Thursday, December 22, 2011

Other post: My case FOR "Happy Holidays!"

I am NOT against people wishing me "happy holidays".

Within a week there is Christmas and New Year's and days in between when we are celebrating times with family. These are two holidays. Plural. When a stranger or receptionist or someone I haven't seen in a while says, "Happy Holidays!" they are simply hoping that I enjoy these 2 days (and the eves preceding them). For most it is not an act of political correctness-but, rather, a lack of specification. '

More often than not, it is also used as a greeting or as a good bye. How often do people use "how are you?" as a salutation and automatically get a response of "good"? "Happy Holidays" is the awkward filler for this time of year.

In fact, if we're getting technical, a "holiday" is defined as: (noun) A day of festivity or recreation when no work is done. Sounds like the final days of December to me! What is wrong with getting wished that?

We are not entitled to be wished anything from anyone-particularly strangers. But they are being kind.

I do, however, think we should call things what they are. It is a "Christmas tree", it is a "Menorah", etc.

You can certain wish me a Merry Christmas-but I am not offended either way. I know what I believe and, let's be honest with ourselves: we are not exactly quoting scripture whilst tearing open gifts from amazon wish lists. So go ahead. Wish me days of festivity with my family. We will certainly take time to thank God for his provision. We will enjoy these days together without stressing over work.

I do not understand why there is so much fuss about a non-issue.

That being said, Happy Holidays, blog readers!

Lighter post: phone options and other tales.

I've heard MORE THAN my fair share of phone options the past 2 years and there are things that just blow my mind (so to speak):

1. Who still uses a rotary phone?

2. "If this is an emergency, hang up and dial '911'." Really? Because I thought I should just call my eye doctor first.

And then today I call the Central Library downtown to see if they ever rent out big books (which they don't-which I found out after I had to explain to them what big books are). Of course there are menu options since it's the main hub of the Erie County library system (and the most magical/overwhelming place ever!), the first of which I was not prepared for:

"Your call may be monitored for quality purposes."

At the LIBRARY???!! First of all, if you have ever been in the central library check-out line you know that they are CLEARLY not concerned with customer service. Most library staffers fall into 4 categories: bitter middle-aged women who hate change, dapper old men who wear bow ties, clueless teenagers, and jolly 90-year-old volunteers (who, unfortunately, most patrons avoid since their grandparent-esque charm doesn't overshadow their speed-or lack thereof). But every workplace has its gems. My sister-in-law, for example would fit into the "gem" category. *Note: I am NOT referring to school librarians.

Who is monitoring these calls? What exactly are they looking for? Is the employee going to recommend a banned book? Maybe the kid in the background ringing the bell as a reward for reading his summer list is ringing too loudly? Did they transfer me to "Mark Twain" instead of "Rare collections"? Or maybe they're listening for me. hmmm. My fines DID go to collections last year. Am I blacklisted?

Maybe I tick them off because perhaps I am overzealous in my clicking of the "request item" button on the website. This requires that the poor workers sift through the children's section, find the book (s) and deliver them to my library of choice. The children's section is a shelving mish-mosh of letters of authors' names. When a parent has finished reading "Cowboy and Octopus" by Jon Scieszka on the carpet with their child they place is in the "s" section. in no particular order. if I want to find it, i look through the "s" section. the ENTIRE "s" section. when I order a book from a different library, THEY look through the entire "s" section and I simply pick it up at the front desk of my library of choice.

if I have options I'm going to take them. without fear of monitoring, without a rotary phone, and, it is hoped, without needing to call 911.

Sunday, November 20, 2011


i found out that this tumor was the size of a cherry tomato. i don't know how large the other one was. it's strange to imagine this malignant mass of cells joining to become that large. "strange" isn't the right word; whatever the word should be eludes me for now. i'm still digesting.

worst salad ever.

Monday, November 14, 2011

brush strokes.

in some ways, i want to be like my hair.

it is resilient: it was shaved off completely-twice-and still grew back. it was cut into but still grew back. thick. and even protected the wound it surrounded.

it is strong: some follicles were destroyed at their very root during treatment but rebuilt themselves and returned, anew.

it is rebellious: when it grew back it parted on the other side. it does what it wants every day and doesn't care how ridiculous it looks.

but there is another side (swept bang) to it:

many hairs fall out daily, but not in an organized clump. there is no obvious "proof" of my experience, treatment or loss. to the onlooker i am whole. to the onlooker there is an entire head of hair that has existed for 26 years without radical interruption.

no, they do not fall out at once. individual strands cling to my clothes and my pillow and my towels and everything they can cling to as if to mock my hope that this could soon be over. daily i am reminded that there are parts of me that are not strong enough to hold on. the strong. thick hairs cover these tiny empty spots so they go unnoticed. progress masks deficits. no one would know if i didn't tell them. but i know. i am the one who sees it. i am the one who lives it.

the truth is-no matter how sturdy the rest of them seem, there are always some that fall.

Sunday, November 6, 2011


That last one is the most important part of getting through the past two years. my husband has had to have an unbelievable amount of strength. He has had to be EVERYTHING to me. he has had to reassure. he has had to listen-SO much listening! he has seen every frustration and so, so much pain. we have this perception of what love is until it has to kick into first gear without any warning.

sometimes it was a hospital chair and knowing he would stay with me. during my week-long EEG hospital stays he said there wasn't anywhere else he'd rather be.

it was him with his phone in his hand and his arms ready for mine as crouched into a corner waiting for the news.

it was him telling me how beautiful he thought i was-even when i had no hair and when my cheeks were puffy from the steroid i was on.

it's him coming home with a huge smile on his face-SO happy to see me-even though there wasn't anything for me to be smiling about. even though i would have a new sad thing to tell him. there are always new sad things to tell him.

it's him praying with me.

it's what he does every single day. i couldn't do what he does; i can't even articulate all of it in blog post (especially since i am running out of tissues as i type).

he's the one thing that hasn't gone to waste. i'm so happy he's my family.

Sunday, October 30, 2011

control. alt.

delete. if only it was that easy to restart.

"Your body is a computer-you have to let it reboot-especially with all of the radiation." i'm so sick of hearing that. apparently there are many programs that still need to close. when i close one ("seizures" or "muscle atrophy" or "vertigo"), then another one opens. they keep popping up-new symptomes, new issues, new worries. a great deal of "harmful threats" to my system have not been blocked.

lately i have been having "visual disturbances"-my eyes will fade in and out and things start to move around a bit (kind of a milder version of the extreme vertigo I was having). some episodes are shorter than others. so it was time for an eye doctor appointment. i was looking forward to this one because i thought it would be an easy fix. they just do some eye tests and there's my answer, right?

nope. in the eye doctor's words, "There is nothing I can do to make all of these symptoms go away." he said that my eyes will adjust with time as they heal.

with time. with time. with time. it's always the same thing. i hate that stupid hourglass.

at night i'm happy that another day has gone by because that means i am closer to the "in time" everyone's talking about. but am i?

this weekend there's been a clicking in the back of my head and a tingling sensation on the right side of my skull. i'll have to call a doctor (maybe i'll put all of their names in a hat and pick a one) and let them know. but it probably will just get better with time. in this case, that would actually be a relief if it's something that will resolve itself and it's not something worse.

then there's this pressure under what feels like my entire face. when i blink my eyes i feel a pull on the top of my head. forget about raising my eyebrows-that has been a lost cause. but that will get better in time, right? and my headaches will disappear?

i always hope there's an easier explanation to new things that arise than there actually is. often there is no explanation. that makes it so much worse.

when will everything align? when will "time" come?

I eagerly await the day my arrow can finally click "ok".

Monday, September 26, 2011


Saturday 11:00 pm-evening medications
Saturday 11:30 pm-filling pill box for the next week, noticing I only have enough for two days...

I don't know what happened between the time I had my medications in my hands and when I took them. I take a few pills every night so, for some reason, i must have gotten distracted and just instinctively took the ones I was supposed to put in my box.

We were about to go upstairs to bed and I grabbed my my pill box so we could bring it up with us. That's when we saw there were none in there and that the original medication bottles weren't as full as they should be. We panicked and looked everywhere to see if maybe I accidentally dropped them or something. i just couldn't remember.

Nope. i took them. i took triple the amount of anti-seizure medication I was supposed to take that night. (note: the tumor was in the memory side of the brain; fortunately i've had very few memory issues-unfortunately this was one of them.)

my body began to shake uncontrollably and everything was spinning. Tim carried me to the car so we could go to the Emergency Room. As is typical with every ER visit, there were hours of waiting time. I couldn't look anywhere so I tried to close my eyes but my body still shook.

My ekg and vital signs were okay and now I had to wait out the symptoms. After dry-heaving into my hospital gown as my limbs flailed about, Tim carried me into our house. I prayed I would just fall asleep. sleeping would be so much better than being awake.

It was like a nightmarish mixture of seizures and vertigo-but much, much worse than both-and it wouldn't stop. I made it to the couch and tim slept on the floor next to me. that night was one of the most frightening nights of my life. i continued to pray i would just fall asleep and that it would just go away. but it didn't.

yesterday I slept most of the day. i can handle drowsiness. it's so much better than any other symptom. it's so much better than being awake. i was happy when time went by because every minute was one closer to the medication half-life. one minute closer to getting this out of my system.

there were finally a few "good" days in a row when everything seemed normal from top to bottom, but those days were temporarily halted by this enormous mistake.

obstacles continue. at least this time, we know it'll go away. these are symptoms that can be explained and a source can be identified. but that didn't make it any more bearable.

maybe tomorrow the symptoms will be gone completely and it will be better to be awake.

Tuesday, August 2, 2011

right angles.

it may sound cliche, but there are SO many things we take for granted. i never knew just how many things that could include.

Last week I actually thanked God that I was able to turn to "toss and turn" in bed without getting dizzy. When the dizziness issues started at the end of June I had to basically be lifted into bed and positioned on my pillows. If I turned my head or body either way, the world would spin. Now when I wake up in the middle of the night and try to turn the other way to get more comfortable and STILL don't get dizzy, I thank God again.

When I sit up from bed and get out of chairs by myself without getting woozy, I am surprised and very, very grateful. this was not the case for most of the past month (but you already know that from the last post). I am overjoyed every time.

I keep track of things in a health journal and every day that doesn't include vertigo gets a "no vertigo-yay!" on its date. After a few physical therapy sessions to readjust the crystals from my inner ear back to where they should be (they explain it better), I have not had an attack since July 21 and many of the other symptoms have improved significantly.

When we stand up to walk, we assume we can do just that: walk. We assume that our vestibular system is working and that information is being sent from our brains to our eyes and that our bodies know where they are in space so that we can balance and that the muscles in our legs will support us. Many of these functions have been temporarily compromised, but let's talk about the muscles in my legs, which began atrophying due to the steroid. This is reversible with physical therapy (which I do twice a week) and with weaning off the steroid, but that doesn't make it any less frustrating. I walked from my room to the bathroom all by myself today without holding onto anything. I took 3 walks around the living room today. I consider it a successful walk when my legs feel strong, when I can walk with my head up rather than looking down and when my arms swing naturally at my sides rather than tensed in the air to keep balance. "Look at meee!" is a victorious announcement when this happens. I will not take my muscles for granted. I will thank God for every fiber and every bone and every system that works together.

One of the days after last month's chemo cycle, everything tasted DISGUSTING (it can do strange things to your taste buds sometimes). I even tried to eat a piece of raspberry-filled Ghirardelli chocolate and it tasted like gravel. we tried out various foods and none of them worked. my mom brought up some watermelon and I gave it a try. it worked! watermelon tasted like watermelon and it tasted good! I cried happy tears.

There are some frightening statistics about my specific type of tumor. (tip: never research your diagnosis. Never look where it says "prognosis.") We just went to an appointment where the doctor told us that since the surgery was done well and since I underwent radiation and chemotherapy and with my continued chemo treatments I can expect to have a normal lifespan. he was smiling when he said this. I was smiling when he said this. even though i honestly hadn't thought about the percentages in a long time and certainly haven't dwelt on them, the joy of having a doctor confirm this hope is something that cannot possibly put into words.

People around my age are "pushing 30"; when I turn 30, I have just beaten a statistic (which my doctor said that I would). I do not fear turning 30 or 40 or 50 or any "old" age; I look forward to it because that means that I. have. survived.

I am alive. I underwent the most serious and dangerous type of surgery that exists. twice. And I AM ALIVE.

One day I will not be surprised when everything feels normal and when everything works the way it should-but I will remain very, very grateful.

Saturday, July 16, 2011

plateau-nly hope.

surely there must be some sort of plateau of awfulness-where everything stops being so...increasingly awful and levels stop taunting me with their existence. With every experience, I feel like I could say, "this is the worst thing that's ever happened to me..." and then more and more arrive and then I'm into my next-"no, this is the worst thing that's ever happened to me" season.

I live in constant fear. I have lived here for a year and a half. these particular waters are deeper-much more frightening. and i can't swim.

Since June 20th, there have been only 2 days that did not involve severe-vertigo attacks. I am grateful for those days, but I am always wondering when the next attack is coming. Today was one of those good days; I'm still wondering if something is on its way.

Now when I change physical positions (from sitting on the couch to standing up, getting out of the bed, moving my head to a different side), I have to close my eyes so my body can re-center itself and so I don't get dizzy. Then I have to have someone help me to stand up or change said positions so I don't get dizzy. and so I can avoid a vertigo attack as much as possible. and because my legs are now weak (see previous post about the steroid's effects).

These are all new things. I have never had to look at my feet to make sure they were still working the right way. I have never had to pre-plan so many of my movements just to avoid something awful happening to me. I HAVE had to have someone walk with me on the stairs, but that was weeks/months ago. I had been improving. HAD.

I keep counting down the days until this big vestibular/vertigo/dizziness/visual/balance test I have coming up. Ok, 10 days...10 days...10 days...but what happens after that? It feels like these issues will never end-they just become more out of control. Now I just wait and wonder...what's coming next?

I need to be able to walk without looking down at my legs. I need to be able to move without closing my eyes. I need to be able to know I can function an entire day without having to wrap myself into a fetal position as the entire world spins. I need to know that these are sure things-not just "good day" things. I need certainty.

Fear comes not only from these issues themselves-but also in the fact that they were NOT even PART of the possible effects mentioned to us about treatments, medicines, etc-they crept up on us completely unaware. What else will do the same? What other unexpected effects should I...expect?

It is terrifying to know that there are things happening in my brain and body that my team of physicians do not understand, but I have faith. I have to. I have faith that I can and will overcome, but I can't do it alone: I have to hope that every prayer and every song and every bit of strength is being sent to heal this completely. sent by others. sent on my behalf. because i can't do it alone. and i know that i am not.

Monday, July 11, 2011

identity crisis.

me: chemotherapy is for people who are sick.

me: physical therapy is for people who are broken.

tim: you ARE sick and broken.

I'm sure you know about the chemo for the next year since there is an "unspecified malignant neoplasm"-basically a small group of cells that want to multiply quickly and, if do they do, this tumor will infiltrate and increase in aggression. Even though it's technically a benign tumor, they are treating it aggressively because of this. It already recurred at a higher grade. This tumor instinctively does this. Do I have to convince you of what happens if this one recurs at a higher grade?

But the physical therapy? That one through me for a loop. During radiation, I had to take a steroid to prevent brain swelling. This steroid has become (almost) the worst part of recovery. Just taper off of it, right? WRONG. If it was that easy, I would have been out of this nightmare 2 months ago.

1. This type of steroid weakens the legs and I have my first appointment tomorrow morning for physical therapy. The words "paraparesis" and "myopathy" were thrown around on the script. I fell a few days ago-my legs just gave out and I often have someone walk with me or I hold onto anything near me. Falling onto a wooden floor will have that effect on a person. I know it will be okay-but-it's mid-July. I'm a teacher. I don't HAVE time to waste on this nonsense.

2. VERTIGO. There's speculation that the radiation itself may have triggered some sort of inner ear infection. It's impossible to describe how debilitating it is-it's more than just spinning or being dizzy (not that those are fun either). It's closing your eyes and not being able to escape what is happening to the world or your body and then feeling extreme nausea. This happened to me every single day since the end of June-for hours at a time. Luckily, as of this week it has "only" happened for a few minutes instead of hours (thank you, prayer and a stronger med). I'm going for a 2 hour test to determine the problem. I wish the test was today. I can't handle 15 more days of this.

This is no way to live.

Saturday, June 18, 2011

brown paper package.

The oral chemotherapy I take is manufactured by and delivered from a special pharmacy. I will never forget the day the first batch arrived.

I was given very specific instructions on how and when to take it-how long to wait after eating to take the anti-nausea pill, how long to wait after that for the chemo, how long to wait before taking my other evening from 6-11 was to be meticulously scheduled.

On that first night, once all the necessary protocols were followed, we opened the box and took out the card that contained the first set of pills.

I held them in my hand and stared at them for a long time, trembling. these pills held poison that i was about to ingest into my body. these chemicals were necessary to kill rapidly-dividing cells. these chemicals were necessary. these chemicals were necessary. I was terrified. and rightly so.

That first night brought on 9 rounds of violent vomiting. Within the first 3 days, I lost 4 pounds. Luckily doc put me on a much, much stronger anti-nausea med and those symptoms improved significantly as the days went on until they were basically non-existent (don't worry-that weight came back on in no time). I also followed the guidelines about what to eat and at what temperature, level of spiciness, and so on.

I took these pills every day for 6 weeks while also undergoing radiation treatments. Then I was to have four weeks "off" of both treatments so the healthy cells that were damaged in the process could rebuild themselves. (Meanwhile they are weaning me off a steroid I had to take to prevent brain swelling during radiation, which has its own effects-perhaps a different post for this one.)

Which brings us to now. A package arrived on Thursday that held my next batch of chemotherapy drugs. Starting tomorrow I will be 5 days on/23 days off for 12 months. These pills will be double the dose of what I took last cycle since I will be taking them fewer days a month.

At a previous visit, my neuro-oncologist said that I will be eased up to a higher dose. I thought that meant that they will ease me into this double dose for this next cycle. Wrong again. I will start with the double dose and might be increased to an even higher dosage in the upcoming months.

At this point you'd think I would not be fazed by anything I learn at my appointments. Nope. Still troubled.

On Thursday, when this package arrived, I opened the box to see the pills I will be taking on Monday and every 28 days after that.

I held them in my hand and stared at them for a long time, trembling.

Wednesday, June 8, 2011

beautiful people.

I had my eye out for brain tumor walks for a while and was really excited when I saw that one was coming to Buffalo. so I made up a team name that amused me (it doesn't take much) and signed up.

I posted a link to it on facebook in NOVEMBER (in case you missed the obnoxious oval in the screenshot), hoping more teams around town would sign up and make the event successful. I liked the idea of a big event like this coming to Buffalo every year. I loved the idea of being able to walk among survivors and friends and friends of survivors and people from around Buffalo who just want to support a cause.

At that time I was having various issues but a second brain tumor was not even discovered until a month later. TO THE DAY. (the news came after hours. I wished my neurosurgeon an early happy new year.)

Months later, an "event" appeared on my facebook news-feed. an event that earned a spot on the "top news" section. an event where the default photo was my face silk-screened onto a t-shirt. an event i couldn't believe was "happening now".

and it didn't stop there. the items for sale kept popping up, like beautiful teal bubbles of compassion. on the jerseys of my husband's hockey team. on a tote held by a friend in a different state. on a t-shirt worn by a friend of my husband's mom (who I don't know). on a sign on a tent in Delaware Park. on a group of people who joined a team-who understand the severity of the situation-who want to raise money for this under-funded disease ("Why did this happen?" "We have no idea.")-who want to show they care.

Beautiful people had it in their hearts to create. Beautiful people made it possible to wear my heart on their sleeves. Beautiful people wore my heart on their sleeves.

*beautiful people part 2 (the benefit edition) still to come.

Monday, May 30, 2011


(This post was written 5/9/11)

Down the hallway and to the right of the general Radiation Medicine waiting room is the treatment waiting room: an eight-chaired meeting place of survivors. of people who know all too well the difference between rights and privileges.

This room holds a few regulars mixed in with some new faces, depending on schedules and how the machines are running that day.

With a sentiment somewhere between detention and prison lies the initial "what are you in for?" conversation and everyone is happy to share their story. There's no need to explain how difficult it was and continues to be; we all understand without words. No matter what stage or grade or location or level of aggression, we're all there for the same reason: long-term survival. We all go on machines that administer beams that kill fast-growing cells. Cells that need to be killed so they don't become cancerous. Some of us receive lower doses of radiation. Most of us have interesting hairdos.

When someone finishes radiation, a well-intended outsider might say, "congratulations! You're all done!" or, even WORSE, say, "think of it THIS way..." No. Not us. Those who sat together through 6 1/2 weeks of treatments will not offer cliches. We certainly won't downplay a serious situation that requires serious treatments.

(Side note: for outsiders who think "benign" means "okay" you are wrong. Even if it's not life-threatening, every tumor is serious-even more so with brain tumors.)

When we (the insiders) look at each other and say, "congratulations" for finishing a round of radiation we mean "I understand what you've gone through. You have a positive spirit, but your journey is far from over. Your smile does not deceive me; you look good on the outside, but I know that you are screaming inside. I'm happy you don't have to drive to the hospital every day, but this road is going to be very difficult and very, very frightening."

Everyone's eyes are filled with hope and desperation.

No matter what the case, everyone is wondering the same thing: what is going to happen to me?

Sunday, May 29, 2011

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

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.

Monday, March 28, 2011

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


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.


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.


Wednesday, February 23, 2011

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.

Tuesday, February 22, 2011

Thursday, February 17, 2011

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.

Wednesday, February 9, 2011


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.



"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.

Thursday, January 27, 2011

lighter note: glitch in the kitch.

Elephant in the room: the kitchen sink.

On the part of the designer, why is there this need to put faux drawers right under the faucet?

Everybody knows (besides that turkey and some mistletoe will help to make the season bright) that said drawers do NOT open and, consequently, have absolutely no use/value.

The silverware drawer must feel awfully lonely next to this intentional void.

*No forks were harmed during the publication of this post. Actually-one WAS, but we didn't like that one anyway.

Sunday, January 23, 2011

lighter note: buses, hot dogs and puppies

In November, my students wrote fan mail to Mo Willems, author of "Don't Let the Pigeon Drive the Bus" and the subsequent pigeon stories (plus a slew of other books too, but let's keep our eyes on the prize: the pigeon). A coworker of mine told me that he wrote my students back last week! He sent a poster that said "Mrs. Lipps' class is awesome!" and signed it! How sweet is that?

Thursday, January 20, 2011


Copay costs: $10 per visit
EEG services: $10 per visit
MRI services: $10 per visit
Parking at Roswell: varied
Parking at BGH: varied
Having people "close" to you not show concern that you have a brain tumor: very, very taxing

This is a really big deal. Because I already had one (a tumor, a surgery, a recovery), does that make this finding insignificant? Is this news UNshocking? Are people calloused by the word "tumor" since it has come up so many times this year?

Abnormal cells regrew in my brain within just a few months. IN. MY. BRAIN. After this surgery, 10% of my temporal lobe will be removed. Healthy tissue surrounding the tumor will also be removed to do more research in an attempt to prevent future recurrences. There will never be complete assurance that there won't be future recurrences. There is always a chance. I will have to get MRIs done indefinitely.

I'm not sure people understand just how serious/dangerous/unbelievably frightening this is. There are incredible risks.

There's a silly quote out there about people not deserving your best if they don't love you at your worst. Cliche as it may be, the sentiment is absolutely applicable. Everything has more significance now. Everything has more weight, whether it be kindness or neglect (not gonna lie, I put on a few pounds myself).

Please don't tell me to look on the bright side. I had 238 seizures in the month of December (no exaggeration; we keep a journal of every one). There is no positive spin on that.

Don't misunderstand; many people have reached out with kind words. It's just that-the ones I'm supposed to rely on the most have delivered the least.
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