Archive for the 'Writing' Category

Jul 29 2011

Home Again, Home Again (too much Jiggedy-Jog)

Discharge ended up being Thursday instead of Wednesday, due to (Body Process Alert) several days of diarrhea that was a first as a symptom during all this and since it lasted 3 days in a row (while in the hospital, a week all together) they wanted to hold me for testing.  This was disappointing of course, but no infection found no reason to delay further discharge.

A week later and i find myself almost wishing I’d stayed in another few days.   Not because it was fun in the hospital, but there have been tests and appointments every day since I was released and it’s incredibly exhausting.  I also had to get my first blood transfusion before being released, which on the one hand feels like a set-back, but on the other hand according to the doc is something I probably should have already had to do, so my Special Medical Powers have come through again.  Managing the meds is still a learning curve but way easier thanks to Living in the Future (smartphone app that is a great med tracker).

Anyway, a white blood cell count booster shot every day from Thursday through Tuesday’s chemo, another WBC booster on Wednesday, nurses coming to the home twice to check on me, an occupational therapist yesterday, and physical therapist tomorrow…all of which involve walking and movement when my main exercise for two months has been up and down a hospital hall and around my hospital room make for a wiped out Reesa.  I’ve still managed to go out to eat with family (bald head, walker, and face masks will get you some funny looks in public, did you know?) and eat way too many Reese’s Pieces, and get great baby time (which is good but itself exhausting), so it hasn’t been all bad.

The live-in help is working out well so far, getting along with the family members and learning the ropes of the job.  Since we’re inventing the job as we go along it’s a bit of a creative process; I expect it to take a few more weeks to really settle down into a good familiar routine.  It’s complicated by the fact that since I haven’t been home for two months everything is rather disorganized, and the urge is of course to Clean/Organize All the Things!! all at once.  Ha.  Instead we’re taking it a piece or two a day, which is much smarter and still results in visible, even if slower, progress. Training the other household members to be aware of leaving deathtraps in the thoroughfares (like shoes and such) isn’t as difficult as I’d thought it would be but is still ongoing.  Training myself to do less on my own and ask for more help from the help we’re paying for is a harder process but one I’m working on and improving as well.

Visitors and gifts of chocolate milkshakes (my current obsessive treat when I’m not eating Reese’s products) or other food/gifts/pleasant time shared are still quite welcome even now that I’m out of the hospital.  I’ll still be under neutropenic restrictions for the next few weeks so send your love from afar if you or people you’ve been around are contagiously sick (allergies don’t count, sick co-workers and children do).  Depending on energy levels I might even be able to go out with you on a shared activity such as a quiet lunch!  Otherwise, if I’m not occupied with appointments or baby time I’m still attempting to write and work while passing out over the keyboard, so not much seems changed from the hospital quite yet.  (I even have a hospital bed at home to sleep in to help retrain my body to sleep in different positions.)  though last night I had my first REM sleep that was completely disconnected from real-world happenings in months, so that’s some progress at any rate.

Lesson of the week: when going to a place I haven’t been before, make sure to take the prescribed wheelchair, as I’ll be traveling unknown distances and I can only go short distances in the walker.  Thankfully in this case, we were going to the hospital over the weekend for my WBC booster shots and since Dad was my ride I could use my stepmom’s motorized wheelchair (which was way more fun than my normal one anyway).

Ladies, don’t forget to do those monthly breast exams.  Not only do you not want breast cancer, you REALLY don’t want metastasized breast cancer destroying your skeletal system.  Much, much harder to bounce back from.  Even though I plan to, and shall to the most I possibly can, YOU can avoid that problem while it’s small and manageable and you aren’t paralyzed in your own kitchen or spending two months recovering in a hospital away from your new baby daughter or any of the other ridiculous things I’ve had to go through.  I’ll keep blogging about it, as I think it’s important for people to know what something like this is like, but never worry; this won’t become the all-cancer, all-the-time blog as I’m a Thriver, not just a Survivor, and there’s more to this life than living through cancer.

2 responses so far

Jul 18 2011

Crazy Hospital Happenings

You know it’s finally time to get out of here when the new admittee across the hall is not only ill, but suffering from some sort of dementia that is causing him to repeatedly yell “help!! help!! get out of my house!!” Which means the rest of us get late meds and short shrift as the poor overworked nurses have to deal with the crazy person they didn’t even get warned about.

Thankfully, it looks like discharge date might be sometime Wednesday.  We’ve got a trial-period live-in help, a pain regimen that is working CLOSE to what we want and may very likely work better once it’s more under my control and not dementia-distracted nurse control, and I’m working on my PT to rebuild my muscular system to help protect my poor hole-riddled skeletal system.

I’m sure you’re all anticipating the story of the saga of how I switched from a near-“terminal” cancer patient to one who is riding out Wednesday with a good chance of years’ more survival, and I think writing about it in bits and pieces will be good for me and my continued healing.  Along those lines, please any of you feel free to ask questions about particular things you’re interesting in hearing more about from the last two months, it will help me get some focus since, my goodness, there’s so very much to write about.

2 responses so far

Jun 30 2011

Despair’s Siren

It’s been so long, and so much has happened between last post and this one, that the temptation is to give up telling the story.  Despair’s temptation is always that siren call, to give up the fight, give up the effort, just…stop.  It seems so much easier.  To go backward and tell the stories, the trials, the information that feels like it needs to be told but takes so much effort to elaborate (emotionally and energetically and other words starting with “e”)…well, it feels easier to just let the stories slide into forgetful memory.  To move forward as if the last couple of months haven’t changed everything.  To not move at all — to let the darkness of closed eyes become the all of one’s existence.

That isn’t the right description, however.  There is so much to tell, and tale, and teach, and talk about of this cancer process as well as so much else that surpasses mere survival, that going backward to tell tales becomes going forward into living.  As a writer at the beginning of her career, still, frustratingly so thanks to so many health and other set-backs over the past few years, despair trickles even here.  The messages from other well-meaning loved ones ring the same again and again:  you can’t worry about that now, your health must be your focus, healing your body, fighting the cancer; all the other efforts drain energy and need to happen later, once you know you’re still here to fight those fights.

And in many senses, that’s so very true.  The emotional trials have been so much worse this time around that it tempts despair’s presence to even come close to articulating the feelings involved.  It’s been both infinitely more and infinitely less easy to emotionally survive this round of cancer, for a variety of reasons — many of which I’ll probably write about, many of which are still ongoing, many of which I’ll lose to the sands of time or vagaries of memory fog we all encounter.

But as a writer, at the beginning of her career, still, and still fiercely dedicated to succeeding at that and so many other of my (both short and longer-term) goals, surviving cancer can’t be all of it.  Simple survival can’t ever be all you do, to be human.  Life is ever so much more than just getting through the day, whether you’re a shut-in with only internet friends or a best-selling dynamo or a physics genius or just one of the many solid people that fill the world each day with the simple things they do for others as well as themselves.

I close my eyes, and there is the stasis, awaiting.  The despair, regardless of what good news arrives daily, that the dreams are dead, the goals are withered, that the blackness will be all that remains.  That the stasis reality is the real one, and we fill our lives with the illusions of the rest; that reaching out to others will always result in not…quite…touching.  That I will float in that black and so will all the rest of you, islands lost in our seas of aloneness.

But as a writer, at the beginning of her career, still, every word I type changes that reality, moves that perception into something else, changes despair into hope.  Each complete breath can be as a person; and as a mother; and as a lover; and as a friend; and as a writer.  There is no way to illuminate the blackness that I know of, except by deciding to do.

And the feeling of futility is great, often, when making that decision, because there is so much, so very much to do daily just to survive, to keep breathing, not even counting all the other goals one might want to set for oneself.  Even with the enormity of the support group I have surrounding me, cheering me on, encouraging me to go and do and live…each new breath is so very hard to believe matters in the world, matters to others, matters at all.

It’s like creating a novel:  if I look at it as the entirety of what it is, it’s easier to never get started, the complexity and intricacy and fullness are overwhelming.  So I shall attempt to break it down into manageable pieces, bite-sized chunks, little posts like this one that shine lights of understanding onto pieces of the whole, in the hopes that one or more of those pieces will reach you, Fearless Reader, and touch something within your brain, your psyche, your soul, your selfness, enough that you want to pass it on to another, who will turn and share with another reaching traveler on this spinning ball of beautiful and terrible dirt we inhabit.

And whether that contact results in the culmination of my goals as a writer, lover, or mother, it will add to the strength to keep breathing as a person.  Because the struggle to live, just survive, is itself fierce and fragile, for all of us from ants to assholes.  The kinesthetics of contact, touching each other, is the first and most important sensory experience of our lives from the moment we become aware we’re enveloped in the womb.  The tragedy of so many of us leaving this world bereft of that same all-encompassing embracing is part of what is worth combating while we exist.

Despair

–noun

1.loss of hope; hopelessness.
2.someone or something that causes hopelessness
–verb (used without object)

3.to losegive up, or be without hope (often followed by of ):to despair of humanity.
–verb (used with object)
4.Obsolete . to give up hope of.
Origin:
1275–1325; Middle English despeir (noun), despeiren (v.) < Anglo-French despeir, Old French despoir (noun), despeir-, tonic stemof desperer (v.) < Latin dēspērāre to be without hope, equivalentto dē- de- + spērāre to hope, derivative of spēs hope
Hope
–noun

1.The feeling that what is wanted can be had or that events will turn out for the best: to give hope.
2.a particular instance of this feeling
3.grounds for this feeling in a particular instance
4.a person or thing in which expectations are centered:
5.something that is hoped for
–verb (used with object)
6.to look forward to with desire and reasonable confidence.
7.to believe, desire, or trust
–verb (used without object)
8.to feel that something desired may happen
9.Archaic . to place trust; rely (usually followed by in ).
—Idiom
10. to continue to hope, although the outlook does not warrant it
Origin:
before 900; (noun) Middle English; Old English hopa; cognate with Dutch hoop, German Hoffe; (v.) Middle English hopen, Old English hopian

2 responses so far

May 14 2011

problem-solving weekend links

A couple of these were found in an old draft from a month ago, but I added new ones as well…

A neat perspective on how often most people are attempting to solve the wrong problem

A new physics particle? or just a data blip?

Will any habitable exoplanets be found close enough? Centauri Dreams ponders this question…

Gay vigilantes fight back — what do you think?

Adventures in personal health insurance — one person’s experiences

Shady Characters — the secret life of punctuation ; interesting blog for writerly/editorly types about obscure punctuation marks and their history

Sadly, the Japan nuclear meltdown was worse than they were saying…

One response so far

May 06 2011

in-between

Dealing with Medicaid is a special hell, in terms of getting things scheduled and actually done. Each procedure needs “pre-authorization” that takes anywhere from 1-5 days, so nothing happens on a speedy time frame and there have been several re-schedules due to the authorizations not going through.

Radiation finished up last week, though the effects will be ongoing for a few weeks according to the doctors. Skin irritation on the abdomen, and some variable and lack of sensation in the anal and vaginal areas continue, hopefully as temporary effects. Hips are definitely still quite unstable, and the left hip continues to have very uncomfortable problems that make me think there is something bad happening on that side beyond compensatory imbalance. I definitely want to be wrong on that feeling.

We did another chest/abdomen/pelvis CT scan post radiation today (finally, after 3 reschedules) so that will hopefully tell us more about whether there is anything newly wrong on the left hip, as well as the progress so far from radiation treatment. It was painful and I was unable to straighten my left leg, thankfully we could arrange pillow props under my knee and still do the scan I cried and had to break once to sit up for a bit, but didn’t scream so that is some improvement from when I first began radiation a few weeks ago. Next week we have a consult for installing a port catheter in my chest for chemotherapy (and hopefully also the install itself, assuming we successfully navigate the pre-authorizations). My medical oncologist said that while the port will be sore for a few days, there’s nothing stopping us from beginning chemo right after it is in. So possibly as early as late next week, almost surely by the week after, I’ll be beginning chemotherapy treatments. We will do some number of these, every 2-3 weeks depending on how my blood cell count keeps up and in healthy ranges. Then we’ll schedule a mastectomy, which for me can’t come fast enough at this point because the lump under my arm is getting to be in the way and really painful. I am hoping it responds well to chemo so I can get some relief before surgery, but if it keeps up this bad I will of course be talking to the doctor to see if we have other options sooner like radiation for that spot or something.

I’m actually reading a couple of books, which I haven’t done in quite a long time. It’s good, it’s sparking writerly thoughts, unsurprisingly. My brain seems to be taking on the logistics of figuring out how it wants to be working during all of this madness, which pleases me since it’s a good brain and generally solves those types of problems well. Patience with the progress is a little trickier but I’m managing it admirably given everything else, I’d say.

I keep promising baby posts but reneging; hopefully I’ll quit being that naughty. In the meantime, still perfect baby, still awesomely low maintenance, still gorgeous and developing her superpowers daily. If you’re local, come meet her and join her fan club!

Comments Off on in-between

May 01 2011

noting energy trends

Coming back from a place where writing can’t happen (as opposed to isn’t happening, which implies more choice in the matter) is interesting. I have felt no guilt about not-writing during this time, since the inability is so obviously related to physical and mental capacity being impaired due to cancer and not any sort of attitudinal problem. That doesn’t mean I haven’t felt bad about not getting writing done, or frustrated about the inability to keep up with things like attending local conventions for my craft. I do get upset about those things, but it feels a fairly standard irritation whenever one is stretched too thin on resources.

Blogging more regularly was/is a first step back toward daily writing. It’s more low-impact on creative energy than fiction writing, while still evoking the routine of words-on-page that is so important for sustaining daily output. This post is more to note the beginning of the next step, a low-grade mental discomfort, or itch-equivalent, where I have not quite enough energy yet to sustain a concerted creative effort at a computer sitting but the desire to be “doing something” of that sort increases another notch or three. Hopefully that means that the actual energy to do creative writing is coming back soon, since the in-between state isn’t the most fun to inhabit even if it is a sign of further progress.

2 responses so far

Mar 26 2011

short weekend links

Published by under follow the link chain,Writing

Only a couple this week… but hey, I wrote a thingy this week! rough first draft, but still. willpower for the win.

Tobias Buckell is smart about book piracy.

I’ve been reading this series and enjoying it: Key Conditions for Suspense, part 14, plot and story cycle

One response so far

Mar 12 2011

hobbled weekend links

A rather scientific look at current facets of the publishing industry.

Interesting Supreme Court decision on the same-sex marriage argument.

Cyborg brains!

Amanda Hocking’s own words on her recent rise to e-fame — nicely balanced

Interesting feminism interview

New tech helps reduce pain for certain cancer treatments

And one on analyzing aspects of polyamory — long but reasonably sane-sounding

Abstract art? No, a map of the history of science fiction

4 responses so far

Feb 12 2011

sparse weekend links

light link load this week!

An astronomer and writer’s blog, full of many interesting links! Mike Brotherton

Silly science fun: Orbital Mechanics for Werewolves

Hubby is selling his old car! See craigslist ad here. (Mileage = 154739, price neg.)

Comments Off on sparse weekend links

Feb 06 2011

late weekend links

Linked several places, why the space race is in stasis over at Slate.com.

I’ve had some similar understandings over the past couple of years given health and other crises, but this is a nice article for writers on how to keep writing when life falls apart.

More updates on all the new exoplanets we’re finding

Awesome blog discussing the intersection of law and comic books over at Law and the Multiverse.

Interesting author response to critics of a controversial book about applying scientific process to moral questions

A transgendered person’s perspective on the gender inequalities in scientific fields. I like this kind of activism…

A neat link about progress on creating “invisibility cloaks” outside of science fiction and fantasy.

From a wiki-ramble (I started with shrunken heads and ended up here), a creepy, we-haven’t-learned-from-history quote from the Wikipedia entry on Hermann Goering, Hitler’s second-in-command:

Naturally, the common people don’t want war; neither in Russia nor in England nor in America, nor for that matter in Germany. That is understood. But, after all, it is the leaders of the country who determine the policy and it is always a simple matter to drag the people along, whether it is a democracy or a fascist dictatorship or a Parliament or a Communist dictatorship. …voice or no voice, the people can always be brought to the bidding of the leaders. That is easy. All you have to do is to tell them they are being attacked, and denounce the pacifists for lack of patriotism and exposing the country to danger. It works the same way in any country.

Comments Off on late weekend links

« Prev - Next »