Archive for April, 2010

Apr 30 2010

SpinAThon is live!

Published by Reesa under me vs. cancer = I win, spinathon

You can check out the live fiber action at this link, or the main SpinAThon site for more detailed information and donation page.

Stay tuned for a bonus Callie post! Two in one week, in honor of the SpinAThon. I’ll also be randomly Twittering about the weekend as the whim strikes. Thanks for helping to keep it possible for me to keep writing!

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Apr 30 2010

SpinAThon about to spin!

Published by Reesa under me vs. cancer = I win, spinathon

SpinAThon starts tomorrow! We have 32.5 hours sponsored so far, which means we are definitely into our second day, which will be held at Andrea’s place in Round Rock, nicely bracketing Austin with the two days of our event. Saturday Andrea will be spinning on webcam starting at midnight until 8am, when volunteer Emily takes over so Andrea can prep for Yarnorama! They open at 11am, which is when our Kentucky volunteers Grinny Possum will begin their webcam spinning while Andrea is on site taking massive amounts of pics of the Yarnorama participants. (We couldn’t get consistent streaming webcam out at the Paige shop so we’ll post the still pics and recorded video instead.) Yarnorama will be spinning and knitting from 11 am until they tire out, at which point Andrea returns home and with hopefully enough other volunteers for nap breaks, spins and knits until the sponsorships run out on Sunday!

Just a few more sponsorships will put us into the time volunteered by Steven Brust, a local bestselling fantasy author. We hope to have Steven Brust putting in an appearance on May 2nd for a few hours in the early afternoon, he’ll be playing tunes to entertain our spinners and knitters, and will have a few of his books on hand for sale and signing or personalizing. He’ll be there from about 1pm until he tires out, and we currently have sponsorships through 8:30 Sunday morning so only a few more hours needed! If you’re a local fan of Steve’s you can show up even if you don’t donate, but sponsoring even a few minutes will help ensure your favorite local author will be there! He loves conversing with his fans and having an audience for his songs, so let’s make his time worth it!

And yes, we will be taking donations even after the event begins, right up until we run out of pledged spinning time. If you’ve been waiting until the last minute to pledge, now is the time! I plan to show up for at least a part of both days, though my Sunday will sadly not be overlapping Steve’s much at all (I’ll be on-site for a couple of the Sunday morning hours but have another scheduled event for lunch and early afternoon; Saturday, I’ll likely be attending Yarnorama with my mother, who will be in town and donating an art piece to the silent auction happening soon after SpinAThon.) We also still have room for more volunteer knitters and spinners, especially on Saturday night and Sunday; even an hour or two helps our main volunteers get naps!

Thanks for everyone for helping out with this Good Samaritan event!

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Apr 29 2010

Out-of-time interlude

Published by Reesa under Writing, blwio, callie, momentum

(I’m a terrible tease, since this isn’t the section I’ve been working on, but it’s better than nothing at all…right?)

***

“Inari, please wake up. I’ve talked to my dads all day but they still won’t move. Ember neither. I’ve tried and tried, but no one will wake up and I don’t know what to do!”

*

“Inari, please wake up! I’m so scared.”

*

“Inari, please wake up. I saw people outside and tried to get them to help but I don’t know if they will and then I woke up after sleeping and there was this key under my pillow and I don’t know how it got there or where it goes.”

*

“Inari, please! Namah needs you, she might be in trouble.”

When Iris awakened from crying herself to sleep, with a hand finally on her shoulder and shaking her, she burst into tears. At least twenty minutes passed before Inari could go about the business of waking the others — or at least Namah — while Iris ran to get the key from where she had hidden it.

***

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Apr 22 2010

Cancer Chronicles: ultrasound and draining

Published by Reesa under health, me vs. cancer = I win

(continued from this entry)

Our appointment is with the Woman’s Imaging Center. It’s easy here to have stereotypical thoughts about how we are receiving better and more compassionate service on the giant boob issue from a center oriented specifically to women’s needs. They try to stop Nathan from coming back with me, saying that he isn’t allowed in the procedure room, but I speak up and say that we have some medical advocacy concerns and he’s here to help me get some questions answered before the procedure. The nurse is receptive to this change, saying that he can come back as long as I’m in the prep room but he still has to wait up front while I’m getting the actual procedure done. We agree, pending our concerns being adequately addressed.

This is the first time in the cancer experience, but not the last, where I observe the reaction I will get from each subsequent female in the medical field with whom I interact up through the surgery: a particular facial expression of sympathetic horror, sort of a combination of “you poor thing” and “thank the gods that’s not me!”, that flashes across each female face I will meet for the next few weeks. I amuse myself imagining that they’re having a similar stab of empathetic breast pain when looking at my gigantic zomboob, as men do when they flinch at seeing one of those “funniest home videos” where some poor gent gets smacked in the testicles by a vigorous pet, projectile, or person.

The nurse does a very good job reassuring us that they will NOT be smashing the boob in a mammogram machine, that they understand I’m about to explode internally with fluid and they will drain as much as they can during the biopsy, that the pain is extreme and they will be using as much local as they need to so I don’t feel the biopsy or draining. She tells us she’s conveyed to the radiologist that my tumor is the size of her head (she has a smallish head, so this is pretty much true) and so he’s aware of the (heh) magnitude of the situation. She also mentions that she’s setting up the room with extra supplies of drains, lidocaine, syringes, and everything else because she thinks it’s too large for just one set to deal with. They spend a few minutes finding drain tubes and needles long enough to deal with the size of the mass.

The previous ultrasound indicated, and this one confirms, that the size of whatever is going on inside is around 13 cm across. For perspective, a breast mass counts as “large” when it’s over 2.5 cm or so. Your cervix is considered dilated enough to pass a baby when you’re at 10 cm. It won’t be the last time the words “holy shit!” are uttered. Not even today, as you’ll soon learn…

I get Nathan to take a couple of pictures of me pre-drained, and we wait nervously until they are finally set up and ready. He heads back to the waiting room and I go into the procedure room. The nice nurse starts getting the tray ready, making small talk about my recent experiences while we wait for the radiologist. He comes in a minute later, and nearly the first thing he says is “The nurse said it was as big as her head, I didn’t realize she wasn’t exaggerating!” We chuckle, the nurse says some version of “I told you so”, and the radiologist adds, “she said it was big, she should have said it was a Texas-sized tumor!”

More chuckling, the radiologist conveys genuine concern along with professional efficiency as he starts telling the nurse which prep to start. It becomes evident quickly that more hands are needed, so we disrupt the rest of the center’s afternoon schedule by tying up two nurses and a radiologist for over two hours as they call in an extra nurse to help. We end up going through three times the normal amount of supplies for such a procedure. At the beginning I ask if they will be measuring the fluid as they take it off. The radiologist starts off replying “There’s no real need to…”, whereas both nurses reply “Oh yes, we’re really interested to know how much!” I really like these nurses.

They drain off 550mL of fluid from the area before proceeding with the core biopsy. Combined with the fluid that was removed the previous Friday for testing, I’ve now had 2/3 of a liter of fluid removed from my left breast over five days’ time.

“Holy shit!” will be a very useful, simple phrase we use frequently over the next several weeks. Feel free to employ it here. (For those of you with distaste for cursing, consider “you poor thing”, a Southernism I’ve heard many times recently — starting with these nurses.)

And now, a Public Service Announcement: biopsies are NOISY. This was a vital piece of information everyone managed to leave out of the pre-biopsy informational process, and it was startling enough at the time that I feel it’s worth informing others about. I was a little surprised I didn’t jerk away and screw up the sample when he first used it, it sounds like a small and fairly-loud-for-its-size pneumatic drill (which, essentially, it is, go figure). They make several drilling sounds before they’re done. The radiologist explains afterward that he’s inserting a small titanium place marker under the skin to indicate on future scans and xrays where he took the sample from. We joke about my first step towards my bionic woman status as he carefully places it so it will actually be lodged at the edge of the area rather than falling into the open fluid region and floating somewhere else. (Um, ew.) He says it’ll be there for the rest of my life; neither of us know then that only 8 days later he’ll be a liar on that.

There’s no perceptual tactile difference while I’m laying on the table, but when I sit up after they are finished I can feel some temporary pain and pressure relief from the removal of so much fluid. I no longer feel so immediately like I am about to explode. They have yet another person (empathetically horrified look + “you poor thing!”) come in to assist the first two nurses with the clean-up. I find out from Nathan that the rescheduling delays caused by my involved procedure pissed off only a family of very upper-class conservative-looking folk who were obviously very unused to being told “no” or forced to wait on anything. (They also assumed during small talk that Nathan was there with his mother, and shut up fast when he corrected them.) Haha, my lower-class Texas-sized tumor has just as much right to treatment as your fancy preserved boobs, here in the Woman’s Imaging Center.

We go home to await the results, supposedly available within 48 hours, and I enter what I will later call Vigil Week.

(to be continued)

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Apr 21 2010

Cancer Chronicles: recovery lessons, a sampling so far

Published by Reesa under health, me vs. cancer = I win

For your amusement and edification, and in honor of the 1-month anniversary of my life-saving surgery, several of the often-contradictory lessons that come up on a daily basis are included here. (All conditions are for this time and state and person, healing brings daily changes so expect frequent shifts over time.)

The more sleep, rest, downtime, the better, in the first 2-3 weeks.

I do best eating a light meal within an hour of awakening.

I have issues if I go longer than about 7 hours without eating, even if I’m sleeping. If I sleep for longer than that without getting up to at least snack, my blood sugar levels are more difficult to re-balance through the following day.

Eating frequently is better; smaller meals and snacks every 2-4 hours seems to be optimal. (This was actually true for me before the cancer as well, though I didn’t always follow it back then.)

I do best on energy levels if I stretch or move around a bit within two hours of awakening.

I often don’t have good enough energy levels first thing after awakening to accomplish without help the things that would be optimal in the morning — like eating, stretching, or pain meds.

I’m down to averaging around 4 pain pills a day (less than half of either pre-surgery or immediately post-surgery dose levels). I do best if I take one immediately after awakening; otherwise, I end up playing pain-med catch-up all day and usually have to take more as a result.

Due to early morning general bleh-ness, I often forget without external reminder to take my first pain pill when it would be optimal.

Gravity sucks. Sitting up from a prone position hurts, just through the repositioning of how the atmosphere is pressing down on various tender bits.

The first few hours of the day are generally the most painful regardless of meds; second runner-up are the last couple of hours of the day, when whatever flexibility and ease of movement I’ve achieved that day starts stiffening up again.

Remaining in a prone position for too long is terrible for my hips. Again, can’t sleep for longer than 7-8 hours at a time before i have to get up and move and stretch a little before more rest happens.

Afternoon naps seem to be non-optional about 90% of the days so far.

Doctor’s appointments will generally be scheduled at the most inconvenient times for sleep schedules or other patient-in-recovery considerations — such as schedules for eating, mobility, and pain meds.

Anyone medical calling who has “lost” Nathan’s paperwork for his medical power of attorney for me is likely a financial person or bill collector attempting to take undue advantage of the sick person.

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Apr 19 2010

SpinAThon signal boost!

Andrea and others are organizing a marathon fiber-spinning-and-knitting event called SpinAThon to help raise funds for our copious medical expenses incurred from the recent breast cancer adventure. It’s happening May 1st (and hopefully May 2nd as well, if we get enough donations!) in the Austin area and occasionally elsewhere — and we’re broadcasting the volunteer spinners and knitters on internet-streaming webcam so you can watch the progress in your own home!

How can you help? Well, sponsoring several minutes (or hours) of spinning will most definitely help us, both in the raising of funds and in making SpinAThon a more noticeable event. (Last I checked we were already up to 18 hours; our goal is to reach 48 hours or more.) As little as $5.00 will sponsor 5 minutes of spinning, and larger donations will sponsor fiber time at the same $1 per minute rate. Visit the main SpinAThon page and click the “Donate” button there (found just above the pictures of me) if you want to jump directly to the donating part.

If you can’t donate funds but still want to help, here are a few ways:

Are you local to Austin, TX or not local but with a webcam, and do you spin or knit? Consider joining the volunteer spinners and knitters practicing their craft for the event. Contact Andrea (naturalobsessions@gmail.com) to get more details on how to sign up for this and when to schedule your spinning time. She can also help you get set up with the free streaming webcam service several spinners are using for the SpinAThon.

If you don’t knit or spin, and can’t afford to donate at this time, consider linking to this post or to the SpinAThon website itself and spreading the word. The more people who know about this, the more likely we are to reach our goals and create an awesome event for everyone!

And of course, the days of the SpinAThon itself, you can watch the progress of the volunteers as they create the novel sport of endurance fibercraft on Live (Really)Reality (Internet)TV! Any questions not answered here? Check out our SpinAThon FAQ (90% written by yours truly) or contact Andrea directly with your question. You can also leave questions in the comments on this post or over on the Reesa Brown Fan Page where it’s also linked.

Thanks to everyone for all the help that continues to come in, it makes a positive difference in my recovery!

5 responses so far

Apr 18 2010

Return of the links!

If anyone in the Austin-ish local area wants to see this next one, let me know! I go out to College Station about once a week to check on my business there, we could easily turn one of those trips into a sf exhibit roadtrip. Not too many people know that the Cushing Library extension of the Texas A&M library system has the second-largest collection of science fiction-related private author papers and other rare items in the country. Here’s the current exhibit on display until January 2011.

I’ll be listing some of the cancer resources that have been useful to us, marginally or more, as we progress through cancer and recovery. The obvious first one to start with is the American Cancer Society, an umbrella organization that has many local chapters and handles information about many different types of cancer, including breast cancer.

And for a fun wrap-up link, gamers can enjoy this Nintendo emulator site, and play again all those games that sucked away so many productive hours in your youth.

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Apr 15 2010

Cancer Chronicles: chemical conundrums

I was idly thinking about how it might be nice to have a monthly pedicure routine start up with a friend or two, as part of the “reclaiming the body beautiful” process (also the foot bath and massage chair would be genuinely therapeutic for where I’m at in recovery), when I was struck by another set of thoughts.

Breast cancer is a “modern era” illness, showing up in vastly higher percentages in developed, industrialized nations. The best guess so far as to why is a genetic predisposed tendency towards it plus exposure to chemical and other environmental toxins in the environment.

I am strongly disinclined to become the sort of paranoid that worries and obsesses over every chemical exposure in my environment. I live in a modern, industrialized nation. I eat food purchased at a supermarket. I live in a home where cleaning products are used at least biweekly. The life changes necessary to remove most or all of those contaminants would be extreme and not very sustainable given my current needs — not to mention that I can go as far out to the country and grow all my own food as I want, and I still have to breathe the chemically-contaminated air in the atmosphere, worry about the water table, and etc and so on.

On the other hand, I don’t have a problem at all examining my life and minimizing my exposure to unnecessary chemical and other potential contaminants in an effort to make it as easy as possible for my immune system to stay on top of preventing any future problems. And I realized that you can certainly absorb things through your nailbeds, and that nail polish is pretty much all chemicals.

So what do the readers think? Is this the sort of minimal exposure, only happens every couple of months sort of chemical question to not worry about? Or are painted toes the type of “not worth the risk” simple thing to eliminate from my life since it wasn’t a hugely established routine anyway? Are there less-toxic nail polish options that actually work similarly? (If the “more natural” polish only stays on a couple of days it’s not worth the effort involved, compared to a month or more of the traditional polish’s duration.) More general thoughts?

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Apr 09 2010

Cancer Chronicles: second part of brief overview

Published by Reesa under health, me vs. cancer = I win

(continued from this entry) We made the appointment that day with the specialist for a time early the following week (the 9th of March), since we weren’t inclined to move slowly now that we knew it was something quite strange and possibly concerning.

The specialist we saw on the 9th only did a palpation of both breasts on the initial visit, noting the lump on the right side and asking me about it. I said I’d noticed that one there for six weeks or so, but it wasn’t hurting like the one on the left side was. He expressed strong concern about the masses being cancer, which we were initially irritated about because he seemed to be ignoring for a potential larger issue the very obvious infection signs from which I was acutely suffering. Overall he was one of the stereotypical surgeons with poor patient empathy, and also seemed quite concerned about working with self-pay patients. His continuing to focus on the money issues combined with his difficulty in interacting with patients actively involved in their own self-care made us pretty sure that regardless of what he said the problem was, we’d want a second opinion before taking action.

He put us in touch that day with a cancer advocate associated with the hospital; she was nice enough but again assuming the diagnosis was already present when I hadn’t even had an ultrasound yet. (We called them later but found out we couldn’t move through the system until we had an official diagnosis, which we couldn’t get without more information.) We scheduled the ultrasound but then un-scheduled it when we realized we weren’t going to be doing the majority of our visits through this surgeon’s office. We got a preliminary ultrasound affordably from a local radiology chain the next day. Nevertheless, we went back in to the same specialist that Friday the 12th to have the swollen area drained and samples taken to test.

They removed 2 syringes of fluid, over 100 mL. The first syringe was a clear yellow fluid that the surgeon said looked like cyst fluid. The second syringe he pulled was tinged with blood. This was one of the not-good signs, bloody fluid is often a sign of malignancy. After that he decided to send off what he had for testing and not to drain any more fluid until more testing was completed. I was quite displeased with this decision since I was in massive amounts of pain from the pressure of the fluid under the skin even with pain medication. (It was also a Friday afternoon and we’d overheard the nurses talking about him being the last one there and waiting on him to clean up before they could leave; we think this played a part in his decision to delay further draining.) He also ordered a mammogram.

I spent the weekend ramping up anxiety over the mammogram. Everything I’d read and heard about it said that the breast had to be as flat as possible to get accurate scans, and the left breast was at the point of turgidness where there was NO squish. None. It wasn’t just a little taut, it was an overfilled balloon. Since I knew it was filled with fluid, I kept imagining where the fluid could go (nowhere except another inappropriate body part) and exploding breasts, and all sorts of hyperbolic nerve-wracking images. The mammogram was scheduled for Monday afternoon, with the ultrasound to be scheduled after the mammogram was completed. Monday morning we were on the phone, determined to cancel the mammogram if we didn’t get our concerns heard.

By this time I was very sick, so I gave permission over the phone for Nathan to speak for me. He spent the next two hours playing bureaucratic roulette as we tried to get someone to recognize that this wasn’t a normal situation and a mammogram sounded like a really bad idea. We finally got through to an actual radiologist, who of course responded with “Wait, she’s got a large fluid cyst? No we won’t do a mammogram, schedule the ultrasound.” Other than my awesome primary care physician, who couldn’t do much other than prescribing the pain medication, this was the first time we started to feel like I had a chance of getting good care in this experience, whatever it turned out to be. The ultrasound was scheduled for Tuesday (March 16th), along with a biopsy, and they reassured us that they did understand that the area needed draining as well.

(to be continued...)

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Apr 07 2010

Exclusive Unspeakable Horror hardback edition

The Bram Stoker Award-winning anthology in which I am published, Unspeakable Horror: From the Shadows of the Closet, has been picked up as an alternate main selection for InsightOut’s GLBT Book-of-the-Month club! It will be re-issued as an exclusive book club hardcover edition, so buy a copy for yourself and any of your friends you think might enjoy reading a top-notch queer horror anthology. It contains many other excellent stories in addition to my own “Memory Box”; I’m quite excited about this news and looking forward to my copy arriving soon in the mail. Join me in the anticipation, order your copy today!

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