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.
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