Friday, May 4, 2012

Looking for Bat Country

It's been a hard week of truths for me.

I've had some good long talks with Hospice, and some friends who have literally been in a similar situation with brain cancer.

I've been holding myself trying not to fall into a depression. Trying not to lose the functionality I still currently have. I feel so tired, so much of the time. A deep exhaustion.

2009 was the scared shit year.
2010 was the year of fighting, chemo, and insurance pains.
2011 was the plateau. Was the "holding pattern".
2012 has changed. The way things work, the way he thinks, changed.

He's not going for more chemo. He made it very clear a long time ago, he could not face that fight again. Losing so many days to chemo, sickness, fatigue; for something that wouldn't raise his Quality of Life.

But, that part is hard to focus on, even though I remember when it's now in my face. When the inevitable has started to really happen. As much as I appreciate you, Dear Readers, this is still a way for me to talk to myself, to preserve these thoughts. A record of Death.
I don't know how to tell the people who are not around him so often how he is. I don't have the words that dull the sting. I live it, every moment of the day; but telling the other people who love him and care; so much so it hurts them more to see him like he is than stay close.
I just don't know anymore; I don't know what he wants. It's so hard for him to really grasp a concept to be able to articulate his desires and needs now. My biggest worry and fear is he is no longer getting the comfort he wanted from living with me.
I am so tired, but so guilty that I'm not doing "more". I can't even begin to know what "more" even is, but I still feel like it's not enough for him. I'm not doing EVERYTHING I can to make it more "fair" for him.

I've cried a lot this week, perhaps more than in the past month combined. It's terrifying to feel like I'm really losing him again. I have flashbacks so often to 2009 and the summer and the tumor, and how scared, how perpetually frightened I was then. He wasn't working and my hours were part-time. Money was always a worry. We were fighting over stupid things and I just did not know why. He was withdrawn, angry. He was no longer laughing. It was dark. I remember our huge 4th of July fight. I remember wondering if, on the Thursday before we found the tumor, I would end up divorced before a year of marriage that know one even knew about?
All of that keeps coming back.

Some days he feels/remembers/thinks he is in a time around 2005-2009. He's vaguely aware time has passed, but it's such a hard concept for him; time.
It's so weird, and so painful to see his brilliant brain doing this to himself. He knows me, but not always who he is anymore.
He has not been my "husband" in a long time. He cannot even remember to say "I love you" to me daily. It hurts, but I try to keep the pain down, like a bruise. The scary part this time is not that we don't know what's going on. His medical team and I are fairly sure there's something going on again; most likely another tumor(s). Since he doesn't want "treatment" there's no point even checking right now though. Schrodinger's Tumor. Better to just not be imagining what is there; to be unawares, and he is.
There's the smallest kindness in that; I don't think he is very aware at all just how much has slipped away or that there might be a tumor. Well, I guess today he was talking to the SW and thought he was back in 2009 and knew he had a tumor, but didn't know it was removed.
He gets a lot of details confused.

I knew this time would be coming. I knew from the time he went into the ER and I saw his CT scan. I knew from the Oncologist, the Radiologist, the Neurologist, and the Hospice team.
I knew it when we would have talks about his wishes, and I knew it when I had to ask for the urn to be made.
But, facing the end, it's hard.

I know statistically if there's another tumor and he doesn't treat it will be a couple weeks to maybe 3-4 months.
It's hard to think past tomorrow, maybe a few days from now.

I keep feeling these conflicting portions of myself scream out that I'm both way too young to deal with this pain, this heartbreak, this loss, this responsibility, I also feel so so so old, so aged, so seasoned to certain ways of life and Death.

The Social Worker said it was nothing he felt I had to address today/tomorrow, but he'd read next week or help me write.
It's terrifying having to be so strong.
I'm thankful for the bit of local, physical support I do have, but I'm trying to be open and vocal about needing more.

Things and times I truly believe will only get harder from this point on.

I keep wishing I had my best friend, my husband with me to give me strength.

Terminal brain cancer in a 25, now 27 year old; it's unfathomable cruelty to watch.


  1. (hugs)
    lots and lots of them

  2. Sending as much peace and light as I possibly can. Luckily I'm in Tucson so it will reach you both quickly :)

  3. Oh, Tashi. I feel so helpless, on the other side of the world. I wish I lived nearby so I could drop in and help in some small way. But I can't. All I can do is send love and best wishes, and try to reassure you that you have successfully dealt with a lot of shit over the last couple of years, and you do have the strength to get through this stage.

    You are an amazing, strong, incredible woman.

    Thinking of you both every day.

  4. I'm so sorry to hear this. I'm new here- but I've been lurking for a bit. We went through glioblastoma with my father-in-law a few years ago. My husband and I had been married for almost 20 years at the time so we had a long history. It was a hard process even with him only being my FIL- I can't even imagine what you are going though. Hugs to you. I wish there was something I could say to make things better- but I know there isn't anything that can make that pain go away.

  5. I just arrived here via the regretsy post. In fact I haven't a clue what to say, really, as there is no way an outsider could ever begin to fathom what is going on in your life. Reckon all I can say is that you are not alone, for what it's worth. What a cosmic joke- you guys don't deserve any of this. From the other side of the globe, I'll be thinking of you.

  6. Courage, friend. From all of us to you. There are so many of use who watch and follow and wish we could be there from across the wired world. We love you both, though we've never met face to face. We're here for you, and you won't ever need to mince words with us. We care. I care.

  7. I second pretty much what everyone above has said. Lots of hugs and prayers and love to you and Wash. Though we could never be a substitute for Wash, I hope you can still draw some strength and comfort from us readers, and know that we do truly care about you both.

  8. #1) In addition to the almost Inexpressible Cruelty Of Cancer to Wash, your own very understandable fear and terror, Tashi............ constantly (and cruelly, too) throbs-on............ unabated.

    Some days Wash, as you've said, "feels/remembers/thinks he is in a time around 2005-2009"; so Wash (mentally/emotionally) is then at least in "in a place"----(albeit, of course, unwittingly)----where he can find some degree of Peace and Refuge, but you............ don't (mentally/emotionally) really have "a place" of your own for genuine Peace and Refuge............ except in the local, physical support you do have............ and in the thoughts/hearts/words of all your many Dear Readers.

    #2) Right now, although it might not feel that way to you, you are doing everything you CAN do for Wash............ i.e., there's nothing "more" you can do, i.e., than what you're already doing. From now-on-out, one of the most important things that you can personally (continue to) do is to............ lean on others............ articulate support you need............ and accept every single offer of help and/or kindness.

    When Wash has those (ever-decreasing) periods of time when he's genuinely "in the moment," one of the greatest comforts Wash----(as a man)----can receive from your being there and living with him is............ not necessarily your trying to "do more"............ but simply Wash's *knowing* (FROM you and from trusted others) that when he's gone............ you "Will Be Taken Care Of" by those who love you and by those who care about you.

    For men, no matter what their ages, who have loved much----(as Wash most, most-certainly has loved you, Tashi)----being honestly told that their spouse (or partner) "Will Be Taken Care Of" often means EVERYTHING to them............ when Life............ hasn't been "fair" TO them, at all, you know.

    #3) In the way (that we can) From Across The Miles, Jack and I are two----(whom Wash can count on)----to ensure that you "will be taken care of" afterwards, Tashi.


  9. You have my heartfelt sympathy. Mom was diagnosed in 1999, she died in 2001. Her progression was very different, in that the last year or so she was pretty much asleep. It is exhausting, it just sucks the marrow out of your bones.