Words Like Locusts Flew From Her Fingers

Breast Cancer Bullies

In addition to raising millions of dollars a year for breast cancer research, fundraising giant Susan G. Komen for the Cure has a lesser-known mission that eats up donor funds: patrolling the waters for other charities and events around the country that use any variation of “for the cure” in their names.

via Susan G. Komen Foundation Elbows Out Charities Over Use Of The Word Cure.

My friend Jodie, who raises money for the American Cancer Society, sent me this link after she read my last blog post. It’s definitely worth reading, so please do so.

I was just thinking about SGKF this afternoon… thinking about all the “extra” money they must have laying around to provide all the free crap they do to breast cancer patients: the water bottles and scarves and books and superfluous “navigators”. What I was thinking is that this is money that could be given to people researching other kinds of cancer.

I know it’s kind of ridiculous to get into a pissing match about what kind of cancer deserves research dollars the most. Breast cancer is bad — no doubt about it — and it kills a lot of women. However, as my friend Jim pointed out on Facebook, it’s not the number one killer of women and it’s not even the number one cancer killer of women.

I saw Susan G. Komen’s sister (she who founded the foundation) on TV once and I was impressed with her. She started the foundation from pretty much nothing and turned it into a mega-thing mostly through her own refusal to quit. It seems to me, though, that she needs to reevaluate what she really wants from this thing.

So It Goes

Yeah, so… once again, the words haven’t been flying off like locusts. It’s getting cold out. Maybe they’re hibernating. Or something.

Actually, I suspect that a large part of my relative lack of communication is that there’s a whole lot of “different day, same old shit” going on in my life lately. Remember all that “good week/bad week” business from a month or so ago? These days they’re all pretty much “blah”. The bad weeks (week one of each chemo cycle) haven’t seemed as bad as they used to, but the good weeks (week two of each cycle) don’t seem significantly better, either. It’s all just one long gray stretch of mild nausea, mild headaches, tingling fingers and toes, everything tasting weird or not tasting much at all, and occasional diarrhea. Oh, and fatigue. Lots and lots of fatigue. And did I mention that my hair is now falling out? I’d read that thinning hair was a possible side effect. As usual, I thought I’d somehow be exempt. It’s not bad enough that I’d shave my head at this point, but it may soon reach a point where I start wearing scarves to kinda cover up the places where my scalp is starting to show through. Actually, I’m cool with that. Scarves and hats and such can be good.

Whatever. So… that’s why no blog entries. It’s just one blah-blah plodding day after another lately.

Oh, I do have some exciting news. My CEA tumor marker level is now up to 167. Yes, that’s right. It has quadrupled in one month’s time. Not the sort of result you want to see when you’re actively getting chemotherapy. It’s possible that it’s just due to extreme inflammation in my digestive tract due to the chemo. I’ve got a CT scan scheduled for this coming Tuesday that will be helpful in revealing exactly what’s going on inside me.

I’ve got a feeling more surgery — which was planned anyway — may be happening sooner rather than later.

Oh, and since I’m in a real bitching and complaining kind of mood: Let me just say that I’m getting REALLY SICK AND TIRED of all the breast cancer pink ribbon crap everywhere. All these commercials: eat our yogurt and we’ll give money to breast cancer research, buy our cleaning product and we’ll give money to breast cancer research, shop at our store and we’ll give money to breast cancer research… Look, I’m very happy for everyone who has breast cancer (like my good friend Carol) who has benefited from all of this money, but there are a whole bunch of other kinds of cancer and people with those cancers — especially people with rare cancers like mine — who feel a little bit like they’ve been sucker punched with all this rah-rah-breast-cancer business.

When Carol first started treatment for her breast cancer, she got all kinds of free stuff: a pink water bottle, head scarves, books, and not one, but TWO, “cancer navigators”. (The “navigator” is a special nurse who helps guide the patient through their treatment.)

When you get pseudomyxoma peritonei (PMP), you get nothing. Nothing, that is, except a lot of blank stares from people (even from medical personnel) who’ve never heard of your disease and really have no clue what it is or how it’s treated. There are very few general cancer surgeons in this country who recognize PMP when they see it. If you don’t happen to have the good luck of being operated on by one of them, you’re very likely going to be treated like a colon cancer patient — which isn’t really going to help you very much. It’s only my good luck, and — yes, my ability to do effective online research — that’s given me the chance I’ve got for beating this thing.

Some days, though, I really wish I had my own “cancer navigator”.

How Orchestras Work

I’ve written a couple of times about how wonderful The Great Courses from The Teaching Company are — here and here, if you’re interested.

Well, I found out last night at orchestra rehearsal that The Teaching Company is preparing a new course all about how orchestras work and our group, the Manassas Symphony Orchestra, is going to be the featured group for the course. In January, The Teaching Company will be filming us during a full day’s worth of rehearsal and then a performance.

This is hugely exciting! Not only is it a wonderful opportunity for the orchestra (they’re paying us and the exposure will be great), but as a long-time fan of the The Teaching Company’s courses, I’m thrilled that I’ll be IN one of them!

My understanding is that filming is going to take place in early January. If it’s at all possible, I’m going to schedule my upcoming surgery around this so I can participate.

I Hate That I Was So Right About This

Md. woman charged in Target parking lot stabbing – Crime Scene – The Washington Post.

Six years ago I blogged about Antoinette Starks and her likely future. You can read what I wrote here:

The Results of Deinstitutionalization

Although Ms Starks did spend time in a psychiatric facility after her arrest in 2005, she was recently released — undoubtedly quit taking whatever medications they’d put her on — and went right back to acting out her dangerously psychotic thoughts.

There is no cure for the kind of paranoid schizophrenia Ms Starks has. She needs to be permanently institutionalized. Will our legal system finally get it right this time?

Eaten by Langoliers

It kind of blows my mind that it’s already October 12th. Where the hell did September go? In our house whenever someone asks “Where did the time go?” We always answer, “The Langoliers ate it.” (We’re big Stephen King fans at our house.) Well, the Langoliers really chomped down on the last month and a half because I don’t remember much of it going by.

I had chemo a week ago Monday and I’ve been having a surprisingly good time of it since then. “Bad week” was barely bad. I didn’t have any break-through nausea at all and what diarrhea I had was easily controlled. I feel fatigued and my hair is falling out, but other than that I feel pretty okay. Not great — but not bad, either.

The thing with my hair…sigh. It’s definitely thinning. Every time I brush my hair, I have a much bigger clump than usual to clean out of the brush. Also, it’s just falling out all over me pretty much all the time now. I don’t have any bare patches or anything like that, but it’s thinner and looks like of scraggly. My kind of chemo isn’t supposed to make all my hair fall out — but it’s not uncommon for this level of hair loss, so… I guess, as usual, I thought I might somehow be exempt from this side effect.

This week, “good week” has been better than usual too. Though, as I said before, I am fatigued and have very little energy for doing things.

What else is happening in my life that might be noteworthy? Orchestra and flute choir rehearsals are going well. The little dog is as barky as ever. Life goes on pretty much as usual. My friend Carol has started radiation treatments for her breast cancer. Five days a week for 6 and a half weeks. Yikes. She says that, so far, it doesn’t hurt though, so… that’s good. I don’t know if I’ve mentioned that Carol and David (her husband, retired) and I get together a couple of times a week to watch episodes of The Sopranos on DVD. They’d never seen the series and I suggested that since we’re all going to be sitting around the house a lot, we might as well do something fun with part of the time. We’re at the end of Season 3 right now. Lots of good stuff coming up. (I’ve seen it all before.)

I’ve actually been spending a LOT of time watching television. Not so much regular broadcast stuff, but stuff on Hulu Plus or Netflix streaming. I re-watched all of “Enterprise” over the past few weeks. Yesterday I watched a documentary about the Amish (though I slept through part of it), another documentary about the Vatican, and part 1 of Ken Burns documentary about Prohibition. I watched all of the episodes of Breaking Bad on Netflix or on “Video on Demand” (great show) and I’m thinking about watching that Terra Nova show — though I have to admit it looks pretty stupid. If it is, I will not watch. I’ve got better options than to watch stupid TV shows. (Several more documentaries in my Netflix queue, for example.)

Anyway… I guess that’s about it from here. Still got cancer — my CEA level (a tumor marker) had doubled on my last test. Still doing chemo. I’ve got a CT scan scheduled for 10/25 and that ought to produce some interesting results.