an inconvenient root.

Before I write a post about some of the good things that have occurred this month, I'm going to "cover" a topic I've been avoiding: hair.

Last year a number of people told me that they would "just cry" if their head was shaved. Ummm I cried when I got my diagnosis. Twice. And I didn't cry when my head was shaved. Either time.

I would rather lose my hair than my life.

I was trying not to make a big deal about something so insignificant (comparatively) but... here I am. writing about hair. Last year my hair just did its thing and grew back all at once. Last year I didn't undergo radiation.


The radiation zapped most of the follicles on the right side of my head (where the beams were primarily directed since that's where the tumor was), a chunk in the back and some random hairs. There are usually a few on my pillow when I wake up. These will not START to grow back for a few months. Yeah, I said MONTHS. There's quite a bit left that will likely not fall out-including all of the top, which is growing back quite nicely (or so they tell me).


The only places I have been so far are doctors' offices and RPCI where, at any given time, there are at least 3 people walking around without any hair. It's easier there; I don't have to hide.

Let's forget about the beauty aspect of it for a second to discuss the main challenge: covering my head. I will not be able to just pull my hair back and run out of the house (not that there would be enough hair to do that anyway or that I'm medically cleared to drive...or...run).


I will need to get a WHOLE BUNCH of headwear. The biggest problem is finding some options that are professional for work that don't cover my ears (when September rolls around I need to be able to hear my first graders!) or give me a headache or make me look like one of the Olsen twins.

Option number 1: the turban. Just because it has loops on it to hold a scarf that doesn't mean it will make me look any less ridiculous. This is not speculation; this was confirmed a few weeks ago. when I ordered a turban with loops on it.


Option number 2: hats. I am a "hat person" (why do people feel the need to pigeonhole themselves in this way and say they are or are not a "hat person"?) so I thought I could use these since I have a few cute ones. The problem? Most of them cover at least one ear or cast a shadow and that drives me crazy/really distracts me. Many of them also don't cover the patch that's gone in the back and give me a headache. However, I will still keep this option open. I'm not sure if I'd be allowed to wear one anyway.


I'll go with door number 3 and have to buy scarves-a WHOLE BUNCH of scarves. I have one so far and one on the way (for those just tuning in, I'm not talking about children) but I will need to get many, many more.

I will need to plan out what clothes I have and figure out what kinds of scarves I'll need and make sure I have enough to get me through many weeks at the very least. The cost is the least annoying part of it.


We'll come back to the beauty aspect and forget for a moment how unbelievably inconvenient it will be to get head coverings for each day. It's going to be a long, long time before I'll be able to style my hair. After a whole YEAR most parts were barely to my ear. Now I don't know when or how it will grow back. I was hoping that the parts that are there will grow enough to cover the parts that fell out-but, besides the chunk missing in the back, I doubt that will not be the case.

Am I sad when I see old pictures of myself? Absolutely. but not only because of the hair.

wrongs of passage.

Since the first "abnormal" in October, every appointment has rendered results we couldn't have possibly prepared for. Then the operation was completed and the tumor resected. So we are all set, right? Wrong. Starting a week after the surgery, here are our results. in order.

1. Neurosurgeon appointment
My assumption: he'll just take out the stitches and do a general check-up

WRONG.

Reality: This tumor was a different type and a higher grade than the last one (still benign) and I might need 5 weeks of daily radiation to prevent recurrence.

2. Radiation-Oncologist appointment
My Assumption: he'll just let me know if the radiation is needed or not.

WRONG.

Reality: The radiation IS needed and there are long-term effects that may possibly resurface years down the road. It's close to the pituitary gland, which may cause thyroid problems, hormone issues, etc. "After all, it IS radiation to the brain..." For now, I should just expect nausea, fatigue, and patchy hair loss. I'll be treated daily and monitored weekly. Chemotherapy (a word that hadn't even been mentioned up until this point) may also be necessary. Time to meet with the Neuro-Oncologist.

3. Neuro-Oncologist appointment
Assumption: I have to prepare for the worst. He'll probably tell me I'll need to have chemo along with the radiation for the next 5 weeks.

RIGHT.

Omega 3's.

This week is a week of (temporary) lasts:

Last time I can sing: there's too much literal pressure
But the good thing is-Tim and my brothers will be waiting in the wings to record and to jam, respectively (clearly Tim will join in the jams; I just enjoy using the word "respectively")

Last time I can shower: for safety reasons, a "baths only" policy will be in place
But the good thing is-effervescence in my parents' whirlpool tub is not too shabby

Last time I will fear this surgery.
But the good thing is-it will all be over soon.

I pray this will be the:
Last time this tumor will grow back
Last time I go to Roswell and hear bad news
Last time I have to leave my students

Last time I will fear this surgery.

lighter note: inexpensive vs. cheap.

Here is a list (a partial list) of items you should NOT skimp on:

-Q-tips: the "tips" aren't fluffy enough and are indistinguishable from the hard, plastic stick that separates them. So basically they're just Qs.

-Tape: spend the extra 40 cents and get something that will actually stick!

-Shampoo: unless you prefer dry hair that smells like cheap air freshener.

-Air freshener: unless you prefer a cocktail of dirty flower water, Pam cooking spray, unresolved bitterness and Ivory soap (the generic kind, of course).

-Toilet paper/tissues: there's no softer side of Sears.

-Juice: when you can't distinguish the flavor, you may want to reconsider drinking it.

portrait.

It's 3:45 AM and I am not likely to go to bed anytime soon. Today was a big day and tomorrow will be a bigger one (see previous post).

I looked through all of my facebook photo albums and I can't believe that that's me. I don't recognize myself-so (relatively) care-free. Everything was falling right into place.

Here's the timeline:

1. Birth-12th grade


2. College-the best times of my life: co-teaching with Michelle where we were food critics, pirates, mad scientists, and jesters . meeting Tim . making fun of Tim . falling in love with Tim . crying during a viewing of The Joy Luck Club . denying the tears during said viewing . hugging Gavin DeGraw . getting over Bonnie, Sally, and Iris (my former cars-may they rest in peace) . designing opposite names instead of focusing on design190 homework . finding a second home in JavaU . spray painting and proudly wearing a pink hat during graduation while sandwiched between Mishie and Darin. oh yeah, and working my butt off .

*Bonus: getting Lafayette Williams' autograph even though he was an uncredited extra in the worst movie ever made (The New World) and waving to him on campus

3. Employment- Landing a teaching job in WNY is a miracle. There is nothing college could have done to prepare me; this required so much more work than I could have imagined. It was worth it. My first class will always be my babies.


4. Engagement-best proposal ever, photos, planning, making a ton of things, more planning, and then making some more things, all the while enjoying the photos


5. Wedding-everything came together perfectly. It couldn't have been better.

((Here's where everything above becomes a blur))

6. 3 months later-1st seizure, several more, diagnosis, surgery, hope for a speedy recovery, disillusionment


7. the next 4 months-unidentified seizures, extreme fatigue, medication side-effects, visits from baby Gia, homemade food


8.the next 3 months-fatigue, migraines, pockets of normal energy and jam sessions


9. A month later (now we're in September)-elated to return to work, setting up my classroom, loving 1st grade, blessed with absolutely wonderful aides


10. The next 3 months-seizures become out of control and start to happen daily. Going to two different neurologists plus Strong Epilepsy Center to try to get some answers. Still no answers. Advised to take a leave of absence before winter break.


11. December 29-"there is a nodule of enhancement. I'm suspicious of tumor regrowth."


12. January-testing. waiting.





13.

distractions.

"February 9, 2010." A date written on every piece of paperwork and an answer given to every doctor who asks. And they all ask. They all need to know.

Every time I glance at the right corner of my computer screen or check my cell phone I am reminded of this day. I am reminded of the events leading up to this day and, more vividly, the events that followed.

I tried to play on my guitar, but had to put it down. Every song reminded me of something. My cover of "live like you're dying"(Kris Allen) clearly was not an option. "Wonderful world" by James Morrison was also not a good option ("I know that it's a wonderful world, but I can't feel it right now. I thought that I was doing well, but I just want to cry now"). The happier songs were even worse.

I can't read because when you read, you're thinking (at least that's what I teach my first graders). I got through half of a page yesterday and started thinking about other things. And then my mind wandered. And that is not good for me.

I can't focus on professional development because my babies are in the hands of a substitute.

So it looks like the best option is to waste away time by watching movies/TV and any other mindless tasks, hoping I can become so distracted that I don't remember last year; hoping I don't think about tomorrow, my appointment at Roswell to review everything.

My really-nervous-for-my-appointment song to play on guitar/sing is "Just breathe" (Anna Nalick)-but I'm saving that one for February 10th.