In The Quiet

I have been pretty quiet on my blog for a bit now. Some of it because I’m going through stuff in my head, other reasons just being that I haven’t had much to report on my illness. Last year I couldn’t seem to stabilize, this year I have.

But it’s July 17. And aside from the insanity of the world and my country’s “leaders”, losses (George Romero. You will be missed.), and life, the universe, and fish; July 17, 2001 is the date my before became my after. Post part-of-my-world-didn’t-make-sense, post PTSD, post Rainbow baby, sixteen years later I am a very different person. And so I usually stop and take stock on July 17.

38029_1436743031126_1569088_n

The stuff I’m going through in my head? I’m trying to figure out how to want to live again. This is the kind of thing I haven’t touched on in my posts about scans and tests and insane amounts of radiation. We talk about the scans, the tests, the treatments, surgeries, recoveries, and medications of chronic illness, but what about when they tell you it’s inoperable? Incurable?

I got told I have a relatively small, most-likely benign tumor in my brain *but* it is inoperable, incurable, post-treatment (radiation) stable, but I’m still a brain cancer patient. I spent two years (give or take) preparing to die.

Inoperable, chemo’s not an option, radiation means scary complications are possible, and in some cases (brain edema) expected. I fought with my oncologist and refused steroids because the patient cases I read about them scared the hell out of me. High dose radiation scared me, the specific steroids for the brain edema scared me more. So I fought with him and fought through three weeks of brain edema and a trip to the ER that required meds, fluids, and a surprisingly high dose of potassium before they would release me.

Three years later I’m pretty stable. (aside from the awesomely clumsy episode of me dropping cleaning supplies on the bridge of my nose yesterday…….frickin OW)

Last year I couldn’t seem to stabilize. I had MRSA in my lungs and throat and spent almost an entire year coughing up green yuck. Another trip down the stairs. Frontal lobe spikes on my EEG. This year, I finally got my lungs back, I’m still clumsy but the stairs and I have an understanding for now, and I can (usually) finish a sentence.

14100273_10208097750934088_3135696386006341473_n

My body seems to take a year to get through something. Instead of having pneumonia, getting antibiotics, and recovering; I had pneumonia, lots of antibiotics, 3 different inhalers, and eventually in-home oxygen when my O2 levels dropped under 86% walking around my doctor’s office before, about a year later, I recovered.

Dunno why. But a lot of things take me a year.

Throw an artificial hip (10 years ago this November), a brain tumor, and crappy MRSA lungs at me and I start making peace with my the great hereafter. Or something along those lines.

We talk a lot about life with an illness or during a treatment, but we don’t mention staring into the mirror and making peace with your mortal coil. But it does happen, and we should know we’re not alone. I should know I’m not alone.

So I’m kind of, sort of, coming out the other side of that. I’m thinking this stupid thing won’t kill me. At least not yet.

So while I’m pretty quiet on my blog, my journals show I’m still thinking, writing, struggling. I’m still living.

6 responses

  1. Hello. My eyes started to fill with tears when reading this.
    You are not alone.
    You are amazing, and living, and your body has fought so much to keep you here.
    I can’t begin to relate to what you have gone through, and still are dealing with. However, after suddenly losing the hearing in my left ear, and being told after scans and lots of treatments, that the specialists just don’t have enough research on this problem to give me a reason for this, I have been also thinking about my changed life. I now struggle with communication, have a constant pressure in my ears, balance issues, tinnitus, and a sensitivity to sound. I don’t want this lower quality of life. But, this is the reality for me. I am alive. There are people tackling much more scarier things. It’s just going to take me time to appreciate my days, and to understand how to make the most of my life as it is now.
    I hope you can work things through in your mind. I hope your body becomes stronger.
    I hope you will enjoy every day.
    Thank you for sharing such a personal blog post.
    Take care
    Carly

    Liked by 1 person

    1. Ohmygoodness! I didn’t mean to make anyone cry. I was pondering life with a serious, turns-out-its-lifetime illness.
      I was reading some of your posts about scans and the TMJ treatment practitioner, that sounds like sometimes you must wonder if you wandered into some sci-fi show or something.

      You have a very unique story! Thank you for sharing your journey with your readers!
      I am learning to live in a new reality, much like you. Sometimes we just have to stop and take stock and lean on each other.
      *hugs* ~ X

      Liked by 1 person

      1. Yes it has all been a bit of a crazy adventure!

        I just nominated you for the Liebster Award! Please check it out here:
        https://myhearinglossstory.wordpress.com/2017/07/19/the-liebster-award/

        Take care
        Carly

        Liked by 1 person

        1. WOW. Thank you!!

          Liked by 1 person

          1. You’re very welcome 🙂

            Like

Have you any idea why a raven is like a writing desk?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: