catching up...

so, i've been home since wednesday evening and so far i have taken a handful of very good naps, eaten well, and slept pretty well at night.  i've kept my incision covered with gauze whenever wearing a hat, and the hats have been loose-fitting.  i've changed pillow cases often and tried to keep the incision clean and dry.  and that's about what the days have entailed.  dad and i went to jimnerd's for some homemade pancakes this morning, they were delicious and way fluffier than any i've ever been able to make.  we even stopped on the way home because i was feeling up for shopping for some v-neck t-shirts and a couple of full-zip hoodies.  having the pic line makes it tough to wear long sleeves (most of mine are too tight around the arm to fit over the IV) and when i have to infuse my antibiotic it is way easier to just take off one arm of a full-zip than to do so with a regular sweater or fleece.  so, small victories.  i even did some cooking tonight, making some chicken soup base out of the roaster we had for dinner.  that's not to say i am counting the minutes until 10pm so i can give myself the ancef and get the heck to sleep.

so, a few tidbits from the adventures of the past six weeks...

i am catching up on my meditations and the other night i read these two.  here's the entry for january 18 (the day i was diagnosed with the tumor) in my book of daily meditations by the Dalai Lama:

"To develop patience, you need someone who willfully hurts you.  Such people give us real opportunities to practice patience.  They test our inner strength in a way even our guru cannot.  Basically, patience protects us from being discouraged."

and from february 23, (the day i was in the er with an infected incision):

"When you have fear you can think:  'Others have fear similar to this; may I take to myself all of their fears.'  Even though you are opening yourself up to greater suffering, taking greater hardship on yourself, your fear lessens."

I thought both were rather poignant when I reflected upon what each of those days held for me.  Little did I know just how great a test of my patience this part of the adventure would require, much more than ever before, from both myself and those around me.  I've managed much better in recent days, reminding myself to live in only the present and taking everything just one day at a time.  I can't let myself become bogged down in the what-if's of the coming months.

And fear, I've had a lot of it recently, and it is very unlike me to not be able to put it away on the shelf - I've just now begun to be able to walk away from it for most of the day.  Again, taking things in small bites helps this.  But that day, sitting on the gurney, being told my incision was infected and I'd have to have another brain surgery, and that means we'd have to stop the blood thinners, while I still very much had a clot in my neck, these things were all very scary.  But, as I sat there, I did think about all the other difficult things people I know have had to go through and I did take them on in a way; I reminded myself I could do this, and for small moments of time I believed myself. 

finally, something a little less serious...

so, last sunday morning a cadre of neurosurgery residents rolled up next to my bed and told me the surgery was going to wait until monday.  after internalizing my excitement of being able to eat all day (fat kid, skinny body, and okay, maybe i didn't internalize it) i asked them a very serious question.  would they shave my head before the surgery?  not just the strip along both sides of my incision, but the whole thing?  i hadn't had a haircut since the beginning of january and the steroids caused my hair to grow like crazy.  i had this strip down the back where the incision was that was about two inches shorter than the rest, and the rest was looking a lot like the clown hair of my youth.  this is not, and never was, a good look.  so, i asked them and perhaps gave them some puppy dog eyes, and lo and behold, the next morning in the operating room someone asked me, from behind a mask and underneath a surgical cap, if i was serious about wanting a haircut.  yes was pretty much the last thing i said before i drifted off to la la land.  i don't know which resident he was, there are a handful on my doctor's service and frankly, i was too nervous to figure it out based on eyes alone.  so, i woke up and my hair was buzzed.  i have been there before and honestly kind of liked the ease of it as long as it lasted... but i didn't give much thought to the fact i'd have my incision just out there for the world to see, this time stitches and all.  kind of like a bad frankenstein movie. 

fast-forward a couple of days, i am on one of the neuro floors and you basically can't leave it, you can only walk around the hallway for exercise.  mom and i were out for a stroll and i didn't notice this but she did - we walked past a family with little kids, waiting to be buzzed out of the doors into the real world, and the two little kids took one look at me and their eyes bulged out of their heads!  terrible.  i guess it was the combo of the crazy shin-guard like compression socks i still had wrapped around my shins over my sweatpants, and the scary-ass incision on my head... i'm sure they wanted out of there pretty fast.  i don't know how i missed it but mom and  just had a good laugh about it tonight.

and viola, it is 10:15 and i am just about finished with the IV for the night.  sweet dreams...