Thursday, June 25, 2015

Well shit.

I've taken a break from this blog for, oh, about a year now, as I'm sure some of you have noticed.  I think the political nature of my previous post gave a fair indicator that I was no longer using it as it was intended, as a sort of release valve for the pressures of cancer patienthood, then cancer survivorship.  There have been a few other topics I've considered broaching from time to time, particularly transhumanism (cybernetics), but have never felt fully inspired to attack head on.


Seems I'm no longer a straight-up cancer survivor, as I've slipped back into patienthood.  In fact, I've slipped pretty heavily.  They know I have grade 3 cancer and suspect GBM4, so they're treating me as such.  Which is... fine, I guess.  It's fine.  I've been recovering with my parents since early May, when I apparently lost some time.  About a week, I've been told.  My mom says I was pleasant if not very passive during that week but I don't remember a moment of it.  At least I don't think I do.  They took away my driver's license so I'm kind of stuck here now, and they aren't letting me work, which in a bigger view makes a lot of sense.  Don't want to give too much independence to someone who doesn't remember what he's been up to. 


Loyal readers, this might be it for me.


So, details.  Seems a tumor can grow again without enhancing on the MRI, then suddenly, like flipping a switch, the whole thing lights up like a Christmas tree.  That's what happened to me.  I have several tumors now, all in the brain, which is also not unexpected.  They don't know how long it's been growing but we all saw this coming.  We threw everything we had at it the first time around, knowing we weren't saving anything for the second time.  Well, this is the second time.  I tried a special clinical trial limited to fewer than 100 patients nationwide and that's what gave me that blackout, or so I'm told.  Now I'm on Avastin, which prevents blood supply growth.  My feet look like water balloons.  No one's telling me to get my affairs in order just yet but whenever I bring up the topic of the future, things get tense.  Mom is driving me absolutely nuts.  Whenever I say I'm going to go to bed, she bum-rushes me with a huge list of things she needs me to do, or pointless questions, or assumptions she's made about the doctor's point of view and now advocates as the given truth.  If I ever push back, she acts like I'm viciously attacking her.  I'm dying, mom.  I'm dying.  Let this be about me.  Just this once.

16 comments:

  1. I'm so sorry to hear about the return of your tumor. I have no words- I cannot imagine what you are going through. I'm praying for you- even though you don't believe ;)
    Your blog helped me SO MUCH following my diagnosis and through treatment. Thank you!

    ReplyDelete
  2. Very sorry to hear about the return of your tumor. I really enjoy reading your posts and check back from time to time to see how you are doing. You're an excellent writer

    ReplyDelete
  3. Knightly, I'm so sorry to hear about the regrowth. I hope the Avastin is working for you. From what I've heard it works better for a lot of people than Temodar does. Hang in there...

    -GBMSibling

    ReplyDelete
  4. In a way I know how you feel, as my astrocytoma II recurred as GIII a year ago. Still surgery or multiple tumors makes a big difference, I know as I still have unused chemo etc., but after all once you got this piece of shit in your brain you are in for life, shorter or longer may it be. Very deppressing to read these news as sooo many bloggers have recently taken turn to worse. Anyway good luck, even if it only means dying in your sleep before hospice or worse.

    ReplyDelete
  5. Knightly,
    you know I've always been on your side. You were so kind to me when duke was sick. Buddy, you still owe me that cup of joe.
    your pal, Joan

    ReplyDelete
  6. Knightly, I'm hoping for you that things are still going okay. At least okay. Avastin can do a lot for you, I've heard, and I'm sending all my good thoughts your way. Miss you from the forum board. Please put yourself first.
    Cindy (mccindy72)

    ReplyDelete
  7. Hello
    I just found your blog by way of the brain tumor forum. I am very sorry to hear your news.

    ReplyDelete
  8. I hope you are doing ok. Our thoughts are with you.

    ReplyDelete
  9. Could someone link to his obituary or something? I know he blogged privately and I respect that. On the other hand, I feel heartbroken and want to know who he truly was.

    ReplyDelete
  10. This is truly sad. What a great writer. I hope his writings can be kept somehow. My mum is suffering from the same brain tumour and I have gained so much comfort in reading his blog.

    I hope he was surrounded by love.

    ReplyDelete
  11. He became a friend of mine. He told me his real name. I mourn the loss of this kind young man.

    ReplyDelete
  12. can anyone provide more color in terms of when he passed or his obituary? i'm just so very sorry -- he had the same tumor as my best friend which is how i came upon his blog. wishing his friends and family comfort and peace, always.

    ReplyDelete