(no subject)
Death Star Window

Happy Birthday to Wyn! I hope you have a great day and get to do something fabulously fun!

I'll try to catch up with everyone soon. I haven't posted here or caught up on fannish e-mails in ages!


(no subject)
Death Star Window
Happy Birthday to Wendy! I hope you have a great day.

I'll try to catch up with everyone soon.

Strange observation -- fandom and politics
Death Star Window
My apologies for not posting sooner, or including here an update with family and job stuff. It's been a hell of a few months, but we're hanging in there.

So I wanted a bit of fun escapism, so thought I'd ask you guys:

I've discovered over the last 20ish years in fandom that the most hard-core Rebel/Alliance types (and by hard-core, I mean those who frequently write and/or role play these characters to the exclusion or near-exclusion of the Sith and Imperials) tend, perhaps (or perhaps not) suprisingly, to be politically and morally conservative in real life. Now, granted, this is based on several dozen people I've met in person and online over the years -- and obviously, I don't know everyone in SW fandom.

By contrast, those I know who usually favor playing and/or writing the Imperials tend to be either very right-wing (militaristic or libertarian, often homophobic if they are men) or the total opposite (poly/bi/homosexual, liberal/socialistic/leftist/left-radical, especially the women). There's little to no in-between, but none of these folks, even the right-wing ones, would really qualify as centrist-conservatives the way the Rebel/Jedi players/writers usually do.

What is going on here? :) What do you think? Please discuss. :)

Happy Birthday, Ziggy!
Death Star Window
Happy Birthday to my dear friend Elegy for Ziggy!!!! I hope you have a great day!

Talk to you soon!

A bit of good news
Death Star Window

Much to my relief, I can finally announce today that Barb's blood work and CT scan of the strange lump in her neck reveal that she does not have cancer or a tumor, and not lymphoma. Yay!

Now, the doctors are still stumped as to what the strange lump under her windpipe can be, but it may be scar tissue left over from her tonsillectomy, or some other strange thing. More tests are in order, alas, but at least the really worst possibility has been ruled out. Given both her family's strong history of cancer and also her depressed immune system, it's a huge relief. We weren't being paranoid -- chronic fatigue syndrome patients are like 800 percent more likely to get lymphoma and brain tumors.

Thank god that's not the case right now.

I appreciate everyone's concern and well wishes. I hope life is treating everyone well!

And I'm going to see a friend of mine in NYC this weekend, which is exciting, because I love NYC and miss it terribly when I don't get to it on a regular basis (it's been far too long between trips)  and while we've stayed in touch since we bonded in 1989, we haven't hung out in person since the mid-1990s, when she re-settled in the Midwest and I (who am from the Midwest) was (and am) still living in the Eastern states!

I'm very excited - I just wish it hadn't been such a financially draining summer, so that I could play longer in NYC and eat some really great food there. Alas.

Something to look forward to.

And, I finally started weeding my garden, and managed to get about halfway finished. Woo hoo!

All for naught....
Death Star Window
Sadly, my mom-in-law equivalent, Carolyn, passed away in the nursing home Monday morning. Barb and I were with her at the end, and the rest of her family had been there until a few hours before she died, and left Barb alone in the situation, so I went back to be with them both, thank god, when she passed at 7 am.. She'd suffered a bad UTI on the heels of brain cancer, and then simply gave up, even though she was cancer-free at the end (they did a scan to make sure it had not suddenly returned despite chemo ...and radiation, which she had completed). She had had to go to the hospital for treatment of the bad UTI, and misinterpreted it as The End, and stopped eating and drinking for several days.

The UTI combined with bad hearing had made her unable to understand/retain what people were trying to tell her, so she gave up and stopped consuming anything until she was basically unresponsive, and then the Living Will kicked in and did the rest. It's tragic and infuriating, especially because she had a doctor whose attitude was basically, "She's going to die eventually anyway, so why not sooner rather than later." So, she starved to death. Personally, Barb and I would have violated the Living Will and risked the consequences. Who has sued/prosecuted someone for keeping a patient alive for a few days until she is back in her right mind? But we had no authority to do anything except watch her starve/dehydrate to death. We didn't even have Power of Attorney. No, that was assigned to her well-meaning, loving, but entirely too medically uneducated son.

Friends, if you and/or loved ones have a Living Will, make absolutely sure that your wording is specific. Because Carolyn had been diagnosed as terminal (brain cancer *will* return at some point, and the doctor had said she had maybe a year or two or perhaps more), even though she was not really at death's door, her Living Will took over once she was unconscious from the UTI and not consuming any liquids or sustenance or medication to treat the UTI. That meant that neither she nor even her son, her medical power of attorney, could overrule her decision made years ago not to have any IV fluids for nutrition or medication if she was in a terminal condition. Barb and I urged her and her son to change the paperwork, but no one did.

The more I know of Living Wills, the more I disapprove of them, for people cannot anticipate what may happen to them. She could never have predicted this turn of events. An IV would have kept her going until she had recovered from self-inflicted malnutrition and the UTI, period. People can only imagine, "Oh, if I'm dying anyway, I won't want to have my life prolonged" -- but Carolyn did. At 85, she still wanted that good year or so, and went through surgery, radiation, and chemo. She was not dying yet, and knew it and had done the hardest part to gain more time.

For nothing.

And now she is gone. Funeral is Friday. Please pray for her soul to have peace despite all this, and for me to find something positive toward which I can direct all my anger and horror, so that this will not all have been in vain.

The medical hell continues
Death Star Window
Update on Carolyn, my mother-in-law equivalent: She's not doing well, and is very depressed, not eating, getting weaker, etc. However, this could be at least partially due to the ongoing UTI. We found out that the nursing home staff wasn't coordinating properly, and that they had kept her unsanitized pessary inside her for weeks, even while they were treating her UTI. So, basically, they were doing the equivalent of giving anti-venom to someone while still letting the snake bite them. This went on for a week.

And when we originally started to insist that they check her for the UTI, by the way, the staff got very defensive, and when we asked neutrally whether we could make an appt. to meet with Carolyn's doctor, we were told that, "Federal law only mandates that patients be seen once a month." The assumption was already that we were trying to make trouble, and that the nurses had to be the gatekeepers for the doctor, and they were already nervous about litigiousness on our part. It's so demoralising -- and this is a woman with Medicare and private insurance, and cancer insurance to boot!

Anyway, thank you all for your ongoing prayers and good thoughts and support. Please keep them coming, and especially wishes to the universe that we can continue to be patient and hopeful, and helpful to Carolyn and other family members, and also with medical personnel who are overworked and underpaid.

But I riddle you all this, and perhaps it is a rhetorical question - why, oh, why, are we still fighting just to get some oversight and centralization of care? This is a problem we faced with my grandparents years ago -- different doctors for different problems -- and I keep reading about how this is allegedly changing for the better. But I don't see it. Who is supposed to monitor the total picture?

The problem is totally separate from the issue of "Obamacare;" as far as I can tell, the new legislation doesn't contain much about coordination, either. And when it was proposed that elderly patients be given all their options with realistic outcomes and staff to help provide for end-of-life needs, critics claimed that this was a "death panel" that was hoping to kill the elderly more quickly. So that bit of legislation, which might have been helpful to many, went into limbo....
And then, just to continue the rant a bit more here -- there's the issue of Barb's family's patriarchy. Barb and I know far more about the system and have had lots of first-hand experience with these challenges over the years (with Barb's CFS and with our parents' and grandparents' experiences, etc.), plus we have the research and cognitive skills to make us learn things fairly quickly and easily. However, none of this registers in this very old-fashioned and patriarchal family, in which the eldest son who lives fifteen minutes away from Carolyn was automatically given all powers of attorney.

One of our major challenges for years with every grandparental health crisis in this family is that the "boys" are automatically assumed to be competent/able/
knowledgeable/smarter while the "girls" are not. It's bad enough that the sons' wives, who could do much more visiting, checking up, etc. to spell the sons and us, aren't - they've been told for too many years now that they are not as valued. So, one of the awful ironies of this situation is that g-ma is reaping what she's sown now -- Barb is the ideal person to be PoA for medical and financial decisions, yet g-ma has refused all along to take us seriously. Yet now we are sometimes the only two who understand what's going on. Things would probably be just as frustratingly sexist for Barb's mom, if she were still living, but at least she would have more informal authority and equality to a degree. Our disadvantage is being considered "kids" by g-ma and these 60-something relatives, as well as being female.

Sigh. So, for instance, g-ma doesn't seem to be listening to us at all when we try to remind her that she still might go home once she gets stronger and recovers from the UTI, etc., because she's convinced (mistakenly) that her sons don't want her to and have decided to just put her away. She assumes Barb and I have no say-so in the matter, and that we don't know what we're talking about. That's part of her demoralization - she believes she's ceded control to her sons, and that they are doing what they please now. It's not true (or at least not totally so), but that's her perception. She keeps saying how she will never go home now, how the "bastards" -- sons?, doctors? --
won't let her. But it's paranoia combined with UTI and patriarchy.

God grant me strength not to scream at people in the next few days -- weeks? -- ahead.

Happy Independence Day!
Death Star Window
As many of you know, I'm not always a fan of my government and its policies, but I love the promise, the potential, of the values upon which the USA was founded. In that spirit, here are some inspiring quotes appropriate for Independence Day. Enjoy the holiday, all who observe it, and be safe!

  • "My hand trembles, but my heart does not." - Stephen Hopkins (as he signed the Declaration of Independence)
  • "This, then, is the state of the union: free and restless, growing and full of hope. So it was in the beginning. So it shall always be, while God is willing, and we are strong enough to keep the faith." ~Lyndon B. Johnson
  • "He that would make his own liberty secure, must guard even his enemy from opposition; for if he violates this duty he establishes a precedent that will reach himself." ~Thomas Paine
  • "Where liberty dwells, there is my country." ~ Benjamin Franklin
  • "Liberty is always dangerous, but it is the safest thing we have." ~ Harry Emerson Fosdick

a bit of good news!
One piece of good news to update my last update -- it turns out that one thing was kind of a false alarm. Carolyn is not currently bleeding in the brain -- she had been, scans show, right after surgery, but it's long since stopped, and the swelling is not as bad as they initially thought. This is what happens when doctors make guesses that get passed among family members *before* they do a new scan!!!!

So, the UTI and swelling are being treated and the doctors are cautiously optimistic that g-ma may recover some of her coherence quite soon as a result, and perhaps a great deal more of it over the next several weeks after ending radiation. We shall see. I will keep everyone posted, and thank you again for all your positive thoughts and prayers. Please keep them coming!

Trying not to let my emotions make me their bitch...
Please send prayers and good thoughts our way. As you probably already know from my previous posts, Barb's grandmother Carolyn, who is really our mother figure since Barb's mom's death (and my mom's death) years ago, was diagnosed with brain cancer several weeks ago. She survived surgery well and has gotten through most of her treatment with major ups and downs, but was suddenly felled by simultaneous brain bleeding, brain swelling, a bad UTI, and dangerously low sodium levels.

It's been a harrowing several weeks since the diagnosis in May, with repeated ups and downs, and I apologize for my lack of real communication about it; I'll try to update more frequently. Currently she's back in the hospital, and we're going back up to northern PA tonight or tomorrow.

God, I just want time to work on some academic stuff -- this has been so back and forth, up and down for weeks that the uncertainty and suspense are the worst parts.  My house (still) and my garden (again) are frustratingly messy and weedy and chaotic, and my cats are starved for play. Ugh.


Log in

No account? Create an account