Archive for October, 2011

Oct 29 2011

weekend links ongoing

Published by Reesa under Writing, health, it's science!

Species matter — how many, how many are here, how many are dying…

Is our moon necessary for life?  I love it when scientists argue like this…

Yay, more genome sequencing!  My Mom said she used to use these lizards as earrings as a kid.  Rural outdoorsy old-time fun…

Overcoming centuries of prejudice just in time for big business to exploit the continent they’ve ignored so far…

…while we let our future frontier potential get farther away by the year.  Great article by Neal Stephenson along the lines of “where are my jetpacks and flying cars?”

I’ve never been a diet-obsessed person nor ever before had to worry much about my weight, as the old “eat reasonably and get a reasonable amount of physical activity” always worked for me. However, with the recent cancer battle combined with the mid-30s slowing of metabolism, I’m going to have to pay a little closer attention to “eat right and exercise” if I want to get back anywhere close to my former healthier body shape and condition.  Here’s an article hinting at why some people may be having problems with even that strategy…

good advice on choosing language when writing historical fiction

Futurist fiction become reality? This reminds me quite a bit of Elizabeth Moon’s Speed of Dark

What is it about the passive voice that gets people all fussy? Especially when most of the people griping either use it themselves or can’t adequately define it.

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Oct 28 2011

Updates…

Published by Reesa under Writing, health

They think they’ve identified the correct antibiotic I need and have started me on it, taking blood cultures today and tomorrow to ensure the correct response, but last night the fever spikes weren’t as bad.  Everyone is being great as usual, half of them remember me so I’m not having nearly the problems I was the first couple of times I was here.  I missed out on hearing my mom’s own return-to-hospital drama so will hopefully get caught up on that news later today.  The infection is either in my open wound under my left arm, even though the discharge isn’t infectious, or in the port cath itself, which may mean another surgery to remove and replace the one I have.  And that’s the News as known today.  Still writing new things, though no more on the brand new shiny thing, not quite sure where I want to take it, hopefully one of my writer friends will be one of the visitors and we can brainstorm this week.

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Oct 27 2011

still here…

fever spiking and going down for past few days, nurses are great about changing sheets and helping out whereever possible.  Ufortunately, all I can do is lay around and make work for them by soaking sheets with sweat and eating ice and such. They’re taking lots of blood for cultures, got an ECG for the first time as well as an EKG when first coming into hospital and an xray.  On two different types of blood thinners to prevent further clots, but they can’t do anything about the one that’s already there except wait for the body to deal with it.

I’m frustrated because I was keeping up all the recommendations, legs elevated in bed at or above the heart; doing my in-bed PT exercises nearly every day; walking more than to and from the bathroom several times a  day plus walking a little extra, especially on appointment days;  had even gotten up to walking down several houses and back (Round Rock has TERRIBLE sidewalks).  Now I can barely stumble the step it takes to get the bedside commode, can’t move or anything without help, and spiking 103 fevers every night isn’t helping.

At least this part isn’t cancer, even though they aren’t quite sure about why the fevers keep coming around. I miss home,  but the upside is that the helper is hopefully getting a little bit of rest having only one person to take care of so constantly so she’ll be able to catch up on rest.  Nathan has stopped by the last couple of nights which has been nice.  I miss my kids bunches, will probably miss Wednesday’s first real crawl being stuck in herel instead of her cute 5 point crawl-scoot she’s been managing.

This has been a bad time all around.  But a perfect example of the one step forward, three steps back concept in healing.   At least it isn’t cancer bears repeating.

One good note: Whether or not it gets finished, I wrote the first third (possibly fourth, depending on how the sections break down) of something brand-new that I had no idea of before all this latest cancer round started. So that seems like progress to me.

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Oct 24 2011

Back in the ER again…

Published by Reesa under health

Should be the title or chorus of a country and western lament song.

The first one a few weeks ago might have been the flu.  Which Mary smart ly pointed out in the last post, the flu takes weeks to heal for healthy people.  This time, it’s a blood clot in my lung.

A blood clot in the lung can feel an awful lot like despair, did you know that?  Less oxygen to the brain and all that.

Web comments, emails, or text are best ways to ahold of me right now as talking uses air and I like to talk, and every time I do the machine beeps at me and I have to stop and breathe.

Or if you’re looking for a mostly-captive audience to talk someone’s ear off about some life issue without a lot of advice but tons of smiles and nods and grunts of compassions or whatever, come visit me, I’m your person.  Right now I’m in the ICU room 15 and those are more restricted, I think to 1 (maybe 2) people at a time and no kiddies, but they’ll be moving me soon and I’ll update as more news is known.

Same hospital, I’d be crazy to go elsewhere at this point.   And they got me on med regimen right off this time.

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Oct 22 2011

Battling Despair

I have wonderful people at every turn telling me good things, sending me unsolicited but supportive emails, leaving awesome comments on my blog, helping me out in every way, and still I feel poised on the brink of collapse into a deep dark place.  I think part of it was getting sick; it is no exaggeration to say that along this path every time I start to feel like I’m getting a handle on the road to healthiness, something happens to set it back.  This time it was my stamina that was drained by the flu or whatever illness it was.  In fact, I’m still running a mild fever (though now within the “safe zone”) off and on and still resting or sleeping large parts of the days, so it makes sense that I feel weak as a premature kitten.

This hole that appeared under my left arm (instead of the one mostly healed on my right) doesn’t help either, opening up one or more times a day to drip fluid down my side.  Of course everyone assures me that it shows no signs of infection, the fluid is the “right” color to be draining, but that side is so sore and weak, and that was my stronger side, so now each side is weak.  My walking  PT shows how much stamina I’ve lost, hyperventilating and in tears walking the length of two houses trying to maintain proper core muscle engagement and walking form. I had been up to three, maybe even four house lengths before getting sick.

The helper looks for ways to cheer me up, though that wasn’t part of her job description.  She also looks for ways I can interact with Wednesday without having the baby cause too much pain (kicking and squirming and such), and all of that helps, just like the kind words and emails and comments mentioned above.  I don’t let myself think about how much lower I’d be if  I didn’t have those things to keep me going.  But I’m riding the ragged edge, and wondering how much longer, how much more I can take.  I’ve been making myself keep writing bits and pieces, making myself send out stories.  I never used to care about rejections before, they’re part of the process; but the latest (at least it was personalized) rejection on a piece of flash fiction saying they were too obtuse and didn’t get what was happening, when I thought it was a finely-tuned piece where what’s happening is obvious and it all fits together, even the title…well I was warned that there would be a percentage of readers that just don’t get it.  You can’t dismantle your work for those sorts of folk.  I know all of this, have learned it over and over.

And still, I feel weak.  If I could sell just one story, I know that would rejuvenate me, give new life into my work on that front, but personalized or not it’s rejections that keep coming back.  And I know all the pep talks about the right story finding the right market and gotta keep sending them out to have a chance of selling them and so far…I am doing those things.  But I am tired, and weak, and the work never ends, and there’s not even a break in sight much less a step forward.  I’m running on a treadmill that’s being dragged backwards.  And these are NOT the sort of thoughts to have if one wants to stay cancer-free.   The mind-body connection does matter, just like the modern drugs and radiation that killed it matter.

So far, the light is still winning; so far, I can still remember why it’s worth it to keep living (love, always love, among other baser things); so far, I still believe in the power of modern medicine and the awesomeness of my doctor and the love for myself and the love those around me give me.  But please, universe, if anyone is listening, send some big positive tangible lasting step forward soon.  I’m floundering here.

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Oct 19 2011

Prophylactic Breast Action

I bet I get at least one spam comment thanks to the title of this post, but wanted to talk about yet another something most of you ladies may not know about, and since my cancer chattering on this blog has already potentially saved one life, I look for opportunities to do similar things when I can.

For those of you with hereditary breast cancer in your family, we’ve already talked in the past about getting tested for any of the genetic mutations that are likely to cause you to develop breast cancer, often far earlier in life than most people who get cancer do.  BRCA1 (the one I have) and BRCA2 account for only about 5% of all breast cancers, and are easily testable.  If you have a family member who contracted breast or ovarian or uterine cancer before age 40 you might easily be able to convince your insurance to pay for the test; even more likely if a relative has the actual gene.  For those many uninsured, I’ve been told it’s only a few hundred dollars for the test, which is definitely worth it compared to the hundreds of thousands of dollars cancer costs.  They’re also finding more genetic factors besides just these two that contribute to a higher tendency to develop breast cancer at any point along the living way.

I just got correspondence from my mom that I’m sure she won’t mind me sharing a part of here, as examples of what I mean.  She was one of those many women who had lumpy breast texture by nature, and even went in a couple of times to get small lumps checked out (always benign).  I know several of you out there like that; I know others with some of the factors described below, so please take this seriously.  No one, but no one wants to go what I’ve had to go through over the past two years to stay alive thanks to rogue mammary tissue.  It’s not worth it, trust me, especially when there are so many other options.

For those who don’t know, my mother just made the very hard decision to have double mastectomies as a prophylactic measure — meaning she’s not had any cancerous or even pre-cancerous signs show up in her breasts but because she tested positive, as I do, for BRCA1, she decided to remove the biggest source of the danger before any problems showed up.  She requested meticulous testing of the tissue after the fact, to see what might have been hiding in there besides the known genetic flaw.  She picked one of the best surgeons in the Dallas area, and one who has actually organized a group to spread the word about BRCA and other genetic cancers.  She learned that although she has no active cancer cells in either breast, she has “lobular hyperplasia markers” in the right breast and “prolific fiber cystic changes at the cellular level in both breasts”.  Both of these increase your chances of breast cancer by 2-4% each.  That may not sound like much, but a nearly 5-10% increase on top of the 40-85% increase the BRCA mutation gives means that for her it was just a matter of time before something went wrong.  So she feels even better about making the right choice than she did before the surgery.  I hope in a later post to have a more personal account from her, perhaps even interview-style, of the differences in making a decision about prophylactic surgery, which seems to me on some level to be a much harder decision than when something has already gone wrong and there’s already an obvious solution to your problem (surgery or death), like I have had to deal with.

Scrape together, beg, save, or borrow, but if you have any reason to believe you’re a higher-risk person for breast cancer don’t live with that fear, go find out what there is to know, which is more every day thanks to all the help groups and organizations out there.  Don’t put it off with the “well it probably won’t happen to me” excuse; my mother had that as the perfect excuse — making it to her mid-50s with no major scares, breast-feeding two children with no problems as a younger parent.  And then look at her statistics; not very comforting, those.  The BEST she was looking at was someone 46% more likely than the average person to develop breast cancer, and the worst at 93% was practically a guarantee.  Don’t let that be you.  Do your monthly breast checks, sure; but if it runs in your family don’t stop there.  Find a doctor who will work with you to educate you on options, risk factors, and all the other things you can do to take charge of your own health, to live the longest your particular set of genetic factors will let you, rather than playing games of statistics with the universe.  (It tends to cheat.)

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Oct 18 2011

Mostly baby, little bit me

Wednesday has continued to be mostly the perfect baby.  She loves everyone and has a smile that even baby-haters seems to want to return, and fits into the world like she already knows how loved she is and how strong a place she has in it.  I wonder if that’s what my parents felt like when they had me, not to be egotistical-sounding.  But my name means beloved, and I have always strongly known myself and who I was and how much I was loved, and if the indications are right, my bright and shining Wednesday will grow up with a similar knowledge.  I hope it leads her to even greater things, places, and people than it has me.

I dream of her at different ages, and my superstitious self hopes desperately that means I’m alive to see her at those ages.  I do my PT even when I don’t want to, when everything screams that it hurts too much and no one cares anyway or will notice if I do, because I want to be there for those ages.  I save my tears for late at night when everyone is in bed that I can’t right here, right now, carry my baby around to rock her to sleep when nothing else will soothe her, for one of many frustrating examples of limitations.  I have to be happy and thankful that others are there for those duties, and I am.  But there is so much I am missing and some of it I don’t get do-overs or make-up work later on.  Some of it I just have to be happy she is getting from others, so that she can be that all-loving open and friendly baby I wanted her to be, so that she can grow into the person who knows so solidly, without question, how loved she is in the world.

And yet still, she and I have a special bond.  I knew her in the womb and here she is:  how I knew her, yet ever-changing, just as she should be.  So much of how she was born is tied up in why and how I am still here to write these words.  She knew when to come out, and how, and did, and because of that, I’m currently cancer-free and without broken hips.  Timing matters.

Even if I have months’ worth of PT to continue, to get to where I have a chance to keep up with this bright and beautiful being, every tear is worth it.  The set-backs are harder to deal with — more fear-inducing — because superstitious brain gets that edgewise word in every so often no matter how strong logical brain gets trained.  So a week of the flu takes away three weeks of back-bruising PT progress, and there is fear; a scab comes off the left-side scar to reveal a two inch deep suppurating hole, when it was the right side that had the original hole and the greater damage and more swelling, and there is fear; to talk about these things feels like it gives them more power to damage, and there is fear.

I still do all the “right” things.  If my PT is back down to 10 walks from here in bed to the bathroom and back, then that’s what I do.  I keep helping The Teen with his homework, guide the helper to helping me and the baby and the house, keep an eye on the managing of the house to help my husband, and all the other jobs that I can do, and am good at even in sickness.  I get my friends to remind me they believe in me, though probably less frequently than could be helpful, heh.  I’m back up to doing something about writing every day, even if it’s just energy enough to process a rejection (hey, first rejection of this back-on-my-feet slog today, yay!), so that’s something too.  I keep reporting in to the doctors everything I’m supposed to, which means I’ll be up groggy and early and painfully (for me) tomorrow to get this leaking hole seen to.  Gross, still, but cancer is never pretty, easy, or tidy.  Fuck Hollywood for THAT lie.

People ask me how I feel, and I honestly can’t say.  It’s all just too much.  Sometimes you’re just neutral, not feeling much of anything.  Sometimes you’re rapid-cycling through so many emotions so quickly it might as well be idling in neutral.  Sometimes you feel something super-strong at exactly the wrong time — say while talking to a boss, or while trying for once to “take a break”.  All these drain you when you need filling, so when someone asks “what’s wrong?” where do you even begin?  It becomes less about taking a break and more about trying not TO break, because (for example) there’s this perfect, beautiful, bright and shining little girl smiling at you like you’re the best thing in her entire world– and you know that for her, that’s HER truth, and that matters.

For now I’m going to wrap this up and either find a new destination for my bounced story or watch an episode of something in hopes of getting a little sleep before my exhausting and scary doctor day tomorrow.  Possibly both.  Perhaps neither.  Either way, I know tomorrow I get another one (probably more ) of those smiles, maybe even a laugh, and that means it’s a day worth living for.  I hope all of you can find something even half as good to get you through your own days of fear and happiness.

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Oct 16 2011

conflicting weekend links

Drugs are bad. Drugs are good.  Bad drugs are good.  Good drugs are bad. Wait. Bad drugs made in a lab are good.  No wait, designer drugs are bad.  Hey wait, this “bad drug” can do a good thing in a lab.  But…but…uh….

Girls who are boys who want boys to be girls…I really love the fact that doctors can give delayed puberty medication to kids who are trying to figure out what gender they want to be when they grow up, one of those rare compassionate medical science manifestations.

More on habitable exoplanets — which at this rate we’ll probably never get to explore, except in our fiction…

…or perhaps in bodies better able to survive the trip than our own.  Made in our own images? downloadable minds? multiple minds inhabiting one manufactured body? All topics guaranteed to cause endless debate and argument…

I love haptic tech, and this one could even be useful to blind people, though it didn’t start out with that in mind.

Speaking of conflict, I love honesty from the ultra-rich, it always tends to cause an uproar

Why fixing the primaries is harder than it looks

Two good headlines:  We Need a New System and Terrorism Can’t Be Taken Out and Shot

And yet more realistic predictions about the death of the American dream at least the one of American dominance

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Oct 14 2011

clean, but sick

I came home from the doctor appointment today(written Tuesday), and by 9pm had a fever of 103.  Since I was told to call in about anything above 100.4, I called the after hours doc.  Apparently that concern was more while I was in active chemotherapy, so he told me to take acetaminophen and watch it. If it got worse to go to the ER, but otherwise just call the doctor in the morning.  It’s been so long since I was actually sick like normal people get that it was a set of novel sensations; rjwpppppppppppppppppppppppppppppppppppppppp/////////////////////////////////////////////////

Tried starting this entry a couple of nights ago.  The above is a genuine (though edited–and trust me, you wanted it edited, the slashes went on for four more horizontal screens’ worth) example of me falling asleep at the keyboard, and the hijinks that can ensue.  I had a much more damaging and embarrassing example happen a few days ago when I apparently cc’ed someone else on a private email that shouldn’t have been copied, so I’m trying to put measures in place to minimize the potential for that kind of future damage since I’d like to keep the friends I have, thanks.  So a more public apology to the both of you C & J for that, since I’ve already extended personal apologies to each, and a promise to change my email habits until I know I’m past this stage in the healing process (the falling asleep and hitting random keys stage).

Anyway, back to the better and worse news that was the original point of the post.  I’m finally better enough to get back online, I’ve been off for a couple of days doing not much else except roasting in my own juices and existing.  Even breathing was/is a struggle, since I slept through so many pain med cycles that everything hurt.  It was impossible to keep an eye out for new pains like the doctors asked me to because everything hurt so bad I couldn’t determine what was new and what had just been managed by the pain meds.  They put me on antibiotics and told me to keep as much fluids down as I could.  I only threw up once, otherwise I took the anti-nausea pill I have on hand for “as needed” and managed to keep the crackers and juice down.

I noticed my right side hurt more which made me paranoid about appendicitis so the main thing on my mind was please, if anyone out there is listening, no more surgeries for a while, I can’t take any more surgeries right now.  And of course it makes more sense for my right side to hurt more because more has happened to it; it had the bigger hip tumor, the bigger breast tumor, more to heal all around, so when I started missing my pain med cycles it would make sense for the right side to hurt more all around.

At the worst of being sick it almost made me miss the hospital, where I wouldn’t be missing my meds so frequently.  On the other hand, I wouldn’t have gotten the sleep that probably helped me get this far into healing in only a few days.  I’m still totally shaky on my feet and weaker than I was before getting sick, but I can at least stay awake for an hour or two at a time and talk to people, which wasn’t happening for a couple of days there (sleeping or dozing or totally zoned out and only half-aware of what was happening in my environment).

I got our helper to try to wake me up if she heard my med alarm on my phone go off, so for the past day and a half I’ve been slowly catching up, and now I’m pain-wise almost back where I was, though not quite, and still hurting enough that it’s hard to breathe (and therefore hard to talk).  I had been doing my PT for a week straight, so I’m upset about having yet another break in that routine, but will start again as soon as my pain will allow it, probably in the next day or two.  The lymphedema specialist called during one of my zone-out days, so I had to ask if I could call back because there was no way I was going to be able to coordinate all of getting that set up.  This morning I found the paper with the number and it took me a good two minutes to figure out what number that was and why I needed it, which should show you how out of it I was.  I checked in with my nurse every day, including today, and she said she honestly thinks I might have caught the flu, since she had another patient with the same symptoms who ended up going to the ER and that’s what he had, type A flu.  I could have gotten it from my husband, who was sick last week, or even from the baby’s flu shot.  They were supposed to have given me the flu shot during my Aridia treatment but didn’t, but I suspect I might have gotten sick even if they had given me the shot, since I got sick the same day which means I’d already been exposed (which I’m thinking I no longer need the shot, now that I’ve gotten the flu itself).  So I keep drinking buttloads of fluids, finish my antibiotics, get back on my med cycle fer realz, and go to the ER if there’s a sudden reversal in the healing.

The good news, that everyone SHOULD be excited about, and most are: The latest set of scans are clean.  The oncologist and radiologist looked back through the last four sets of scans and compared them all to make sure, and they said maybe if you squint really hard and imagine really creatively you might pretend to see something in one of the old places, but that realistically the newest set of scans look clean, not even really a ghost of a tumor left.  Now this doesn’t exactly count as remission, since there isn’t a trend or history of clean scans, this is just the baseline to start from, but it’s a pretty darn good one, and I’ll take it.  I’ll keep taking the tamoxifen, keep taking the scans every two months, keep taking care of myself through PT and diet, hopefully avoid getting sick like I just did too much, and with all that work and a little luck and all your good thoughts sent my way we’ll hit remission yet.  Thanks to everyone for all the good love and support sent my way, keep a healthy image of me in your head whenever you think of me, and I’ll keep breathing, and healing, and living, and loving, and writing.

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Oct 09 2011

far-reaching weekend links

necropants, anyone? some interesting Iclandic folklore

Scientists need to read more science fiction if they’re just now thinking of growing their own food to travel to other planets…

…and gamers beat the scientists at their own game by solving an AIDS research problem, gaming style.

I would totally get injected with tumor-killing nanospiders if necessary.

More science fiction fun, a Tattooine-style planet discovered with two suns

Do you want to be a planet hunter?  Some of them are already finding planets

Live tiny cypher-makers are cool, but how do you transport the bacteria discreetly?

This sort of redesigning of education (in this case homework) excites me.  Now if only the system would actually DO it…

Interesting article about polyamory to think about. I’ve certainly been a proponent of the notion that in a “simple” triad, you have each person’s relationship with themselves that MUST be counted along with the dyad pairings and triad dynamic to start to get a true scope of the number of relationships you’re dealing with.  It’s hard enough over the course of a lifetime for people to get more than a murky understanding of the inside of their own heads, much less find compatible neuroses with just one other person for any length of time in a healthy fashion. Attempt to add in a third person and you’re doing that all over again multiple times; is it any wonder most people think poly folk are crazy or that most poly relationships fail in spectacular fashion?  Everyone involved has to start from a level of maturity most people don’t achieve to have a chance in hades of surviving the ride…and here’s yet another article backing up these sorts of thoughts to read and ponder.

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