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.
Saturday, July 16, 2011
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.
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 meds...my 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.
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 meds...my 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.
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
insiders.
(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?
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 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.
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.
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
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.
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.
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