Wednesday, November 16, 2011


I have not been wanting to write lately. More emotions in me than real articulate thoughts.

It is beyond hard to find let alone have a voice. I feel like I've been pretty silent for years and now when I'm told to speak, and speak up, it comes back at me as being "selfish" and "whining". I am genuinely confused.

I'm scared. I'm scared mostly for the future for all the uncertainties. I'm scared of being put in a situation with no reference and expected to know where to go and what to do. I'm so mad lately as well, that life and our future is so gorram unfair.
We had two wonderful days of Hope, and then weeks of waiting for bad news we both know is coming. Brain cancer, two brain surgeries, a year of chemo, and too much bad personal news in 2 years.
It's just so much hardship and disappointment and unfairness, topped over and over.

It seems like I'm being told it's wrong to feel upset at the fucking unfairness. I just wonder when it will end? What if any point is there to keep going, to keep trying when it never works?

It's a hard day, and one with setbacks.

I've taken him back around to his follow-up doctor visits and though it still seems to be in the "not a brain tumor" category, there is still something off. His doctor thinks he is still having some kind of seizures, I guess ones that are just in his frontal lobe- his body does not seem to be as affected, but his emotions are just... uncontrolled. So next on Wash's to do list is get an EEG done (he may have to have more than one but I'm not telling/reminding him of it.) and a 'pressure' test to check the inside of his head and make sure his CSF is not too high. He will then see an Epileptologist (someone specializing in Epilepsy) and they can decide to change his anti-seizure meds, or perhaps put him back on low dose steroids. Not sure what yet, but he's on the right path to get help now.
Sadly though, this was I guess not the news Wash was wanting or expecting. I think he believed he would be told he was "fine".
He's not.

I am just tired. Physically and emotionally. Happiness seems to me, seems not to be.


  1. #1) I'm relieved that Wash is on the right (Medical) path TO get help now. That----(i.e., in and of itself)----will at least be a concrete start in finding OUT what's maybe causing his labile emotions, you know.

    #2) Just from my own personal and professional experience, I have *lots* of stories, Tashi, about people who've very SANCTIMONIOUSLY said to me and/or to my friends............ (i.e., after assorted, legitimately bad and/or genuinely unfair things had happened in our lives)............ "Well, I just don't know WHY you're so upset: you really shouldn't FEEL that way, you know!!"

    Yet----*Y.E.T.*!!----when those exact same U.N.E.M.P.A.T.H.E.T.I.C. people............ (who had never experienced, or been in, the same situations as either me and/or my friends had)............ then had the same-damn-things happen to THEM............ well, then they sure changed their (very preconceived) notions fast about how upset THEY felt!! (*Ugh*!! Double-*Ugh*!!)

    We all find out, (sooner-or-later), that Life is NOT fair; and, (as we age), we learn HOW to emotionally handle Life's inherent unfairness better. Those who THEMSELVES have never, at all, experienced our (own specific) types *O.F.* unfairness, (i.e., like having a 27-year-old husband with brain cancer)............ yet then very superciliously "pooh-pooh" US, however, for being upset about the specific types of unfairness present in our OWN lives............ well, I have VERY UNCOMPLIMENTARY words for astonishingly-unempathetic people like that, you know.

    #3) The very wisest among us say that *Empathy* really is the most important emotion, (i.e., even before love).

    I wish that I could just "turn-up" an Empathy Button............ ON select individuals (for you) in your life, Tashi!!

  2. You are not whining. You are not saying anything except a rather mild version of what your circumstances would make just about anyone say. Your use of this blog as a bit of a vent seems like a pretty good idea to me.

    I am mostly glad to see that you are still able to have some (not nearly as many as you deserve) good times. I only hope you can keep on finding more.

    You are amazingly strong and generous. That comes through clearly from your writing. Just be sure to do what you need to do to take care of yourself. You can't take care of someone else if you don't preserve your own strength.

    (from a mom, grandmother & low grade brain cancer survivor)

  3. Sending you MANY hugs. All I can say is..... I understand