so, I went back to the ER for a possible infection, which I ended up not having.  Looks pretty good considering what I went home looking like!
 This is not cute hair.  Not at all.  However, this is right before starting radiation treatments at Duke, putting me about 7 weeks out from surgery.  My hair is covering up most of my scar, and it's getting lighter!
This is the end of week 4/beginning of week 5 of radiation.  If you look at my neck you'll see my scar is very light and doing well!  My hair was back and pretty thick, too! However, I did start losing my hair in the radiation pattern, so I decided to cut it off again because having a bald spot was weirder than being bald!  I have two thin stripes missing about 2 inches above my ears on either side, and I'm not sure if they're going to grow back in, but they're only about 1/2 an inch at the widest, and my hair (now 3-4 weeks post radiation) is growing back over the top, so I don't think anyone will be able to see them.  The back is growing in again.

While the scar is healing nicely, and my hair is growing back, I will mention that is still HURTS back there.  Not on an everyday basis, mind you, but my neck gets sore after "a spell" of laying any particular way, and laying flat on plastic is painful pretty quickly still.  I realize that sounds like an odd complaint, but when you have a brain tumor, you get a lot of CT Scans and MRIs.  My last MRI (I think I complained about it already) was incredibly long, and it really does get hard to focus on anything but the pain laying on the incision on plastic or four hours.

This is me at the end of radiation.  I can move my head and neck really well, my skin is obviously less than thrilled with me, but I was doing really well!  I have another check up at Georgetown tomorrow with my neurosurgeon and my oncologist, and I'll try to get a picture of the back of my head so I can add one more view a few months out from surgery.  I think I've healed really well, and I'm happy with the progress I've made in Physical Therapy (and out- I took my worksheets home and actually did them, and they help a ton!) and I hope that seeing how fast you can actual heal is encouraging to someone else!
This is from today (June 17th), so we're one month and two days out from radiation, and 4 months and 12 days out from surgery.  I think my incision looks really really good!  My hair is kind of funny, you can see the radiation on my neck gave me some alopecia, too.  I actually didn't wear a hat today (or for a few days) because when I feel the back of my head, I feel hair in that giant bald patch! Austin pointed out to me today that I'm still super bald- he thought I was just "owning it" and rocking out the bald spot! I thought that my hair had grown back in some and that it wasn't quite so obvious! Whoops :)
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