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.

servings.

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.

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.

fixer-upper.

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.

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".

overdosed.

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.

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.