m love, dw rose

tomorrow, I'm gone

All Done! All of my radiation have been finished. Sadly, they had another setback. I honestly wouldn't have beem bummed so much, except they made me go back come back to the hospital, and wouldn't let me leave for days.

After I had been here the full 17 days and endued many obscure
conservations, the hospitist on duty stopped my room this morning. He (Did I I mention he looked like Dr. Kildare?) was acting really nice about it, too. (Not everyone can say, "you're dying, and we love you.")

So, I tell B that this nice Dr seems to think I'm dying.
She tells me he's not god.
We agree he's not god, but damn I'd really like some sertanty about what he knows.

ooooooooooooooooooooooooooooooooooooooooo in other news, if is a really am going to be death this time, I plan to do some traveling. though that will/depend on me being strough euough. Please let meknow if you think you'd like come to Seattle to see me; or for me to come to your town. If you'r cool with a visit.

Sweet lettermade to go my grave

Now let's see how long I can go from mentioning dead.
m love, dw rose

Too long don't read, or radiation is bad

Actually written approximately June 25, 2011

On June 15, I had my first radiation treatment, and everything seemed to be going well. I lay down on the sofa to read email for a bit. At 6:30, I had an excruciating headache. I attempted to eat dinner at 7, and took my steroid pill (protecting my brain from swelling after radiation) - but immediately vomited. It was a hellish night, with pain and vomiting.

This next part I only know because Brie told me. Apparently, I had trouble communicating overnight and we both got very little sleep until 9 a.m., when I finally dropped into a heavy sleep. Brie woke me at 1:30 p.m. to get ready to go to radiation, because we needed to leave at 2:00. She tells me I was disoriented, had trouble forming sentences, and unsteady. As we got ready to leave and then walked to the hospital, I became increasingly confused, and Brie was concerned about my speech slurring - she feared I'd had a stroke, though my speech cleared by the time we got to the hospital. Brie told the doctors what had happened and we were whisked up to urgent care, where they did a CT scan and gave me pain meds and fluids. The CT scan showed no stroke, no bleeding in the brain - the lesions had increased in size slightly, but that was it and didn't explain what was happening. The medical staff suspected it had been a complicated migraine, and my radiation oncologist agreed, reassuring Brie that radiation would not cause this to happen again. And we walked home from the hospital, feeling relieved but still a little nervous.

Thursday night was good. With additional drugs for pain and nausea, I was able to eat some dinner and go to bed and sleep well. Brie was relieved that I was coherent every time I woke up, which wasn't often, and we were both feeling pretty good about 8:30 in the morning, assuming I'd have radiation that day. But by 9:45, my head was pounding, and I tried to nap. When I woke up, Brie couldn't understand anything I was saying, and I kept returning to bed. Finally, Brie got me up at 12:45 to see if I would regain coherence before going to radiation, and I didn't. Instead, my inability to communicate was clearly distressing both of us, and then I started vomiting and we headed to urgent care, and we ended up at the hospital.

Brie was overwhelmed and called gattagrigia to come support her. Gattagrigia and her partner both came and provided emotional and practical support - at urgent care, and then later at the hospital. Brie was able to ride in the back of the ambulance with me, so John drove our car to the hospital and Gattagrigia drove theirs. It was already 7 when we got to the hospital, and they informed Brie they wouldn't do an MRI until morning. Meanwhile, they started fluids with some nutrition and gave me pain meds that apparently calmed me a bit.

Even on pain meds, I was still uncomprehending and unable to communicate. Gattagrigia and John stayed with me while Brie went home to take care of the cats and grab a few things to take to the hospital for what proved to be a long, worrisome night.

I was a little clearer by morning, but still didn't seem to have any idea where I was or what had happened. My family had been coming to town for the weekend anyway, so my mom and sister arrived pretty early in the day, followed by my other sister and a whole slew of family members.

There were a few hurdles, but eventually they did an MRI, which showed cancer progression that the CT scan hadn't shown. Over the past couple of months, the cancer had been spreading, with multiple mets in various areas of the brain - all small, but the cause of the nausea, pain, neck pain, leg tingling, and other symptoms that had plagued me since I went off chemo. Among other things, the meninges were involved, which is why my neck had been so stiff. The oncologists recommended proceeding with brain radiation to alleviate those symptoms and restore lucidity - Brie and my family readily agreed, but I was still unaware of any of this.

Happily, I regained lucidity late Saturday evening and was much clearer by Sunday morning - and I have been pretty much myself ever since, though it's the cranky version of myself because I've still had a lot of pain and nausea. And steroids make you cranky, too - and hungry!

I started radiation on Monday and I'm over halfway through the treatments now. Each day, I've been at least a 7 on the 1-10 pain scale, and as far down as a 2. Sometimes it gets better and worse multiple times, which makes it very unpredictable. If I have the energy, I've got to write about this hospital - because it's whacked out.

So far I have no certainty when I'm getting home. I assume I'll be here for the entire ten days of radiation, which would get me out of here on Weds or Thurs. It is unbelievable the amount of pain meds I've had - Toradol, Dilaudid, morphine, fentanyl patch, compazine, ondansetron,reglan, ativan, liquid Tylenol, oxycodone.
m love, dw rose


Had my trip, and it was lovely...except for the fact I was in pain 10-15 hours a day, and the pain kept wandering around, so I never knew what to expect the next morning. I *think* I'm glad we went; we really did see some beautiful sites, but I more than once can close to just flying home, and letting B decide whether to come with me, or just drive the car back alone. (I want to post pictures, but boy that seems like work. We'll see.)

Since I got back, I've had a few days to try to find normal, but tomorrow I start @#^#$% full brain radiation, which comes with a list of possible side-effects that could make me sick even if I wasn't already.

I'm currently taking so many meds I can't possibly keep track of them. I feel like I've been a pretty good toaster so far (don't talk to much about being sick, etc.), but I'm running out of good spirits, or something. In other words, if you ask me how I'm doing, there's a horrible chance you'll actually hear.

Y'all, though -- I hope you're all doing well.
m love, dw rose

Hey, you wanna help fight cancer?

I just learned about the Army of Women, a project of the Dr. Susan Love Research Foundation, funded by the Avon Foundation, to help recruit both healthy women and women with breast cancer for research studies that aim to learn more about how to prevent or curtail the disease, or how to ease survivors' post-treatment symptoms. (Men who have been diagnosed with breast cancer or who have close relatives with breast cancer can also sign up.)

Here's the deal. You sign up on their website (www.armyofwomen.org). All they need is your name, contact information, and age. Then you'll receive occasional emails about studies that are recruiting volunteers to participate. Participation in the studies is free -- and each message will list the criteria for eligibility (might be age, whether or not you've had cancer, where you live, that sort of thing). Some studies just ask you to complete a questionnaire; others require blood samples or breast tissue samples; a couple of the current studies involve sleep studies; each one is different. If you want to participate, you log in to the website and click Sign Me Up - they'll talk to you to make sure you really are a good match for the study, and then they'll connect you with the researchers.

You may never see a study that works for you, but even if that's the case, you may be able to pass the word on to someone who does match the criteria. And some of these studies may be the ones that lead to real progress in ending breast cancer and in improving quality of life for those who have or have had it. I think it's an amazing project. They're aiming for one million women, and it's already got close to 350,000 people participating.
Let's nudge that number up a little bit, eh?

m love, dw rose

Vay-Cay!!! Road Trip!1!

It has been more than a decade since B and I went on a vacation more than a long weekend, and this chemo break definitely calls for a Road Trip.

I have visited almost 40 states, but I've never seen any piece of the dry southwest, and I am asking for advice.

Currently we're planning 4,000 miles in a big circle:
* over to Eastern Washington (we're going to Maryhill and seeing the tiny Stonehenge)
* down through Idaho (any one know anything fun in/near Falls, or Pocatella?)
* Utah (Arches and Zion are definite -- anything else "must see" in Utah?)
* New Mexico for a few days (is Carlsbad worth the long drive? note: I have never seen a large cave of any sort)
* Arizona (Grand Canyon, hopefully without spending any money in the state)
* CA/Nevada (Scotty's Castle)
* CA (ride home fast up I-5 (though maybe stopping and seeing Morgan Dawn)).

I'm slightly considering: an 8-hour sidetrip to Yellowstone (which I've never seen), or a 10-hour side trip to Denver.

Advice? Must sees? Places to eat? Ladies and gents, bring it on!
m love, dw rose

State of me: mixed


The goal is to stay alive until they come up with a cure. There are only so many chemo regimes for someone with stage 4 triple neg, so I need each one to keep working as long as possible.

But this first round of chemo (first round? I've been on it for 10 months, solid!) has stopped working. The tiny silver lining: I finally get a chemo break while they're deciding what chemo to try next.

And man, I need the break. Fatigue sounds like such a whimpy-ass symptom at first, but now, when I can get out of breath cutting onions, or putting on tennis shoes, it's taken on real menace. I'm hoping a full month without poisons will make me stronger, or at least less whiny.

[fwiw: I got the diagnosis May 13th, last year. They told me then that the average life expectancy was 18 months. Ha. I'm going to pass that without even trying.]

(as usual for State of Me posts, I would love to hear from people, but I make no promises about answering.)
m love, dw rose

If you're writing h/c, I give you this for free...

So my hip just keeps getting worse (joy!), to the point that I can't cut my own toe nails on that foot. My partner now cuts my toe nails, just on that foot. She feels all awkward about it, and afraid she's going to cut off one of my toes, but she does it. Some days, when I'm at my stiffest, she puts on my sock on that foot. And (this gets her points in my non-existent heaven), some days, before bed, she rubs around and gets the sock fluff out from between my toes.

At least from where I'm sitting, that's romance with a capital R.


Currently I'm reading the new big three: Sherlock, Inception, H50; last year's cool things: White Collar, Dr Who, ST:Reboot; and a trio of old favorites: SGA, SPN/J2 and HP. Nine shows. That's not too much, right?

But something I've recently noticed is none of these wonderful shows are provoking much h/c in their fanworks.
m love, dw rose

Is anyone else still watching House?

Can you tell me why? Cuz I don't know why *I*'m watching it.

I can't remember the last time I liked any of the major characters. I want to write the writers and BEG them to stop hurting me. (And yes, I know I need to woman up, walk away and let my partner watch it alone. But I rather it just got good again, or even just not SO FUCKING BAD.)

Seriously -- I would be so grateful to someone who could conceptualize this season in a way that would make it make sense to me. Even if I hated the idea, I'd love to believe they have one, and haven't just gone insane.
m love, dw rose

Just watched "Taken"

The Liam Neeson movie?

Oh My God! I can't remember a clearer, more hideous obvious Marty Stu In My Life! Geez, beginning to end, I was continuously embarrassed for (the writer), Luc Besson. Poor guy -- no one understood how important his job was, how the world depended on him while he was away from his family, and how, if they'd just give him a second, he could fix all their problems and Save Their Lives!


Perfect distraction movie, though.

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