Archive for the 'health' Category

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 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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Oct 06 2011

Bandage-free (for what it’s worth) and general update

I’ve finally been cleared to stop wearing the bandages around my chest, after having to do so every day for five solid weeks (there were a couple of days that we gave me a few hours to “air out” but those don’t really count).  Part of why this was so irritating is that a lot of the skin that the bandages covered has radiation recall, which is a condition or side effect that happens to skin that gets too much radiation (say, from having to get irradiated twice when you’re only supposed to get it once and definitely not while on chemo).  Even though the skin isn’t particularly discolored it feels like it constantly has a small rash or varying degrees of irritation, especially if anything rubs against it.  They hand out handfuls of little sample tubes of Aquaphor, a petroleum-based intense skin therapy ointment at the radiation clinic for just that purpose, but other than keeping a couple to fit in my purse just in case I need it on the go, I’ve long since run through the free stuff.  We’re going through this tub pretty quickly too.

So I should be happier about being bandage-free; after all, it took up a good 30-45 minutes of each day, irritated the heck out of my skin, and was just generally all around a pain (figuratively and literally).  But I hurt just as much if not more without the bandages (to the point of tears getting back into bed several times this week).  There are still pockets of fluid inside me that I can feel move around (and sometimes hear, gross eww yuck).  The doctor attempted to aspirate two different areas this Tuesday visit to get some of the extra fluid out, but apparently while there’s enough to be noticeable, there’s not enough to actually get out with a needle.  This is supposed to be a good thing — it means that my body has a good chance of absorbing it all on its very own, though of course if I notice abnormal swelling call the doc to go in and be aspirated again.  And there’s still a centimeter-sized indentation/hole on my right side that everyone says is closing up quite nicely, but walking around with a hole in one’s skin makes for some paranoia.  At least it’s mostly stopped squeaking this past week.  Now all I have to put up with are the nasty squishy sounds from the internal (but small, really!) fluid pockets.

I’ve got a prescription for lymphedema sleeves and gauntlets; now must find out if Medicaid covers it.  I think I’ll have to make yet another appointment for someone to measure me and tell me what size to get, if I recall last year correctly, though I suppose policy could have changed.  The difference there is that last year, I had the chance to stay on top of things and only come close to actually getting lymphedema.  This year, I got it while on steroid medication and in the hospital, so I never had a chance to do any of the preventative measures I did last year.  It’s one of those things that once you have it, you can control it, but it never quite goes away.  Every time I go on a plane, or exercise, or on flare-up days that you can’t predict the frequency of, I’ll have to wear them.  If I’m lucky, that won’t be every day.  Again, I’ll soon put up a wishlist for those who want to get me a nice birthday or holiday present, since the ones Medicaid is likely to cover are the racistly-named “skin tone” beige color.  Those are fine for around the house I suppose, but I don’t see why something like that has to be ugly to be functional.  There’s a nice company called LympheDivas that has them in bright colors and awesome patterns, and flashy beauty is definitely deserved for going out and about.  Sort of like when I wear brightly colored scarves on my head when out, rather than a neutral-toned hat or beanie — I’m certainly not trying to hide my illness, and if I have to wear them anyway, might as well be fabulous about it.  There’s apparently even a shop in Austin that I will have to get out to and check over once I’m a bit more mobile.

And that’s the most frustrating part.  They were NOT kidding when they said this surgery would take twice as long for me to heal from.  I’m not even back to where I was pre-surgery in my healing from all the other stuff cancer-wise I was healing from before whacking the rest of my boobs off.  Back still hurts, fatigue at near maximum levels (still passing out over the keyboard or while watching shows).  Most days I don’t even feel close to that pre-surgery landmark, much less moving past it to healthier zones.  I am up to doing what I count as PT every day; walking, especially up hall inclines for doctor’s appointments or around the pharmacy or other errand counts.  So does holding the ever-squirming baby or helping to feed her solid food.  Still doing the in-bed exercises for my legs, focusing on those glutes and quads that are weak as jello.  Tried a couple of arm exercises, those don’t go as well and the past couple of days I’ve used my arms WAY too hard — as in I probably shouldn’t be typing and certainly not this much, it’s that bad.  If I’m *lucky*, the next week will get me back to pre-mastectomy health zones, but I can’t count on it.  I just have to keep doing what I’m doing and hope that it will get me there eventually, since they said it would be more like 12 weeks of recovery.  From the surgery.  And then I could start actually moving toward better health states.  I don’t know if this stuff teaches patience or forces it, most days it’s just put one foot in front of the other (metaphorically) to get through and hope that the little bit better is around the next corner.  And the next. And the next…

And next week is another bone treatment infusion, which will set me back a few days with extra bone pain and fatigue and all that not-fun.   I am so very tired of this.  It’s better than dying, for sure.  But so, so, tired.  Life doesn’t stop to wait for me to heal; there’s still kids to take care of, and budgets to help manage, and hopefully a few friends to see, and I have to get help on all of those anyway.  We’ve got someone to help with the kids and house stuff, someone else to help with the budget managing (which we’re going over with the metaphorical fine-toothed comb in October), and I at least still have writer’s group most Sundays, which is work but has a nice social tone to it as well.  Once I left the hospital, the friend visits mostly dried up.  I recognize a lot of that is because the hospital was way more conveniently located than where I live, but I still miss the visits (and the friends, of course).

Speaking of writing, I’ve got an idea to slightly re-write another already-existing story for a market that just sounds cool, even though they only pay semi-pro rates.  At this point I need to be getting my name out there and worry about the pro rates when I can, but not obsess only on those markets.  I think I’ve sent out a story or two since I last reported on such conditions here on the blog.  I’ve written a new piece on the new project I have in mind, and participated again in Leah Petersen’s Five Minute Flash Contest this week (I haven’t been able to for the last several weeks due to doctor visit conflicts).  My two contributions haven’t been all that great, but the effort was made, and at this point getting back in that saddle is the goal, fine-tuning the quality comes next.

There’s probably a lot I’m leaving out, like what about the latest scans?  Well I talked to the nurse about them, but decided not to report until next week when I’ve actually been to the doctor and heard it from him, but sounds like more good news.  I’ve started my anti-estrogen drug tamoxifen, main noticeable side effect so far is the hot flashes are back.  Thankfully my doctor agrees with me that unless scans dictate otherwise, we’re waiting on the ovo-hysterectomy until I’m actually at a point that vaguely resembles “healthy”, so I won’t have to worry about that until sometime next year.  It would be a novel sensation to heal up from a surgery starting from a healthy point instead of at the brink of death’s door; I hope I get to try it.  Even surgical menopause might not be all that bad since chemo and tamoxifen will have put me most of the way there before the organs ever come out.

Oh, and my mom is doing the brave and smart thing and having her own prophylactic double mastectomies next week. (Meaning, she doesn’t have anything showing on scans but she has the same genetic flaw I do and it’s the smart thing to do BEFORE problems show up.)  So take a little of the good energy you’ve been sending me and toss it her way; since she IS getting surgery from the point of healthiness and it sounds like she has good doctors, she should heal quickly and well.  I’ll probably try to have a quasi-interview thing here on the blog with her about it at some point.

Now to quit hurting my arms by typing and watch a show until I pass out.  And take my overdue meds, they don’t help if I don’t take them.

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Sep 27 2011

more writing than cancer topics, I hope

I know I’m healing somewhere when I get this little itch about feeling like I haven’t blogged in a few days and really, ya know, should put up a post about something.  This is a good itch that doesn’t even feel bad, like the good-but bad-feeling itches that hurt but mean wounds are healing do.  It’s been a mostly quiet week too, which is another odd sensation.  Mostly a week of getting house dynamics tweaked and adjusted some as we all learn to live together as a working team (still more work to go of course), healing and being irritated about the whistling hole under my arm that’s at least apparently getting smaller as it heals and stays not-infected.  Gross, but still positive overall.  I have a doctor’s appointment tomorrow (it never ends), where I desparately hjope I can finally get the other two drains out, since they;’re both now producing (just barely) under the 30mL minimum that they need to be in order to get taken out.

My emotions have been up and down over the slow healing of this surgery.  It may not even be all that slow of healing as it feels, just slower than I’m used to.  My body really is stronger and my immune system more awesome than I sometimes remember to give it credit for, and double mastectomies coming on top of twelve weeks of one of the most aggressive forms of chemo my oncologist could devise plus 34 rounds of radiation to fix a stage 4 cancer that had metastasized to the point of partially paralyzing me (resulting in a total of 3 months spent in the hospital this year alone) was asking a bit much of it.  Ya think?

Emotions aren’t logical, however, and I can read all of that and even believe it, and still tear up over not being able to hold my daughter (too heavy for my arms right now plus she kicks a lot), or be the one getting up at night when she needs something, or all the work I was doing to retrain being able to sleep on my side being completely erased and back at the starting line (behind the line really, since even after drains and such come out it’ll be a while before I can try that again), or all the PT I was doing being similarly reset, especially anything to do with the upper body (which totally discourages the motivation to do the other parts of it, even though I do SOMEthing most days, even if it’s just the in-bed ones.  And that doesn’t begin to cover all the various things I could get upset about if I think too long or too hard about all that’s happened to me in the past two years or so.

So. On lighter notes, I’m hoping to reconnect with the visual artist I was working with last year long enough to get that project wrapped up and ready for the world, and I even have the energy to put toward it now and a deal ready to make with the artist so no excuses there.  I’ve started submitting pre-cancer-written stories around again (three submissions this week!) and I’ve made my writer group meetings for the past several, and participated too.  (Heck, at least one I felt I monopolized talking about how to re-motivate and find ways to generate new creative content from a well only slowly filling again but the others seemed to get some benefit from the discussion as well so hopefully that was all right.)  I’m blogging regularly, and not just collections of links (though I’ve certainly found some interesting ones), and I even applied for a slush reader position.

I’ve taken a more active nightly role in helping The Teen with his homework and staying on top of his school stuff (though giving due credit, the caretaker-helper is assisting with that as well by talking to teachers about what homework there is when she picks him up from school) and get some baby interaction every day, usually in the form of a feeding or nap.  Though the house maintenance may not be where I would prefer it, the pathways are kept clear, everyone gets fed, and while the budget is in need of more balancing due to all the medical expenses (any philanthropists out there not already helping out, we’d love to hear from you!) we’re really not doing badly all things considered.  I still fall asleep over the computer most nights; I still have embarrassing medical moments; I still feel like I’m missing out on so much I wanted to do with my wonderful, brilliant baby and my awesome teenager.  These are all true things, and it’s complicated because so is life.

And I’ll take it, because life is worth fighting this hard for.

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Sep 24 2011

weekend links smorgasboard

Broken ideas and repairing them has certainly been on my mind a lot lately, and I’m not the only one.

Why am I not surprised at who this woman’s biggest critics are?

Pronouns galore! How do you use them?

One of the many reasons I’m so very glad to be on Medicaid…

Scientist squabbles amuse me at times; this one is over a measly 200 million year age difference in the moon…

neo-nematodes?  and a 21st amino acid (artificially constructed).   Those wacky scientists keep at it…

…while this information shows that climate change is alive and well and happening as we live, whether you call it global warming or something less political. The animals at least know what’s up

Regardless of how the publishing industry(ies) will end up changing, people still crave Story, and that’s not in danger of demise anytime soon…

…but I’m not really sure I agree with this premise.  I don’t own any of the kindle/nook/e-reader formats so I don’t know how easy they are to navigate but I expect this “codex” argument is fixable if it exists.

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Sep 22 2011

more healing news, plus help a Bastrop fire friend in need

Well, the whistling wound isn’t quite gone, but reasonably managed. Apparently there’s a hole between a couple of the staples that are still up under my right arm, which was also what was interfering with the drain suction on that side.  So we have a new way of bandaging it that’s supposed to create a better seal, which I can easily check on since if the drain stays compressed and suctioning, then air isn’t getting in through the hole and it’s draining the way it should be.  I also can’t move that arm up high at all or it’ll break the bandage seal, which on the bright side keeps me from doing too much, which is always a problem for me — I try to push myself to the limits of what I can do and sometimes go past those limits.  I still find this phenomenon particularly gross, especially when the seal loosens a bit and I can hear the whistling.  In addition to falling into the category of Sounds Your Body Shouldn’t Make (Involuntarily), air has dirt and germs in it and I don’t want that suctioned through my body.  The surgeon doesn’t seem worried though, and the at-home nurses and everyone else who looks at it says that it looks fine with no signs of infection.  So I suppose I shouldn’t be as bothered by it as I am, but it makes me want to tear up when I think about it.  I think I’m just so tired of dealing with all the hassle and daily dressing and bandange changing and slow healing and there’s no break from any of that.  Funny that I can take softball-sized tumors in stride and the equivalent of a teen boy’s amusing body-noise pastime can send me into freaked-out tears.  Cancer is weird.

On the other (left) side,  everything is healing up nicely, all the staples are out, and there’s only one spot that still seems to be weeping fluid under the arm.  I have one drain left on each side as I’m still producing too much fluid to have them taken out (as I remember from last year, they prefer you to be draining 30cc or less per day and I’m doing about twice that per day on each side at the moment).  Sometimes the drain sites hurt worse than the wounds themselves, which are a mixture of hurting and numb, mostly numb.  Again if last year is any indication, I’ll get some sensation randomly back, and some parts will stay numb.  We aren’t wrapping my arms as frequently as we should, which I need to start doing especially while I still have the drains in to get rid of as much of the fluid build-up as possible.

Swelling all over is very slowly decreasing, though my body shape isn’t anywhere close to what I remember being comfortable wearing.  That will change as we finish weaning me off the steroids (anti-inflammatory purposes, mostly) and I’m able to take up PT again (once the drains are out), though I am trying to remember to do at least the PT exercises I’m able to do while in bed.  People are commenting about my hair starting to grow back in, and I don’t know what I plan to do about that.  I feel like I may wear the scarves for a while even when I’m able to grow hair; it’s already shaved, which I’d never wanted, but since it’s what I have, it seems like I might explore the options there before rushing right into growing it out again.  Anyone want to come over some evening and henna my head in cool tribal-esque designs?  Any other ideas people have and want to share for cool things to do with baldness?

Wrapping this up on a different note entirely, most of you by now have heard of the divine wrath against Texas for even considering Rick Perry for Prez; I’m of course speaking of the Bastrop fires, which have devastated hundreds of homes.  As far as I know only one friend of mine was directly affected by losing the vast majority of his stuff in the fires (if other friends have been similarly affected please drop me a line and I’ll do the same announcing for you here that I am for him).  Probably the best way to help him out is to contact (EDIT: his coordinator) at (ihave8en at g m a i l dot c o m) if you have any of these things on the list.  This guy is the one person I know who has had as hard of a time/life as our family has had these past few years.   He’s a widower with two toddler boys, been laid off several times, and has had to move more times than I have fingers on a hand in just a couple years’ time, not to mention assorted other problems.  So if you’re in a place to help him out with any of these things or even stuff like gas money to get himself to and from work and school, send him a note directly.

Eric’s needs:

Kid Bunk beds or toddler beds
King mattress pad
Large (49″ or 60″) Mamasan
Floor lamp/ hanging lamp
Chess set
Bookcases (Don’t need as many now, but still need some)
Tubs, trunks, footlockers (we’re like a gypsy caravan right now, and I like organization)
Suits or just suit jackets
Motorcycle boots
Laptop computer
Coffee table
Bureau
TV
Digital camera
“I really need hardcases for my motorcycle which were in the storage shed. I need to start riding my bike to school for gas savings but can’t take anything with me (like books, computer etc.) without the hardcases. I know it’s pretty random, but on the off chance. Also assorted computer accessories; external harddrive, headphone with mike boom etc.”
Remember to send him a note directly if you can help with any of these things or anything else that you have that might be useful to someone who has lost most of their possessions in these fires.

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Sep 20 2011

wound tracking (TMI warning)

My underarm is not supposed to make a sound like air escaping from a blown-up balloon as you pinch it just enough to let air out from the blowing end.  There’s obviously a hole somewhere.  Thankfully the doc appointment is tomorrow.  But oh how gross.  I hope it’s something to do with the broken drain on that side, and not something worse.  Gross, ugh, gross.

The left side, that just had the completion mastectomy, at least is healing beautifully.  The drain holes on that side huuuurt.  But otherwise it’s fine.  I’m worried about what we’re going to do about the right side, even though I know worrying is wasted energy.  It is what it is, and will be, and I’ll survive it.

I’m worried about the scans on Wednesday, and what we’ll learn from that.  I suspect that each scan will be met with some trepidation ahead of time, even when I’m healed and healthy and just doing my two-month maintenance scans.  After all, that’s the first sign that something goes wrong, is if those scans change what they tell us.  I trust my doctor implicitly, I know he already has a plan B, C, and D in place for whatever shows up, but I’m so ready for some time to just follow a plan A for myself for a while: heal myself, take care of my kids and my family, write my stories of fear and joy, finish my collaborative art project with my artist friend who I believe strongly in, travel around and learn more about this crazy and terrible and beautiful world we live in, and test clean and consistent on my 2-month scans repeatedly.  Reconnect with others, make some sort of difference in peoples’ lives for the better, fill myself and the world with joy because we could always use more of that.  Love.  Live.

But first, gotta get past this gross wound-healing stage.  Wish me a speedier and complication-free healing from here on out, as you have the time and energy to do so.  And spare a moment or three to send good vibes to all those affected by the Bastrop fires — or even better than Facebook-style vibes, find out ways you can help them re-build. (Like I said, we’ve got a full shed that Eric or anyone else with a truck can come scavenge to their hearts’ content; it’s not doing us any good with the stuff just sitting out there not being used. Contact us if you want to be one of those people.)

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Sep 19 2011

Complications and trusting the body

It’s so hard to trust a body that has betrayed you, even when that same body has saved you. Twice over in large events, innumerable times in small events.   From the ingrown cuticle that doesn’t become gangrenous, to the twisted ankle from falling that doesn’t sprain, to the eradication of countless cancerous regions (with the help of judicious applications of hundreads of thousands of dollars of modern technology), our bodies strive ever toward the persistence of life.

And yet the nail that grows wrong to start the infection, the imbalance that caused the twist, the genetic mutation that allowed the influx of deadly cancerous cells, all are as if your own body is trying actively to kill or injure itself.  For some of us it feels like almost a daily occurrence; for some of us, it is.  Housing that duality isn’t easy, and becomes less so when you become unable to ignore it.

Due to scheduling snafus, my drains and staples have been in a little too long.  It’ll be three weeks this Tuesday.  This Saturday night, one of the drains came out on its own.  I didn’t feel any extra pain, or notice any movement I’d done that was different than what I’d been doing for the last two and a half weeks, to provoke this event.  Regardless, when we went to change dressings that evening as we’ve done every day since this started, the second drain on the right side wasn’t functioning and much more of the drain was exposed, even with the suture still holding it in.  It’s a different style than the ones I had last year, but I still knew what it meant when I could see the part of the drain tube with slits curving around and through it; those were the part that took up the fluid — the fluid that was supposed to be coming from inside me.

12 am on a Saturday night; why is it that so many of these things seem to happen at such inconvenient times?  The after-hours exchange was able to get hold of my doctor, who told me that I’d have to “simply” finish taking it out myself and bandage it up.  He didn’t sound that concerned, and since we already had an appointment scheduled for Tuesday, he’d assess the rest of the drains and staples then.  After we got off the phone and were preparing to follow his instructions, my helper noticed an area far up under the right armpit that looked slightly infected.  Since my step-mom was in town and knows a ton of medical stuff for a layperson, I decided to wait on re-awakening the surgeon and have her look at it in the morning before doing anything else.

So I removed my own drain; my helper cut the suture and pulled the pieces out with tweezers.  It didn’t hurt as much as I thought it would.  I cried, at how slow this is all taking to heal compared to everything else, even as I knew it was irrational to cry and it’s not really healing all that slowly.  I cried in anger at the implication of infection, when we’ve changed dressings literally every day, cleaning the areas, freshly bandaging everything, measuring the drainage multiple times a day, and following all the instructions like I always do.  I cried and having to deal with all of this, with the drains on the other side hurting more than the side that’s screwing up.  At the fact that the remaining drain on the right side is the one not suctioning correctly; why couldn’t that one have been the one to come out?  At the combination of pain and numbness on the right side, at the fact that I can’t see what’s going on because of angles and that I can’t raise my own arm high enough to see what’s happening. (This part of the healing I at least am familiar with from before; in the photo art project we have from last year (coming soon) one of the last pictures is me triumphantly raising both arms above my head fully.)

I haven’t cried nearly enough during this year’s cancer round, but I got at least a little of it out last night.  I’ll be calling around in the morning to see if I can get in earlier instead of waiting until Tuesday; the paranoia of even a little surface infection from the stapled area, or the missing drain wound, is a hard load to carry, even if it’s so much smaller than so much of the rest of what’s happened.  Nothing has yet started to separate and open along the incision lines, which is the big danger.   The empty drain wound looks a little pus-y but is already closed over, and we continue to bandage freshly all of it daily (the staple area gets cleaned and fresh bandages at least 2-3 times a day until we see the doctor again.

It still feels like my body let me down, and that’s a dangerous feeling to carry around, because believing in my body’s awesome ability to fight off and keep fighting the cancer is a large part of the psychological success of this summer.  So I have to learn to forgive it the minor complications; to be thankful that this is some of the worst that has gone wrong.  It’s hard to do when I can feel the extra fluid building on the right side, or one of the left drain sites hurting so badly.  But then again, most of the last three years have been filled with things that are hard to do.

O, I am so tired of hurting.

Thanks to Vicki and Mary for their assistance this weekend, and I sure hope that you are both right and everything will be fine on Tuesday.  I also really hope I’ll get most of these drains and staples out.  I’m ready to switch to surgistrips and re-start PT in earnest and the more active phase of healing.  And I may, just may, be ready to start fresh writing again.  I feel very close to the point where I need to be creating a new story instead of just managing the old ones (I’m not abandoning the old work, it still needs to be done as well).  Thanks to my wonderful writer’s group for helping me think through things enough to get to that realization point, and possibly even a starting point for the new story.  Allyson and Lynn, you rock.

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