I usually wait until I have had a chance to process before I publish a post. When I don’t, they tend to get written on my phone and look very eecummings-ish. They also feel a little more raw when I go back and revisit them later.
This one is being put together as an attempt to assist in the processing process. Hoping that stream of consciousness writing will maybe lend me some insight into whatever it is I am keeping from myself this time.
I often feel really isolated. The only adult I see most days is Honey and he is such an introvert (even with me) that many days I feel that I am here on my own. That I am biding time or am hanging in limbo, you know? Lately, Honey has been getting tired pretty easily and we really haven’t done all that much. I did join in on his regular Wednesday lunch date last week. It was nice to see another grown up. I think I may need to see more of them. Maybe even more often, too. And, perhaps, without Honey.
Sometimes I get so angry. Like super pissed angry.
I would say that I get mad — but my mom would correct me that dogs get mad, people get angry. Although I do think that as a definition of how I’ve been doing, perhaps mad (with all its crazy connotations) is just the right word.
When I start feeling down/frustrated/irritated/annoyed (even just a little bit) – I find myself getting all caught up in this ridiculous web of overwhelming emotions. As a natural extrovert – my most effective manner of coping is to talk out my concerns. However, for this to work, I need to have a listener available; an active listener would be best – sadly, I have found these to be in short supply as Kitty will only hang around for so much deep philosophical whining before he is done with me and Honey is non-responsive more often than not.
It’s almost funny, I have so much SpEd and AB counseling training that I automatically go into “I-feel” mode when I am out of sorts so as not to sound accusatory (which I don’t think is really that effective – especially if you’re talking with someone who has any kind of higher education). Well, Honey apparently listens to me, he says he hears me, but he doesn’t acknowledge me; which leaves me feeling unheard (see there’s that “I-feel” thing again) so then I restate my issues in new and easily understandable language – yet he still responds with a glassy-eyed look. And then my head explodes – all over the room like a 10 minute condition 1 typhoon. After that, I am just left feeling guilty and cranky and having to apologize – which I really don’t like at all.
You know what else really sucks? It really sucks that I feel as if it is my job to put on a good front and make other people feel less uncomfortable with our situation. All people can say when they find out about Honey’s cancer is,”Oh, I’m sorry,” and then they ask questions related to treatment procedures –> or they tell us about a doctor who is doing something-something-something that is totally not approved by the FDA but is the only thing that works against brain cancer and we need to google his name or call or whatever – and I know that this is all because they love us and want to help and don’t know what to say or do, but I already feel totally impotent and really, it just adds to the pile of shit that I am already trying to cope with.
This past weekend wasn’t a particularly good two days for me. I was/am still trying to make sense of our appointment with DrC and am less than impressed with the continuation of the hurry up and wait situation. And, I have not been sleeping well. Although I’d bet if I remembered to take my bedtime meds for fibro/pain management I would be sleeping much better… (don’t even go there –> I live in Texas, not California. Pain management is a whole ‘nother beast here)
So, I have been confused, scared, tired, frustrated, sore and did I mention tired and frustrated? Yeah, I have also been feeling particularly tired and frustrated. They’re such omnipresent feelings that they deserve to be mentioned twice. Oh – and before I forget, those behavior-personality changes Honey has been experiencing as an unpleasant side effect of the steroid that he’s been taking these past few weeks? Really not making things any easier.
I received a call from SuperNurse yesterday. She told me that she had to cancel Honey’s appointment with the neuro-surgeon that had been scheduled for today (good thing, because I was totally unaware that we were supposed to go down town today). Apparently, Dr. Lang can’t meet with Honey because he doesn’t have any surgery times available. She said she is going to set up an appointment with one of his cohorts and that we should keep an eye on our mymdanderson.com calendar. I asked her if that meant that Honey was a good candidate or if he had been accepted into the trial. Her response: “They need to review Honey’s medical records as of yet,” and that we would find out when we meet with the surgeon. Honey feels that this is an implied yes – that he is going to be accepted in the trial. I, on the other hand, still remember meeting with Dr Lang last July. He was the guy who told us we could not find a reputable surgeon to operate on my darling. You may remember me bitching about that in a previous post. So, anyway, I am holding out on getting myself all worked up until I actually hear that he is scheduled to go in for surgery.
Love you; hate not knowing what’s next