Saturday, August 22, 2015

What made this week challenging?

On Monday, my neuro-oncologist said I should get a port that week.  Soon.  Like, soon.  It's the thing that installs a whole track of stuff into my body so that when they need to pump chemo stuff into me, it's easy for them and not painful for me.  He wants that stuff in, before the tumor takes away any more of my brain.

Tuesday I had so much pain in my head and body that I felt terrible.  I kept taking Advil, and it only took the edge off.  I was afraid that I was going to have a migraine.  I was afraid that this was a sign of the tumor growing fast, being big enough to be hurting me.

Between Tuesday and Wednesday, I was vomiting.

A very serious comment I've written to one of my doctor.
Very shortly after, Brian got in touch with the doctor,
who said that I'm a step away from going to the ER.
Ultimately, I didn't have to do that.
Then on Wednesday I was so tired that sitting up was too much--so I lay in bed.  And slept hard.  In the moments when I woke up I kept thinking I could do something, and instantly I'd become nauseated.  So I stayed in bed for 12 hours, got up for four hours, and then was out again.  I couldn't really be afraid because I couldn't function that day.  I wrote a few emails, and they were completely incoherent.

Thursday I felt better, which is good because my neuro-oncologist wanted me to get my port ASAP.  Since I hadn't been in the ER, then it was time to stick some stuff into my body.  My neuro-oncologist (can I just call him Scott?) wants them to plug me up as quickly as possible.  So I went through that four-hour process (thank you, Claire!).  Nothing to eat or drink after midnight, for a port thing at 3:00pm.  I skipped that and did both.

Friday I felt coherent, but my port hurt while everything was healing itself.  Couldn't really use my arm at all (not supposed to).  Loads of Advil.  Then I was feeling much, much better.  I was (and am) grateful for this product that might help.

Now it's Saturday.  I made coffee cake, then I was exhausted and needed to sleep until 10:30.  But when Conseula and Claire arrived for our SNWF (Super Ninja Writing Force), everything was great!   They saw where I live.  They sat at the kitchen table and we analyzed.  I got a glimpse of this house that will welcome my friends.  After, I wrote them notes about how much it meant to have them at the house, recognizing how much they mean to me, wanting this to be a house that will welcome my friends.

It's an odd week.  Will I keep feeling this up and down, this unpredictablilty?  How am I going to teach?  (Let's note that I haven't written the syllabus yet--but I will!)  Will my mind, my brain, allow me to write, to think?  You know, theoretically I'm writing a book--3/4 of the way through.  Will I be able to finish it?

And of course, when I wrote that last sentence, I thought it the way many of you don't:  Will I be able to finish it before I die?

An odd day.  An odd 16 days.

I'll probably go to sleep again for a nap.

15 comments:

  1. Hi, Alison. Thanks for keeping us informed. I wish there were something helpful that I could say or do. Unfortunately, I lack relevant medical knowledge, have no magical abilities, and am not religious. So, I'll say this: I'm thinking of you, hoping that the treatment-via-port proves successful, and (of course) willing your brain tumor to STOP growing already. (I mean, it's long since proved its point; it needs to step down & GO AWAY.)

    ReplyDelete
  2. Also, what can your friends do? Especially those of us who live at some distance from you? If there's another blog post (by you or by someone else) that answers this question, please just direct me there.

    ReplyDelete
    Replies
    1. Thank you--I accept the encouragement for the tumor to shrink, having its experience and stepping down.

      I appreciate your willingness to help. I appreciate that and may well request! I'm having this for a full year, so what I'm thinking is that I'll remind people in April--THAT is going to be a time when it'll be easy to have moved along, and I know I'll need support. So help me remember this.

      Delete
    2. OK — I've added "Remind Alison Piepmeier" to my calendar for April 2nd, 2016. (I didn't choose April 1st because April Fool's Day.) And so... I will send you a reminder then!

      Delete
  3. If I lived near you, I'd be over there lickety-split with medical marijuana and donuts. Thank you for letting us know what you're going through. Despite the distance, I feel you suffering and hope that everything improves and does so quickly. I know that you have amazing strength and courage. One day at a time.

    ReplyDelete
    Replies
    1. Yes, medical marijuana and donuts. Perfect.

      Delete
  4. I like the 'medical marijuana comment' because Med marijuana was soooo immensely helpful to my friend Shelly's son's being during his very intense chemo treatment for his glioblastomas- it gave him crucial appetite that he needed to sustain weight for treatment, enabled him to be off pain meds and even made him "chatty" (lol)....

    I hope you still have me in mind to play chauffeur-and I can also kick my mad Grad assistant skills in, if you need help with work.... I have the time and can make the time...and I do live near you- I will private message you my phone number to you on FB... ps: love your brother's black and white pics of you and Maybelle. You're in my thoughts Alison...

    ReplyDelete
    Replies
    1. Thank you, Maggie! Have a look at what I wrote to Phil, above. Thinking about me in the next few months--I think I'll need support then.

      Delete
  5. Sending love and support to you in this difficult time.

    ReplyDelete
  6. This is from Rosemarie Garland-Thomson: sending you love and support in this difficult time

    ReplyDelete
    Replies
    1. Thank you, Rosemarie--I will suck it up! Send me the good stuff!

      Delete
  7. Dear Alison,
    we don't know each other - I read you from Montreal, where I teach and write about neurodiversity and make artwork. These last few days I've wondered about the politics of lurking and have thought about you so much that I just wanted you to know that. These must be hard times. I wanted you to know how important your writing is, and how people think of you from afar.

    ReplyDelete
    Replies
    1. It's super-cool that you're reading this--and thank you so much for letting me know!

      Delete