Archive for the 'super-baby' Category

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”

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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!

9 responses so far

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.

2 responses so far

Sep 16 2011

Another day, another doctor appointment

They really are weekly, during these early days of crisis and post-crisis and establishing baselines and new routines and mapping out how the rest of, well, my life will go, really.  It won’t always be this frequent, but it seems like it right now sometimes.

This week I saw the surgeon who performed my mastectomies, considered by many to be the top surgeon in the hospital, (how cool is that?) which probably explains why he gets to wear cowboy boots to work and play country music during operations, according to the nurses.  That appointment I already talked about in a previous post, so you’re more caught up than I thought, Faithful Reader.  I’m getting back into this blogging thing better than even I knew, heh — I’m repeating myself.  Tuesday was a long day; in addition to the at-home nurse visit provided by Medicaid, I had a several hours-long doctor visit with Dr. Rubin de Celis.  We have more CT scans scheduled for next week; according to him, these will be the truely true baseline scans.  The previous ones were to see where we were at, once all the chemo and radiation had been done, which showed us the four liver spots and the remaining breast tumor.  The breast tumor is gone with the surgery; there were two active lymph nodes out of the five removed on the right side.

According to de Celis, this doesn’t change anything in our plans so far, as they also took the inactive ones surrounding the active nodes to get clean margins.  It does mean that there could be cancer cells flowing somewhere in my body, waiting to attach somewhere and start growing again.  It also, since those active nodes were surrounded by dead cells, could mean that they were remnants of some of the largest liver tumors still in the process of dying off from the aggressive chemotherapy regimen I was on.

So it’ll be two months since the last chemo treatment when we do these scans next week, and that’s long enough to know what lingering effect, if any, the chemo had on those liver spots.  If they’ve stayed the same, or gotten smaller, we’re happy; that’s what we want to have happen.  I’ll get put on tamoxifen, an anti-estrogen medication, next week as well, and that is supposed to do the job of keeping those spots stable or shrink them, like we want to have happen.  I’ll get scans every two months while staying on this drug essentially for life, given the aggressiveness of my cancer.  (We’ll of course be watching the other previously affected body parts to make sure no new cancer springs up in addition to watching those four spots.)  Stay the same or get smaller (or go away), we stay happy. The only long term side effect to worry about with tamoxifen is leg blood clots, so as long as I stay active, get back with PT and exercise as I’m able to do, and keep my body otherwise healthy, I shouldn’t have to worry about clots.  As long as the tamoxifen works and all the radiation and chemo worked as it should’ve, then I stay in a remission-like state and live my life and do ambitious and wonderful things as I plan and live with my family and enjoy my friends for the all the years to come that we all expect to get when we plan out our lives in blissful ignoring of death’s shadow.

We’ll also stay on the Aridia, as I’ve mentioned before, to help repair the osteoporotic-like damage to my bones that happened with the metastatic cancer.  I just got my monthly infusion on Tuesday; the ironic side-effect of Aridia is bone pain, and I suppose it’s a good sign of sorts that my other systemic pain has gone down enough to be able to feel the bone pain specifically this time around.  It is not a fun barrel of monkeys; it is a lot of mostly back pain, mostly where the tumors were, and paranoia-inducing as a result.  I’m also back to sleeping just on my back after having halfway re-trained myself to side-sleep, thanks to the mastectomy surgeries, but of course that will also eventually heal up again.

My dad and step-mom are visiting this weekend.  It’s been wonderful having family visit so regularly and be so supportive.  I wish they lived closer so I could have even more of that.  We’ve also got a really great community here in Austin, it’s been great to see my husband taken care of with near-weekly gaming and dancing with his friends to relieve some of his stress, as he adjusts to a high-stress-level new job doing a bunch of things he’s been wanting to do for years and getting paid (close to) what he’s worth as well to do it.  We don’t get the time together that we’d like, but that like everything else will repair itself over time as things heal on all the different fronts there are to heal.  It makes it challenging to find time for me to get back into my part of nurturing all the different aspects of family care on the home front, and for being a cancer-and-surgery-recovering currently disabled person, I think I’m doing darn well.  Having the live-in help helps, quite a bit.  We’ve had a couple of hiccups with her car having troubles but it sounds like we’ve finally got a handle on fixing that up so it won’t keep being a problem, which is a relief.  I still manage a date night nearly every week with the husband, even if it’s just spending time together watching a movie or series and quietly enjoying each other’s company.  I help The Teen with his homework and help manage the onslaught of his Teen Angst, and can feed and even sleep with Super-Baby with a bit of positioning assistance.

***

I still don’t feel like I have enough time to cry.  To hold my daughter (or my son).  To sleep.  To write.  To spend time with husband or friends.  Time seems to be one of the commodities that slips through the fingers like sand as one convalesces.  I found out that one of my friends lost everything in the Bastrop fires, and yet again I’m invalid enough not to be able to go help out the way I want to (though at least this time I can offer a shed to rummage through for usable stuff, and a bit of kid-care by way of volunteering our helper lady, so better than nothing).  I’m so tired, and there’s so much to do, and I’m doing so much, and the task list just gets longer each day.

I’m supposed to have a scale, which I’ve never owned, to track daily fluid weight, as we wean me off the steroids I’ve been on for the past several months.  I’m supposed to start wearing lymphedema sleeves again.  These are super-expensive, I’ll have to check to see if Medicaid covers those, though I’m sure they’re the ugly beige type if they do.  I’ll put up a wishlist for some more stylish ones sometime soon, in case anyone feels the urge to give a good and useful gift.  (I have several gorgeous gifted head-scarves I enjoy wearing when hubby and I go out or I feel like dressing up.)

It feels like something new wants to be written but nothing has shown up yet.  So I will continue to slowly send out old stories (did I mention I had done that, on a couple?), slowly clear the desk, and perhaps as I do so the new things will begin appearing.  If I am to live this life to the fullest it is meant to be, then there must be more stories, new stories, moving and delightful and entertaining stories from me to you.

And so there shall be.  So send good thoughts and prayers if that’s your thing (I’m a non-denominational well-wisher accepter), encouragement and excitement for more stories, rub my bald head for health if you see me (my son is good at keeping this up), send love…and go out and live your lives fully, fiercely, and beautifully, so that daily we all spit in the face of death.

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Sep 13 2011

rough week, sloooooowly improving

Well I took a short break from PT these first two weeks post-surgery; I just couldn’t make myself keep getting up and pushing physically when I was already pushing mentally and emotionally to heal, heal, heal, keep watch on house management, help The Teen figure out a better after school strategy in the midst of a surge of attitude and angst, hurt hurt hurt, figure out writing kickstarts, wait for shoes to drop, heal and hurt, hurt and heal.  It probably wasn’t the best choice; keeping moving and exercising really is one of the better and faster paths to health, but I just ran out of self-push on that front.  Spent it all elsewhere.  I’ll be slowly starting back on it this week, but carefully, of course.

Today I went into the surgeon’s office for a follow-up, and of course, not as fast a healing as I’d like.  Well, I was warned about twice the healing time for this, plus less activity I’m sure hasn’t helped.  But there’s nothing terrible happening, just slow healing.  I had half of the staples removed on half of my right side (heh), and half of the staples removed on all of the left side (every other one).  I was told that it’s looking really good, even though it’s still producing quite a lot of fluid and is swollen, so none of the four drains came out. (A mixed blessing; it would be nice to have healed enough for drains to come out, but as I recall, that hurts, quite a bit.) I actually think one of my JP drain suction cups has a leak somewhere (based on something that happened tonight), I’ll get them to take a look tomorrow.  I have another follow-up a week from today with this surgeon, I expect at that point I’ll get at least half the drains out and switch from staples to surgistrips.  He also told me to use hydrogen peroxide on the drain openings, which continue to hurt more than most other places on my chest (the swollen areas under my arms are a mix of numb and big hurting).  The backs of my arms are also really painful and swollen, so we’ve been wrapping them to try and keep the fluid draining out and toward the center of the body.  I have gained by far the most weight and am the heaviest I’ve ever been, due to the summer’s inactivity and the steroid drugs I’m on; however the good news is I’ve already lost 30 of that in the last two weeks (mostly fluid, though 8 pounds of it was breast, hehe).

I have another appointment tomorrow, this one a big one with my favorite oncologist, the fabulous Dr. Carlos Rubin de Celis (for anyone looking in the Austin area, I’d commute to follow this guy and keep his services, that’s how good he is).  I get some lab work done, I think we’ll be scheduling some scans; it’s time for the monthly medication renewal so we’ll also be discussing that.  I had been starting to ramp down on pain meds but the surgery pushed me back up to where I was, and in fact I’ve been using a few more of the pops than before.  I think it’ll be ok; he trusts me to pay attention to my body and tell him what’s going on, and I trust him to listen and help me change and stay on top of things as needed for best pain management; it’s a good arrangement.   We have a plan for how to affordably start me on tamoxifen (an anti-estrogen drug) that we’ll be discussing tomorrow again to make sure it’ll work the way we think it will.  I’ll also be receiving my next Aridia infusion.  This is a bone treatment that he says I’ll be on once a month for the next two years at least.  It’s designed to both prevent any future cancer encroachment into the bony areas that were previously affected by the metastases, as well as help assist in the healing of those areas previously damaged.  I’m not sure about how Aridia itself affects my body, side-effect-wise; I probably won’t have a clear picture of that for the next couple of months as it’ll be all mixed up in the mastectomy healing process, but I’ll keep reporting what I notice, when I do.  I’ll learn more about tamoxifen side effects tomorrow as well.  A walking pharmaceutical package, that’s me for the long term, I guess.

Realistically, I’ll ramp down from the pain meds over time, we hope; the damage is still very much there but there’s good reason and hope to believe that it will lessen over time even if not go away entirely.  My mom and I even came up with a clever solution with the help of a nurse for weaning off the pops when the time comes. (I don’t have an addictive personality, but recognize that habitual behavior is its own thing, so I’ll switch to mini tootsie pops or dum-dum pops when I feel the habit but don’t need the drug.)

(TMI warning) One concerning side effect that continues is near-incontinence; I have a much shortened time warning on when I need to urinate, especially when waking up.  This is likely from the radiation, and the RadOnc believes it will fix over time; she says that for those whom it’s permanent damage, it happens during the day as well.  While I’ve had it happen during the day, it’s always when I’m concentrating too much on things like writing, and ignoring the early signals.  If I don’t ignore the signals, it’s not a problem, so the daytime stuff is my own fault and I just have to wait for the nighttime stuff to heal itself over time.  There have been very few accidents thanks to the bedside facility, several close calls and only a handful of missed ones.   (Tonight for example, woke up fine and no misses! yay)

I’ve also had some radiation recall come up, which is skin irritation and/or discoloration (in my case definitely irritation, bah) that is exacerbated by the time spent in bed, so that will hopefully lessen as I get up and moving around more again.  This most often happens when you have to have extra radiation treatments, which if you recall I had to get a second round of 20 radiation doses while on chemotherapy, a scenario they try to avoid when possible due to just such side effects but which was necessary in my case.

This coming weekend links post has some cancer ones in there.  I don’t like to think about the death aspect of it, how close that sits over my shoulder, even though realistically I know that death sits no further away from any of us, really. (Wildfires, car accidents, random violence, anything can snap out that light much more immediately than what I’ve fought off twice now.)  I hope that my loved ones can all continue to treasure my presence and what I give to their lives by being in it; the more I heal the more I have to give, the more I love to give.  The healthier I am, the more I can do and the happier I’ll be, and I hope my friends and family can believe in me along those lines, that you are all so important for me to have and hold and love and lust for and live for.  It’s been a vicious and long road, with no promises there won’t be future sharp rocks along the way, but I’m passionate and dedicated to the ones I love and I WILL keep climbing those rocks.  I look forward to feeling your supportive presences alongside me as I do so.  Patience is one of the hardest traits to keep hold of during these crises and healing times, and sometimes even I want to scream   at the universe for a fucking break already.  Having you there with me makes such a huge difference; even if we’re screaming at the unfairness of it all together, that “together” is what makes it so much easier for me to keep going, keep healing, keep surviving, keep thriving.

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Aug 29 2011

writerly triumphs, upcoming cancer fears

I’ve been nearly-steadily working on getting my creative well refilled after beating back death (again, from a fiercer battle this year than last), so the good news progress on that front is:

I made it to a few parts of ArmadilloCon this weekend. Friday was a disaster and life lesson two-by-four all in one; I tried to essentially go by myself (with walker strapped to wheelchair), and didn’t realize just how hard it would be to push myself around, especially since the hotel had far more carpet than I’d expected (I’d remembered large expanses of tile, which there were in main areas, but not where the panels were held).  I managed to make it through one panel simply due to stubbornness of will, then found a friend who very kindly took me home.  At home I cried in frustration and felt nearly sick from the exhaustion, and bitter about not getting to do any of the things I want to do, and upset that my “last hurrah” before surgery was such a bust.

Waking up Saturday in a better mood, I spent most of the day napping and late afternoon my brain kicked in, and we worked out a solution where my helper used the front carrier to strap on Wednesday (who was apparently a big hit at her first con) and go with me to push me to panels.  We arrived late enough that I was only able to attend two more panels, but at that point it was the principle of the thing and I saw friends and took notes and went to panels just like a real convention, my first since this time last year.  Psychologically it was a big success, and of course I’m exhausted and sore and spent most of the day in bed and will spend most of tomorrow resting (with maybe a bit more movement and PT exercises that I won’t be able to do right after Tuesday) but quite worth the effort and I’m grateful to my Mom for providing the badge fee and my helper and another two friends for providing the rides to get me to and from.

I did a “create first lines” exercise with my writing group that was fun for me and seemed so for the others who participated.  I even wrote a couple that tickled the glimmer of possibly an idea for story, maybe, somewhere in there.  So that was a success as far as I’m concerned.

One of the next steps as I see it is to get back in the habit of the “send stories out — collect rejections — send them back out” routine I’d been doing so well at last year, so I asked my writing group which stories of mine that I’ve previously submitted for critique came first to mind as ones they’d like to see back out circulating.  Two of the ones they suggested are ones that have been out there already for months, so I sent queries out on those two, and at least one of the others they mentioned doesn’t really need further editing at least at the moment, so I am planning to find a market and send it out tonight (unless, of course, I fall asleep over the keyboard first as I sometimes still do).

I may have come to a decision about the novel I’ve been slogging over for years, which I think deserves its own blog post as possibly an interesting writer-process blog entry, and I’ve identified two characters from other stories that I think will be the easiest to start back on trying to write when I finally start generating new creative content.  I even have great encouraging words on those from that same writer’s group.

And then the anger and frustration parts:

I’m just now starting to get to where I can do more than one or two things a day without being wiped out.  I mean, there’s no way even a couple of weeks ago that I would have been able to try again on the con attendance like I did this Friday and Saturday.  I can’t get a straight answer about how my doctor is going to handle my pain med regimen when I go back into the hospital for surgery on Tuesday and it’s been working so I’d really like to not have to go backward on that end of things.  I’m angry.  I make the joke about having to get three mastectomies for two breasts but it’s not really funny, except in the life irony sort of way, it sucks. I trust my doctors this time but I’m still so scared.  So scared.  And admitting that in front of the world and everyone is hard, even if it’s a no-brainer, because I’m also the strong, beautiful, determined, fighter, role-model, hero, STILL ALIVE person that people talk about in the comments you leave here and tell me elsewhere.

But this is so hard.  So very very hard.  And scary, and angry-making, and I don’t want to do it even though it’s right and necessary to do.  And I wish I had more time to heal and enjoy the energy to write and help The Teen with his homework and feed Wednesday rice cereal messy-o-meals because on Tuesday I have to slog back from the edge of the abyss AGAIN in order to be able to do those things and I won’t be able to right away, and what if it takes long enough to heal and my baby girl grows fast enough that I’ll never get to safely hold her again because she’ll be too heavy for my arms to safely hold?

And I can heal, and I will, and I’ll even try to write about it so you know what it’s like as best as you can from reading about it.  But here I am, bloated enough from bed-rest and long-term steroid meds that I don’t look like me in the mirror anymore, emotionally naked, and the fear is so strong that writing it is the only thing that makes it smaller.

Caging it in words to show for you like a zoo exhibit gives me some iota of illusory control over the process, so here I am, and here it is:  I go in for double mastectomies this Tuesday, at 1 pm CDT, surgery expected to last 3 hours.  On the right side they will also take several lymph nodes along with the breast, and the remaining cancerous mass that has shrunk through chemotherapy to 2 cm from its previously baseball-sized visible lump under my arm.  The left side will be cleaning out the far-too-much breast tissue they left from last year’s mastectomy, though they don’t expect to have to remove any more lymph nodes.  They will be removing every bit of breast tissue they can find on both sides.  They do not expect to have to remove muscle, so send good energy that way if you have it to spare, as I would be left with lifelong arthritic-like symptoms if they have to take any of the muscle in the area, and the lymphedema brings enough of its own long-term side effects that I’d really prefer no more added to the mix.  They expect, given how close this is happening to the recent chemotherapy and other factors, that my healing time will be double the normal expected rate –so at least 12 weeks of active healing — and that doesn’t count the months of PT to get as much back of normal movement and function in the area as possible.  And that there will be at least one night spent in the hospital, but possibly more depending on how my body responds; so soon after a 9-week stay in the hospital, that in itself seems discouraging.

I have no idea how much, if any, it will set back the progress I’ve made in getting back my writing creativity, but I expect at least some.  I may have a baby 3-pound netbook, but I recall from last year even that was too heavy to manipulate for the first several days after surgery.  So expect a pause in blogging, though you might see me update on Facebook since I can do that from my phone.  I have a voice recorder I’m going to try to make sure is functional tomorrow as part of packing and prepping for going back in, in case I do manage to snag writing ideas out of this mess.

So the positive thoughts to send my way are: all breast tissue gone, no muscle removed, and speedy healing with no complications.  I’d really like some time and space to live this beautiful life with you beautiful people that surround me, and enough pain-less (not naive enough to say painless) functionality to enjoy it as fully as I know how.  And that’s pretty damn full — there’s nothing like two fierce battles with death to enhance the joy of living life.

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Jul 06 2011

When babies attack

Not really, the baby is great!  I’ve been promising a baby post, however, and so I figured that title was a good attention-getter.

We have been incredibly fortunate to get a baby with a personality that nearly perfectly compliments the other much more difficult circumstances we’ve been having to deal with, especially the cancer.  In her first three months, she has been consistently the calmest, most content, peaceful, quiet, and happy baby I’ve ever met.  I’d write myself off as one of those parents who can say no wrong about their darling little angels, except this feedback is the same that we consistently receive from everyone else who meets her as well.  Not to mention that she’s an amazingly gorgeous baby; the nurses all find excuses to visit when she’s here.  Even the wonderful and skilled hospital pediatrician in charge of our girl’s first few days of life, Dr. Kent, found reasons to stop by and get some visit time outside of the necessary check-ups.  (She was also one of the first people to encourage me to keep blogging about my experiences, and I thank her for that!)

It’s only been in the last couple of weeks that the baby has even started to have fussy periods regularly as her brain develops more complex needs for expression before the rest of her can keep up.  This is a fascinating process to watch, even if I’m not getting to see it every day like I’d prefer.

We couldn’t have survived the last month of taking care of her without my awesome mother, who’s been carting her home each week, making sure her needs are met, and bringing her back each week for visit and assistance time.  There aren’t thank-yous large enough to cover what Mom has been doing for us on this, but try to imagine them anyway.  Mom confirms we have the world’s best behaved baby, and is having a fun though exhausting time.  It’s also hilarious to look at old pictures of me and see how much she looks like I did at her age — there are a few pics where we look almost like twins!

As we get closer to me being able to go home (and more on that in other posts), we’re looking for more full-time/live-in help for both me and Wednesday (our daughter) and have posted an ad to that effect various places, so if you know someone in the Austin area good with cancer patients, infants, meal prep, errands, and other such goodness, send them a notice our way.  And to wrap up, here’s the story of Wednesday’s nickname (and middle name) for your entertainment…

While the little larvae was growing inside me (and unfortunately triggering the estrogen surge that potentially caused the metastatic breast cancer — it had been mis-diagnosed as non-estrogen-receptor positive tumors last year), we wanted to call it something while we didn’t have an actual name picked out.  As far as television families go, The (original) Addams Family is frankly one of the most loving and well-adjusted ones I’ve seen depicted (seriously, think about it for a few minutes and you’ll see my point — feel free to discuss it in the comments!)  So we figured we’d call it after whichever Addams kid it was gendered until we had time to find a better name, and so Wednesday she became once we knew it was a girl.

Around the sixth month or so, my husband mentioned to me that he actually sort of liked Wednesday as a name.  I laughed and agreed that I liked it too, but said that it was probably just a bit too odd to hang on her as a first name.  I pointed out that we could totally keep it as a nickname, or even a middle name, and we continued slowly winnowing down a list of other more suitable first names. (We thought we had three more months to decide at that point, of course, so weren’t in much of a hurry.)

Thankfully by the time things had gotten really bad pain-wise and we suspected something besides being pregnant was wrong with me, we had narrowed the list of possible actual names to a manageable page of choices.  We were still quite irrationally attached to Wednesday as a name, though, and so I suggested we test out the names to see how well they fit with “Wednesday” as a middle name (since the option to keep it as a nickname was always available regardless).

Then the pain got so bad that we had no choice but to take me into the hospital (the first time around) and find out what was wrong. (At this point we still mostly thought it was something structural since it was so much more painful than the first round of cancer had been and since “hip pain” happens to many pregnant women — though I knew in my heart that hip pain that bad had to be something else, or at least something more than just pregnant complaints.)

They did the MRI and found the hip tumor (along with several of the other tumors — they found more later with other scans once she was birthed) and suddenly the message changed from “we’ll have to wait a couple more weeks to term” to “we have to get this baby out and deal with these tumors”.  Since she was already at 36 weeks she was viable and we could reasonably hope that she’d developed enough that she wouldn’t have too many health problems being a month early.  That Tuesday evening we spent discussing the options of vaginal vs c-section birth given the incomplete information we had, and were going to wait until the morning to consult with the oncologist assigned to the case before making a final decision. (Dr. Carlos Rubin de Celis, best oncologist ever ever ever, seriously if you’re in the Austin area and need one he is amazingly skilled as well as compassionate, if I had to move away I would commute back to keep him as my doctor I’m that pleased with his abilities.)

At ten minutes to midnight, I coughed twice and my water broke, gushing in a veritable flood for what felt like half an hour as our darling daughter chose to help our decision along herself and no more of this dilly-dallying about.  And at 7:08 am, on a Wednesday, she was born.  Given that, and all the rest of the events, we felt that was the perfect middle name for her and quickly picked from the last three choices we’d narrowed down for the rest of her name.

Several family members and friends still call her by that, which we have no problem with as it is indeed one of her names, and we’re fond of the story behind it.  When she gets old enough she’ll be perfectly capable of expressing her own preferences in that regard.  Given her mouthful of a moniker, she has over half-a-dozen options for names and nicknames she can go by and I’m looking forward to seeing how she makes (and changes) that decision throughout her developmental years, as I believe it’s good for a kid to have a name they can get creative with in self-identity.  We also went with the “Nielsen Hayden” option of two un-hyphenated last names, and both the birth certificate and the SSA office did it correctly, surprisingly enough!

She was crying with full-powered lungs as she was removed from the uterus by c-section, and had only a bit of jaundice to deal with for 1.33 days while she was with me in the hospital, and is otherwise one of the healthiest, happiest, and prettiest babies you’ll meet.  I look forward daily to seeing how we’ll change each other’s lives by our mutual existences.

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May 09 2011

My First Mother’s Day

Well here’s a quick mostly-non-cancer post before we get back to the regular news…

This weekend was my first official Mother’s Day celebration, as last year we hadn’t received custody of The Teen (until my birthday about a month from now). It was certainly bittersweet, given the whole dealing with cancer thing affecting my ability to be mobile and do things, but the sweet won out even given the emotional downness and complexity of this time. Nathan’s mother and stepfather were in town visiting and I think that helped the guys remember to celebrate Mother’s Day (though I could be wrong and they would have remembered anyway).

I received the very thoughtful and lovely gift of silky lounging robes, four of them I believe (might have miscounted, could be five). Since I’ll be heading into chemotherapy land, which is unknown territory impact-wise but likely to affect my energy levels from day to day such that lounging will be most all I’m good for some days, it’s a useful gift. But they’re also bright and vibrantly patterned and silky to the touch, so they’re a feel-good gift as well. I also like having the baby get to be near things that feel nice to the touch, so added bonus there. All in all a much more well-rounded and thoughtful gift than I was expecting (since I wasn’t actually expecting much at all). I love my family!

I also got a framed painting that Nathan’s stepfather did of The Baby which is fabulous (Pat Cardiff is a great artist); my mom now wants to commission one from him of the baby plus me, so we’ll see if he’s interested in taking that on. And a funny Mother’s Day card from The Teen. I didn’t get to spend much time with Nathan on Sunday, as he was doing his own thing most of the day, but we got to go out Saturday night and shake booty for our date-night which is always nice. (Well, I watched my pretty man dance while I stood in place with my cane and wiggled my butt in-between sitting spells, but we modify as we need and do what we can to still have fun during all of this — and I think we’re succeeding better than most others would at keeping some semblance of “normal” existence.)

Nathan’s folks had to leave early-early Sunday morning, but my mom came down later Sunday and we let The Teen stay up a bit late with us to watch all three Sherlock episodes (which my mom hadn’t seen) with friends Andrea and Robert, which was a good and fun shared low-impact activity. Since I’ve been having massive hip instability and extra pain the last few days low-key was a good key to bring in the weekend on.

The baby is only .5 inches longer than at birth, but has gone from a birthweight of 5lbs 14 ounces to 8 lbs 12 ounces in a month, thus reaching what probably would have been her birthweight if she’d gone to term. I don’t mind the smaller package, especially since we escaped any of the health problems associated with pre-term babies — it extends the time I can pick her up and carry her around. She continues to be the most amicable baby it has been my pleasure to know, not fussing unless there’s a reason for it (food, diaper, comfort) and calming down rapidly when she does get fussy. She also is mostly fitting her sleep schedule to mine, as much as is possible I think, which is another huge help. Yay for easy babies! Although speaking of, she’s fussing now, so this concludes your family post for the day.

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Apr 09 2011

Big News; Bad News; Baby News

This blog will be resuming, probably this week. There’s a lot to write about, most of it scary and not-good, unfortunately. But the good news first:

We have a new daughter! She was born by c-section at 36 weeks, so about a month early (counting months in 4-week intervals). She had no major negative side-effects from the early arrival, and is just about perfect in every way that we need both now and in the weeks and months coming up. There is one superpower evident already, as even people who don’t like babies think she’s sweet and adorable. She is the best-tempered baby I have ever seen (and I’m not just saying that because I birthed her), so far only crying when there is an obvious reason to be upset (dirty diaper, hungry belly, cold). She was born on 3/30/11 and passed her first week of weight loss and back into the gaining zone while still in the hospital, weighing more now than she did at birth (which was 5 lbs 14 ounces). She came out a full-length baby at 19 1/4 inches long, so it’s quite likely she’ll take after my husband’s lean and long side of the family. We’ve been having fun looking at my own baby pictures as there is a strong resemblance between how I looked like then and how she looks now.

We did not stay in the hospital for nearly two weeks because of the pregnancy and childbirth, however. (Bad News Alert) I have cancer again. The breast cancer has metastasized (yes, even though there were no signs of metastasis last year) and is in much more scary parts of the body now. This is also the source of the extreme and excruciating pain that sent me into the hospital two weeks ago. At least we know why the other treatments weren’t working to take away the pain, and we have a plan of action to start working on this new phase.

So stay tuned to this website and blog for more posts detailing what we’ve learned in the last couple of weeks, as well as more details about all parts of the new cancer experience and of course, baby news!

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