Monday, November 26, 2012

what tragedy does.

Sickness comes in quickly and forces you to face things that aren't comfortable. It strips you of security-even the security of knowing that you will make it through the day with no problems.

It makes you analyze your relationships in that it reveals who other people really are (it's easy to coast when you only depend on yourself). It makes you reflect-on your life, on your beliefs, on greater meaning.

You spend time waiting it out, hoping that your life will return to "normal" after a certain amount of days or months-but it can never be what it once was because you can't be who you were-and no one is who you thought they were. Or, at least, not who you need them to be.

So you try to rebuild from scratch. And it's exhausting. You try to be positive and consider it to be an opportunity to "start over," but your foundation has been torn apart.

Who knew that the cancer itself would be the easiest part to heal?

Sunday, October 28, 2012

city of gray.

"I have woven a parachute out of everything broken."
-William Stafford
Every single day when I was in the radiation machine at Roswell Park, I would imagine what it would be like to launch this project.

Next Friday is our project deadline. If it's not fully funded by then, the project fails and we get nothing. It is my hope that anyone who knows us (or happens upon this blog for whatever reason) will help us reach our goal by helping us spread the word and backing us, if you can.

Sunday, July 22, 2012

what brain injury survivors want you to know.

This article was brought to my attention by another brain tumor survivor; I could have written most of it myself-particularly:

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

One of the members of my medical team has told me that brain tumor patients have TWO brain injuries: the damage the tumor has done and then the surgery itself.

turning point.

You have all been through the trenches with me over the past few years-so I thought you deserve to hear something good: I've had a very good week! I'm sure it helps that I got to see wonderful people almost every day this week! Also-my car is back on the road and I drove for the first time in almost 2 years. I have had more than 2 good days in a row and am feeling very hopeful for the first time in a LONG time. :)
It's been an extremely difficult road-but I hope that this is the the turning point.

Friday, June 29, 2012

currently (not to be confused with "currency").

I feel as though I'm not enjoying my time because just living is quite exhausting. It takes double the amount of energy it should just to do "normal" things. Just to walk into a store is a huge milestone. I try REALLY, really hard-but sometimes it's just too much for my brain to process. It shouldn't be so stressful to go to restaurants. Every attempt at normalcy is a mental battle that I spend even more energy trying to hide.

I consider myself to be doing well when there are two or more days in a row where nothing goes wrong. This still doesn't happen often enough.

I need to get away-but how? It's been non-stop stress for 3 years and it is wearing me out. I don't even need anything fancy. I just need to be away from here. "Here" is calling the doctor and waiting for a call back from the disability office. Here is getting denial letters and lay-off emails. Here is waiting and hoping for the hours to go by quickly. Here is sitting on the floor blogging about how frustrating it is when it feels like the world is moving on when I can't-no matter how hard I try. Here feels like failure.

Maybe White Oaks Resort/Spa (or somewhere similar) will have a "brain tumor patient and spouse" weekend giveaway.

I just need life to stop raining...even for a few days.

Friday, May 25, 2012

what they don't tell you about the american dream that sometimes you can work really hard and graduate with honors and devote yourself to your profession and then all of your hard work might pay off because you might get a teaching job in a location where there are literally thousandS of applicants per opening

and then you can pour your time, money, and energy into it because it is so meaningful and important to you and you know that it is your very purpose to be there and you know that this opportunity won't always come around

but then sometimes after all of that you might find yourself in a situation where you can't work anymore because you might get very sick and what will ultimately make you better might make you even more sick

but at least on the VERY bad days, you can imagine yourself healthy and back to doing what you love and it that might help keep you motivated by giving you a reason to get better

but the world moves on even when you can't and other people who are fine will move on without you, gaining time in the field when you are unable to

and then you might get a letter in the mail

and you might try to be positive, but all you will be able to think about is how unfair it is-how it feels like your dream was stolen from you by someone without a brain tumor....but it's not anyone's fault in particular ("just" life)

and then you can just hope for the best. because that's all you've been able to do for 3 years.

and then you can write a song. (original) (remix)

Sunday, April 15, 2012


My illness has brought out the best and worst in people. I have realized who is in it for the long haul and who doesn't deserve to be a part of my life. I have learned who my real friends are. I have learned who my family is.

I have been very deeply affected-both by the selflessness of others and the cruelty of others. I have experienced true human compassion...some from complete strangers....and have also experienced abrupt coldness and indifference....some from people who have known me my entire life. some from members of my own family.

In this (what seems to be VERY LONG) journey, I have tried to make sense of things many times. I have told my story. I have blogged. These things help me to cope. However, just as I will never fully be able to understand what happened to my body, I will never fully understand what happened to the hearts of people who were supposed to care.

There are moments you never forget and, unfortunately, I remember the times people walked away just as vividly as the times people stepped up. While I have given up on expecting life to be fair, I would hope that those closest to me would be-especially after such a tragedy.

"In the end, we will remember not the words of our enemies, but the silence of our friends."
-Martin Luther King Jr.

Friday, February 17, 2012


Two weeks ago I saw my doctor's Nurse Practitioner for a general follow up/MRI results and to discuss these crazy daily episodes. He tried a few things with my seizure med and made some changes. We tried to few different things....

...and guess what?? They don't happen anymore!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

One of the many side-effects of this medication is dizziness/double vision (as is a side-effect of many meds). There are tons of side-effects for every medication (dry mouth, blindness, stroke, know the drill) so it's often hard for symptoms to be traced back to one source. The strange thing is that I have been on this medication for over a year and just started having these episodes the past few months. None of my other neuros considered this or thought to change the medication. This NP put me on an extended release version of the medication to prevent peaks and lows (which he predicted was the cause).

His tip-off was that they happened around the same time of day every day with no specific trigger and then kind of went away on their own. I have done every neuro exam a million times-walk heel-to-toe on the line, close my eyes and point to my nose, squeeze their hands as tight as I can....but he did a few I have never done before. He even asked which direction my body spun when I was having these dizziness episodes and the fact that it was clockwise was of interest to him. Hmmm. I am SOOO glad he took all of these things into consideration and didn't give the canned answer of "it's get better in time."

What an enormous relief. One step closer to getting my life back.

Tuesday, February 7, 2012

his story.

he has never complained. he doesn't make me feel bad about needing him home or about running errands or about driving me to endless appointments.

"When my ends all come undone
I don't fall apart-I don't fall apart"

I cry when I hear him playing those first chords in the other room.

There are many more beautiful lyrics he wrote but this one strikes me the most when I think about everything that has happened and what it must be like to have his perspective. He doesn't seek pity. he isn't trying to get some spotlight. No-he's hurting in silence too. But he hides it well. he has to be strong because i need him to be strong. If I mention this to him, he thinks I'm silly to compare what I have gone through to what he has gone through on the other side.

I had heard recently that during one of my first seizures 2 years ago I was on my bed, unable to move, with my eyes open, completely frozen. Tim later told me that he checked my pulse. When he told me it's ridiculous to think his experience is nearly as debilitating as mine, I told him that I had never for a second had to figure out if he was dead.

I would not choose a side. I COULD not choose a side. All I know is: I don't think I could be the person he is.

political teaching post: 14% less.

"The High Cost of Low Teacher Pay"

If nothing else, here's the first paragraph:

"When we don’t get the results we want in our military endeavors, we don’t blame the soldiers. We don’t say, “It’s these lazy soldiers and their bloated benefits plans! That’s why we haven’t done better in Afghanistan!” No, if the results aren’t there, we blame the planners. We blame the generals, the secretary of defense, the Joint Chiefs of Staff. No one contemplates blaming the men and women fighting every day in the trenches for little pay and scant recognition."

Tuesday, January 31, 2012


I look to my right and there they are: my chemotherapy pills aka the poison that will keep me nauseated, fatigued, depleted, and....alive.

Last night was my first dose for this chemo week and today was rough. REALLY rough. like-i -can't-lift-my-head-off-my-pillow-until-noon rough. and when i thought i FINALLY could, there it came. like clockwork. my daily dizzy episode. same time every single day. it lasts for an hour and then kind of goes away. i have to keep my eyes closed because the room is moving down and my eyes are moving up. this is debilitating WITHOUT chemo and all the more so with it.

(these episodes have been happening for the last two months and i have taken a number of tests to determine the cause. please be an easy fix. please be an easy fix. please be fixABLE. please.)

once that is over i have to somehow manage to make it downstairs. i SHOULD have something to eat. i KNOW i should. but the thought of food makes me sick so i suck on a cough drop just to get some calories in. as the day goes on and i get further away from last night's chemo, i can stomach 2 pieces of toast...actually 3! Go me!

usually i am generally functional the first day of chemo week and then get progressively worse as the week goes on as the chemo builds up. then it even trickles into next week. some days drinking water is painful-I can feel the drops as they make their way through my esophagus.

fifteen minutes until i take them. they taste like burnt plastic and disgusting fear. that familiar taste that warns my body that it will be put through the ringer this week. beaten up.

3 more of these cycles left and then i will have completed a year of chemotherapy. a YEAR of chemotherapy. actually you can say i will have completed more than that because before i started this "year" i did chemo every day for 6 1/2 weeks while I did radiation. So really-I did almost 14 months of chemotherapy. they'll do testing after that to determine future treatments.

I hope they don't order any more chemo after that. i REALLY hope this will be it. that May will be the end. but if they do i will take it. i will fight for my life. i will do what i need to do. i will keep that clock going. even if it means more of THIS.

Monday, January 2, 2012

thanksgiving sans the turkey.

Philippians 4:6 says "Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God" (NKJV)

My heart is always overwhelmed-I am constantly filled with fear. How can I be thankful? What is there to be thankful FOR? It gets easier and easier to be discouraged as time goes by. It took me a little bit of time to think of how I could give thanks for the circumstances life has dealt me. But I could. there is ALWAYS something.

I am thankful that I am ABLE to get treatment. I am ABLE to get chemotherapy.
Even though I had radiation-I am thankful that there is a renown cancer center 15 minutes away from me. I didn't have to travel hours each day to get there (as others I met had).
I go to physical therapy and I was able to rebuild my muscles that were lost with that steroid. I am able to walk. to run even. I worked with wonderful people who I still look forward to seeing. I had brain surgery twice-but I am thankful that it was with a highly respected surgeon-the best in our area. I was in the very best hands possible.

I take medicine twice a day. I am in a country that can provide that. that has enough medical research to make that.

There are awful things that happen every day. I stopped typing this post because I had to gag into a plastic bag. But I could use my arms to reach over and hold the bag. I can use my arms. I could see the bag because I can use my eyes.

I will be grateful for everything that gets better as it does. Often it feels like 2 steps forward, 1 step back, and 10 steps sideways. I get frustrated and will continue to get frustrated when it does.

but, even if it is only for today, I can try to be thankful.

I am off to an appointment. I can make it there because we own a car. because I have an amazing husband who has been by my side this whole time-unwavering. because there are people who can drive me. there are professionals who have studied medicine so they can try to fix me.

I have to have faith that this will get better soon. I have to keep trying. it is so hard-but I have to keep trying. and when i feel like i can't i know that there are people who will help me. I know some wonderful, wonderful people. and for that, i am thankful.
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