Nov 14 2011

dodged a bullet-equivalent

Published by Reesa under wonder woman

Neither my hip or my pelvis are broken.  Also, there are no new signs of metastasis.  It is simply a severe muscle strain that the PT people will help me with.  They’re still trying to figure out what the problem is with the recurring fevers and continuing to take daily blood cultures, but no broken bones. No cancer.  Rejoice.

45 responses so far

Nov 13 2011

patient / doctor trust

Though I only saw my doctor once this week, a conversation with someone close to me made me thankful all over again at the trust that doctor gives in managing my own pain medication.  It’s been made clear to me that even though my very own doctor believes me to be mentally competent to track and manage my own pain levels and how the narcotics are affecting me, the belief is not shared by everyone in my life.  It’s more surprising than it should be, I suppose.  I men, falling asleep more and having periods of time of being unable to stay awake or grogginess aren’t just narcotic effects, they’re also body healing actions that the narcotics help encourage.  The morning slow start is due to both and again, manageable.  But I’m definitely more surprised than I should be to learn for sure that there are people out there who know and interact with me that believe the narcotics have heavily affected my thinking or my brain.  Especially when most people have commented how impressed they are about how lucid I am on this many narcotics, and again the mutual trust built and established with the doctor about that very issue.  I have my own fairly strong theories as to why the people who think me to be more incapacitated than I am think that way, but it’s not worth talking about here.  Just interesting to note how different people have reacted/are reacting to my situation.  Thank you to those of you who do see and believe in me.  And trust me, I’m quite looking forward to the days when I can start ramping down from this level of narcotics; it’ll mean that I’m finally getting better. And it IS true that my brain had to adapt to that level of drugs; instead of thirteen or more thought tracks at once, I’m reduced to about half that, and some days that IS frustrating.  But it’s nowhere near non-lucidity, and I think I know enough about myself to speak up if I can’t handle something.  Right now I can’t handle having to stay in the hospital, but there’s not much to be done about that nor is it related to my brain power or lack thereof.  Everyone send non-broken hip thoughts my way, please.  A strained muscle I can PT much easily back from than a femur or pelvic fracture, so send “intact” prayers, chants, thoughts, lit candles, or whatever way you send out good thoughts to others.

11 responses so far

Nov 12 2011

intriguing weekend links

Remember that frozen lake they found in Antarctica? We could learn a ton of cool things about our Earth as long as we are careful in examining it

Scientists work on better ways to identify circulating cancer tumor cells in the bloodstream – this is DEFINITELY an area I’d like us to see money spent on

Both good and bad for the environment, but interesting regardless in its uses — foamed roads

Since it’s been a while since I’ve linked to BLDGBLOG, here’s a double feeding — plus the title is a great pun

This experiment we are already doing to our baby, thanks to an excellent and educational conversation with txanne and John Singer a few years ago: Hearing Bilingual

Just in case you needed to know, how much effort a suit of armor adds to treadmill walking, I suppose for those knights who don’t have time to change between jousting and the gym…

Dragon Mom — one woman’s thoughts about parenting terminally ill children.  Not easy reading, but probably worth it.

An article to remind us that “habitable exoplanet” doesn’t have to mean easily habitable or even habitable by humans

possible theory on how planets get their water…and maybe how Earth got ours

crowdsourcing?  no, crimesourcing

and a really important article on how words that we all think we understand the meaning of might not be used the same ways, especially when scientists are attempting to communicate on an issue to “the public”

24 responses so far

Nov 11 2011

Battling the “D” word

there was a death on the floor today. (Oh, and I’m stuck here over the weekend so they can monitor the pattern of intermittent fevers and whether the hip pain gets less and they confirmed they definitely can’t get blood out of my portcath to test it so they’ll be assuming that the fevers are related to either the blood clots or the hip pain and might xray that if it stays the same or gets worse.  Please, please no hip fracture on top of everything else.)  But the death on the floor today had an interesting effect; my problems still seem huge, overwhelming, unfair, with no clue how I’m going to find the energy to get through and heal, and bitterness of missing things like my daughter’s first crawl, and all the things I’ve been complaining about.

But I don’t want people to be hurting over my absence the way I heard the people crying on the floor today.  I don’t know who or how many would feel that level of grief, but I would guess there would be at least a handful, if not more.  So in the end it doesn’t really matter how unfair or overwhelming or draining my own situation is.  I have to keep fighting for my life until I truly run out of fight (and I’ve been close enough to that twice  to know a bit about what it feels like, and we’re not there yet no matter how despairing all this feels).

This situation seems a bit more scary because of the “I don’t know” factor; there’s too many things the docs don’t know about why the fevers came back or what they’re connected to.  I’ve been mostly just zoning in and out of consciousness the past two days; no more stories sent out, no more research done.  Crazy dreams, full of weird symbolism and old friends and parts of them feel healing even with all of that oddness. I’ve lost my appetite, so am trying to drink plenty of water and eat graham crackers so i’m still getting SOME calories.  I’ll find the energy somewhere to keep fighting even with the Idon’tknow’s because fundamentally there’s nothing else do to but to keep putting one foot in front of the other.  I’ll be around for a long while to come partially because you all believe in me.  I thank you for it and ask you to keep doing it.

PS - no one’s given feedback on which wordpress theme they like better from the previous post (except Mom in email), so readers if you’re out there speak up!

PPS — just got preached to, but she meant well.

29 responses so far

Nov 09 2011

rough day…

Revised release day for me is tomorrow(Wednesday), I still feel mostly like I’ve been dragged over a gravel road for a few miles, but it’s an improvement on when I came in, so there’s something, anyway.  I rant here a lot about my loss of energy and stamina, but you’ll have to put up with a little more for a little while. At least it’s not all that.

Sat in a chair too long and needed IV morphine to stop the back spasm after getting back into bed, it’s made the rest of the day extra painful. I still did a walk for PT, and ended up needing IV again later on when the back wouldn’t shut up again.

Thought I’d lost this post when I passed out over the keyboard, but thankfully autodraft save saved the draft-day.  Definitely a crankypants day and seems like I have too many of those on this blog lately, but that is the reality of my life: It’s hard, and a lot of it sucks right now, and I’m superlow on the internal cheerleading needed to have it otherwise.   Ra ra, infection and bloodclots took all my physical stamina away.  So now I’m a horse with a handicap weight, starting behind the start line instead of at it like the other little ponies.  Not fun, not fair, not much to do about it other than the same old soldier through and believe that surely, this time, someone else out there is a target for the universe and not me, and it’s my turn finally for some kind of damn break just for a while, to heal up and get a chance to enjoy my daughter before she’s grown (at the rate shes going who knows? already crawling).  I just need the rest, the break, the recharge, the change from having  badness of such large magnitude be what I get.  Quiet time.  Nap time.  Rejuvenation.  Rebirth phase of the Phoenix.  These are what I”m ready for, what I NEED, far past wanting.  So that’s what I want for Christmas. Preferably an early Xmas present. That and probably some lymphedema sleeves, I’ll know more once I get that appointment to get measured. But really, Santa, a break is all I NEED.

Arrrrrgh, just had another horrible back spasm getting back into bed.  And that’s being careful and everything.  Please, please no more, we don’t have the good quick-acting IV stuff at the house.  Let this just be a sign I need to be home and finishing recuperating there.

On the good side of things, I’ve got 8 stories floating out and about, and only 4 more that I can even try to clean up and circulate (one of which will likely never, ever get published even though all my friends like it because it involves violating two sacred taboos, Santa Claus and children), so It’s about time to start trying to turn the creative juices to some actual new work.  I do have one new project that I’ll be setting up on another blog, so for those of you in the know (or those of you who just want to render an opinion), which of these themes do you like better? Dusk to Dawn or Chateau And hopefully I’ll hear from my visual artist soon on last year’s project so we can get that finished and out into the world where it belongs.  Love to you all!

31 responses so far

Nov 04 2011

weekend links link … sometimes

The more things stay the same…the worse they get.  If we keep backdoor funding these conflicts overseas, how do you expect wars with them to end?  More on how the US funds Iran

Advice for how to write SF for young adult readers

While Medicaid is doing surprisingly right by me, for which I am thankful (and thankful to Mom for helping out with all her help in keeping track of what needs doing there), in other areas they’re not so great, like how many people who qualify for Medicaid-funded abortions actually get them…

Love the title on this one: Why Women Aren’t Crazy — The Good Men Project

and for contrast, sexism is still widely rampant on the internet (and elsewhere)

Why to write — or not write — short fiction

another interesting perspective on the writing process — how to do what you do

really fascinating analysis on writing fantasy, complete with links to other good related articles scattered throughout

and how to write smart — Cath Shaffer with some very good advice on who should be feeling smart when the story is done

Some of the most balanced advice I’ve seen on how to write, circulate, revise, and trunk stories you’re trying to sell.  What are your own rules?/

Another writer weighs in on the the lightning-fast changes happening in the publishing industry, how no one knows the true answer of where we’ll be in that area even as little as a decade from now, and how everyone is experimenting with what should be free, what should be paid for, and what should cost how much in the creative realm of words.  what are your thoughts? what experiments are happening now that you know of or follow? leave a comment with a link here, I’d love to check it out.

For local writing action relevant to the issue-of-the-month, Check out an article written by a local survivor on hereditary/genetic breast cancer.

Do your STI screening — here are what some of the abbreviations mean according to the author:  GSS stands for General Social Survey. The GSS is a huge sociological survey of the US that well-loved by both professional and armchair researchers because its data set is available to the public and they have some basic data analysis tools built right into their site. http://www3.norc.org/GSS+Website/

Please correct me if I’m wrong, but I think the only other missing abbreviation expansion is ACOG. ACOG is the American College of Obstetricians and Gynecologists. It is the professional organisation for OB-Gyn providers, as well as the organization that issues guidance on things like timing of pap smears and management of common OB-Gyn conditions.
http://www.acog.org/

141 responses so far

Nov 04 2011

feeling better?

Published by Reesa under Writing, wonder woman

It’s amazing the difference hearing nearly the same answers from a doctor you have a trust relationship established with makes a difference.  Dr. Rubin de Celis had a chance to stop by today and I didn’t really ask him significantly different questions, but I know he would tell me the truth if this was a major setback or increased cancer risk or anything worrisome.  And he agreed that he would tell me if there was anything like that, but that these were fairly normal side effects and complications to have even in someone who was just having the mastectomies and hadn’t had everything else to deal with.  It just took away so much more ability and stamina from my body because it was an infection and multiple blood clots on top of double mastectomies on top of chemo just 5 weeks prior to the surgery and the chemo and radiation together before that and the radiation and oh yeah, the having the baby bit in there.  He did say the tamoxifen might be  increasing the blood clot chances a bit and definitely increased the propensity for crying, and that sometime probably next year when I’m actually fully healed from all those other things and have my ovaries and uterus out he will them switch me to one of the newer tamoxifen-like drugs that has much less chance of causing clotting.  But he reassured me that these clots might end up in my lungs but not my brain, and that we will see slow but visible improvement over the next several months in my arm even though I’ll probably always have some lymphedema to deal with, that none of the scans they’ve done show any new cancer; that some of the hardness in my chest is my ribs, which I couldn’t feel quite that well before; that there’s every reason to believe that I’ll keep getting healthier from here as things move forward, and that we can even in a month or so start talking diet so I can have closer to the body I recognize as “me” back and not this bloated thing from steroids and fluid retention that I don’t even recognize as me in the mirror.  I touched up and sent back out three stories that were already written before this summer and just need to be circulating around.

So that’s mostly good, and hopefully I’ll see him again in the morning and will feel much better about all of this by then.

4 responses so far

Nov 03 2011

Still here…

This is the first day I’ve felt not like complete worn-out mud since getting here, strange since I had a CT scan this morning and an ultrasound yesterday morning.  My left arm continues to be swollen to horrible proportions and has very little mobility.  This is reversed from right after surgery, where my left side (which had less work done on it overall) was much more functional.  My right side is now the more functional side but that’s for very loose definitions of the word functional.  They’ll be keeping me here until my 10 day IV antibiotic treatment is done for whatever infection is somewhere in my body.  They still suspect the left side, either around the port, where the hole and drainage is, or where the blood clots are.  No really straight answer why I’m suddenly having multiple blood clots; it could be from the surgery, the tamoxifen, or some other source.  I still have the blood clot (pulmonary embolism) in my right lung.  I’ve been on oxygen since I’ve been here.  I’ve put in a couple of calls to talk to my medical oncologist, the one I’m always singing the praises of.  I feel like I need to hear the answers to some of my questions from him, as I trust him to play straight with me and let me know if these are just long-healing complications of a ridiculous medical situation all around or signs of something more concerning.   The infectious disease specialist seems to know his stuff and I believe him when he says he’s been in contact with my MedOnc and my surgeon. I still feel like I need the emotional reassurance of answers from a doctor I’ve spent time establishing a trust relationship with.

This in some ways has been worse than the cancer stay earlier this summer.  I’ve had far less visitors, so felt much more alone at times (my mom — good for her — did her own prophylactic mastectomies so she’s been unable to do the regular visits that I was enjoying from her).  Our live-in helper doesn’t have too many errands that bring her this way so I haven’t gotten to see my baby as much.  The Teen is upset at me being back in here and understandably is conflicted about visits.  Having infection (possibly on top of the flu a couple of weeks previously) and difficulty breathing has completely wiped out my stamina that I had built up through my daily PT.  I’ve mentioned it before, but despair is desperately hard to fight off when it’s one step forward three steps back.  Questions about why to keep fighting, to keep going, to keep writing, to keep anything start creeping in even when I know better, even when I have family and writing and all the same reasons to keep fighting, it’s gets harder and harder and more and more draining.  I need something to start picking up; going right; a sign that it’s not all just going to keep staying low.

I can take some secondary pleasure in others’ successes; I’m proud of my husband for finding one of his dream jobs, doing well at it, already getting a raise not too many months into it, and proving himself capable of the job.  But those are his successes, that he’s been waiting ages for and are his to fully enjoy now that he’s finally getting them.  It doesn’t lessen them at all for me to be able to applaud his success and still feel down about my own downward trend or holding pattern at best.  I’m super-pleased that he’s finally getting the kudos and rewards he deserves for the years and years of hard work he’s put in.  My mom had some early complications with her surgery but it’s fixed now, and she’s on the mend, and now out of the massive danger zone for getting the kind of cancer I had.  I’m in the hospital again, but it’s not for cancer, I’m still scanning clean for that with all these extra scans they’ve had to run.  So there’s a lot of things that objectively aren’t as bad as they were last time I was here.  I’ve had MUCH less problems with the pain management regimen and that’s been a huge blessing since if I’d had to deal with that on top of everything else I don’t know how I would manage.

But (TMI alert) my functionality has been almost completely wiped out.  I can’t shower on my own (I could before I got the infection, even though it was hard and hurt and took a long time).  I need assistance to clean myself if I have a bowel movement; my arms are limited in function enough that I can not even do that properly, and I’m sure readers can understand how embarrassing that is.  The fold of hip and stomach is having some skin breakdown issues (possibly relating as far back as radiation therapy).  Those of you with large breasts can understand my disappointment there, as I was looking forward to not having to worry about skin fungal issues after the large breasts were removed and no longer held moisture underneath the fold.

I don’t talk about all this to gross people out, though it does feel yucky and embarrassing; I talk about it because people don’t.  Talk about this kind of stuff.  and I suspect at least one or two of you are interested to know the less pleasant side, why the feelings of downness and despair come so easily when I jut beat cancer for the second time.

For those wondering about the results of the scans: the ultrasound and the CT both show blood clots in the left arm as well as the right lung.  I’ve been told that there aren’t good ways to treat this other than putting me on blood-thinning drugs and letting the blood clots slowly dissolve away by the body’s natural response.  Apparently a large pocket of fluid on the left side is gone, even though we haven’t been purging or massaging that area, so the infectious disease specialist seemed to feel this as a good sign of the body taking care of the fluid on its own and able to take care of the rest of the problems.  I’ll report more if I get a chance to talk to my MedOnc doctor, as again I trust him to give me non-sugarcoated answers.

I’ve gotten more rejections from the stories I sent out that  I wrote before the second cancer round.  Normally rejections are just part of the deal, but I’m more upset about those than usual as well.  Even making it to the personalized rejection part of the process isn’t a consolation.  At this point I’d sign up for a writer’s workshop like Viable Paradise, but of course won’t have the stamina and energy to do that for a quite a while, so will have to keep attempting to improve my work on my own/with the help of my editor and writer’s group.  I still feel like I have a handful of stories that I just haven’t matched to the right market yet.  I know that a story sale would energize me quite a bit on that front, so just have to keep trying.

I hope most of my Faithful Readers are having a better time out there than I am.  I do have one project that I’m continuing to enjoy and not lose steam on, so be looking for something new from me in the near future.  A Halloween launch would have been perfect but once again, lack of energy gets in the way of best intentions so you’ll have to be content with a less auspicious release date.  Feel free to comment on the content in this post, but I’d particfularly like to hear about good things happening your way lately.

15 responses so far

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.

11 responses so far

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.

20 responses so far

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