Monday, January 24, 2011

Now back to the regular scheduled broadcast

Pushing aside for just a bit the enormity of Mr Ebert referring to my blog and words things and life go on.

Wash had a therapy session this morning and it was fairly good timing. We're both stressed as of late, and it's been coming out in harsh ways. I am getting more and more drained and exhausted and scared of everything that is to come- and perhaps sooner without the chemo, and he is finally moving towards accepting that his death will be sometime sooner than 60years. He also was able to finally say out loud today that he has been using me and not appreciating me enough. Or communicating his thanks to me.

Here's where the Aspie part kicks in. He sees the physical movements that he makes towards me, hugs and all, as his form of appreciation. I do not. My brain needs things to be explicit sometimes and all I truly crave is an honest out-loud (un provoked) "Thank you, Tashi. I wouldn't be here without you."

It's true. It's also the hardest thing I have ever done. It's being a wife to him, defending his independence, and at the same time I'm the mom who has to remind him to shower, and eat, and clean up instead of playing all the time.
That's what he has been doing lately, just trying over and over to play. I wonder if that is truly what he wants from the end of his life, memories of building Lego skyscrapers? This is what we discussed. He wrote some notes and I will be trying to make sure he actually does take the time to think about today.

He's been limited, and I feel so guilty for that. It's my failing somehow in my head that he is dying AND poor and young. I can't make him older and I can't cure GBM, no matter my own intelligence. For a year on top he's been fighting chemo and cancer and trying to stay alive and instead of being able to have him do whatever he pleased, we were limited by money. By my lack of funds.
I have been in school or working since I was 16. Wash managed to get two AA degrees under his belt and almost graduated an Architect before he got sick. I don't know what to do with time and funds. I don't know if he yet has decided what he wants to do, to be, to live, before he dies.

We wanted a little slice of our own "normal". He was going to be an Architect, working at a firm somewhere, before starting his own. I was going to keep up as an intern working in Forensic Osteology/ Pathology. He would graduate, so would I. We would move a few times. Find good jobs. Work for a while, pay off student loans from grad school. He would design our home, and I'd take some time off to have a kid, then go back to work and he would be the Stay At Home Dad; taking a year or two off and then working from home.
A life filled with books. And movies. And laughs. And loads of geek references. Our kid would fall at the playground and say "Ow, gorramit!"

I've been fighting for our survival for a year. He's been fighting to live. We both said good-bye to that "normal" future when he went in for brain surgery.

.......... I don't know what to do with our life now.

His first MRI since he stopped chemo is tomorrow. He's terrified. So am I.

When everything else falls through, we always have each other.


  1. Oh Tashi, I am so sorry. I wish I could help. I haven' seen you since grade school. My daughter Sarah went to grade school with you. She sent me your blog and the New Times Article. I'll donate and also send you love and light. I am so sorry this happened to you and your love.

  2. I am going through something similar, m husband is a trooper, can he call you. I can't talk coherently anymore.

  3. I am thinking of you.

    I have no words.


  4. You should check out It's a blog written by Kate Baker, sister to Kage Baker, who wrote The Company novels. (If you haven't read any of The Company books, find them! There are a few (legally) free short stories floating around out there to get a taste of her work.) Kage died of cancer about a year ago. While Kate and Kage didn't have the Financial and Bureaucratic Black Pit of Doom and Hell that you've had to go through (not so far as I know, anyway), she still sounds like someone you could connect with. For all of our well-wishes and sympathy, so many of us can't really understand how you feel. Kate seems pretty responsive to blog readers; maybe she can help you figure out how to go forward with your life, now and after.

  5. Sounds kinda like both of you are grieving independently and at different stages.

    You're still mourning the loss of your dream life together, and now you're both having to give up your crazy life with cancer and chemo. Of course you feel out of synch - the situation is progressing faster than you can adapt to it. It's going to be very weird feeling when it's all over and you're not the caretaker any more.

    BTW, forget the Lego part. Wash's building skyscrapers! What d'ya expect? He's an architect. He has a whole career's worth of design projects to finish in the next few weeks. Just like you need to be told out-loud, it might be really important to tell him out-loud what a brilliant architect he is.

  6. Tashi: I get where you are coming from, althought I know not where you are going to.

    Yes, Live. Just live. And thank YOU, because you have taught me, since the first time I laid my eyes on you in the hospital hallway on that awful, awful day a bit over a year ago, what it means to live. To live through it all, the hard, the easy, the funny, the sad. The anger and the love, too.

    I love you both, and I hope you are both able to live with us in March, when we all go into another dimension.