Archive for the 'parenting pondering' 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”

2 responses so far

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.

Comments Off

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.

Comments Off

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.

One response so far

Nov 19 2010

Deconstructing “Good Parent Mistakes” article

Cracked.com, that bastion of factoids in little bite-sized digestible doses, has an article up about the “7 Things ‘Good Parents’ Do to Screw Up Their Kids“. I disagreed so much with this particular article that it gets its own post, where I shall rebut most or all of their points with phrasing I think more accurate.

7. Giving Your Kids a Creative Name
should be
7. This Point Is Yet Another Attempt to Spread Subtle Sexism and Xenophobia

The article claims that “kids” who have “unusual” names are more likely to commit felonies as adults, etc. One, the “unusual names” they mention have at least two that are not that uncommon — in other cultures. Don’t give your kids unusual names, folks, they might think they have something in common with a global community instead of just the neighborhood kids! (That was sarcasm.) The second concerning point to consider here is that people have been giving females unusual names for a while now, and last I checked they are just as much a part of the workforce as males. But strangely, this point, while mentioning “kids”, “adults”, and “workforce” only uses male name examples. How tiresome!

I come down on the side of giving kids names that THEY can mess around with in terms of shortening it, nicknames, wacky spellings, etc. Don’t give them a “creative” spelling of a traditional name yourself, and don’t try to be too clever. Go ahead and put some effort in to avoid names that will be obviously and instantly made fun of by nasty-minded peers, but don’t overly worry about that either — peers can be more inventive in their nastiness than you can likely guess ahead of time. Giving your kids the self-confidence to withstand name teasing is probably far more useful parental effort than worrying about whether the name you picked out is too weird.

6. Teaching Kids to Be Themselves
should be
Don’t Teach Your Kids One Side Of Anything

Really? This point seems to imply that peer pressure is the main or only way that kids learn accommodation and making compromises. Um.

There’s nothing wrong with teaching kids it’s okay to follow their own drum and resist going along with the crowd just because the crowd does something. (Though I understand why that attitude is threatening to the current dominant paradigm.) But “good parents” aren’t going to stop with that lesson. Empathy and compassion are just as vital skills to learn for getting along with groups of people, and those are skills best taught in the home and larger social environment of the child — not just at school. Going along with the crowd without question through peer pressure doesn’t teach a kid compromise, it teaches them not to think.

5. Making Kids Play Sports
should be
Don’t Ignore the Pressures (and Needs) of non-Academic Subjects

This point focuses on the endemic cheating in many members of athletic programs. Sure, forcing a kid into a sport they don’t want to play is asking for trouble, and not just of the cheating kind. But this point mentions neither how you handle a kid who has a genuine calling toward a sport (back to teaching ethics in the home again, gosh that sounds like work!) nor the need for kids in general to stay active in some way for physical health. For the latter, there are plenty of physical activities that don’t involve the level of competition or pressure that many school-level sports have. And recreational sports are another way to get exposed to group dynamics that isn’t home or normal school, so worth incorporating if carefully assessed and chosen.

4. Starting Them In School Early
should be
Don’t Start Your Specific Child Too Early

In general, I actually agree with this point. I think most kids need to get to the point of being physically able to sit still and hold focus for extended periods of time before they’re required to do that in school, and the average kid isn’t likely to reach that point before 6 or 7. But bell curves have outliers, and this blanket statement is no more universally true than believing all kids should start at preschool. I think there should be more available options to parents for both homeschooling a kid longer who isn’t ready for the larger social swirl, and for starting a kid early in external school who has mastered the grade-level-appropriate basics and who needs or wants the extra stimulation of a different learning environment from home. And again, “good parents” will make the effort to monitor their child for anxiety issues resulting from such choices, and make needed adjustments accordingly.

3.Warning Them About Strangers
should be #6 again,
Don’t Teach Your Kids One Side Of Anything

This point mentions that most crimes affecting kids are committed by someone they know instead of a stranger. Again, “good parents” don’t teach their children in this either-or mentality. Teaching your kids to be wary of strangers doesn’t mean you can’t also teach them about the fact that danger can come from anywhere, even close to home. Better yet, teach your kids about how to determine dangerous and creepy behavior and how to avoid or report it, rather than focusing on a specific source of the danger which could miss the larger issue.

2.Heaping Praise On Them
should be
Praise Do-ings, not Be-ings

Positive reinforcement is vital to rearing well-rounded, compassionate, capable humans. However, it is worth paying attention as parents to what you choose to compliment in your kids. Common compliments such as “you’re so pretty” or “you’re so smart” reward genetic attributes or other factors not really under the child’s control. I could indeed see how this might lead to attitudes of entitlement as they grow older, as well as existential crises when they are no longer as beautiful or find something they aren’t clever in. However, there are plenty of opportunities on a daily basis to find legitimate and healthy positive things to say about and to your child; just have a care to your phrasing. Statements like “you did a great job on that project” or “I really appreciate your helping out with this chore” or even “my, you look especially nice today, great outfit choice!” all complement specific actions or choices the child made, thus rewarding them for taking more independent control of their lives (another goal of “good parents”).

1.Showing Them Educational Videos
should be
Quit With the Mono-focused Advice, Already

Argh. Again, educational videos for little ones, however vastly annoying they may be on the 30th repeat for the parents, are not in and of themselves evil or making your child stupid. It’s a tool just like any other, and can be used well or poorly. For example, a video a day is not likely to damage your child’s mind as long as they are also getting other forms of interaction and learning. A video to occupy the child with pretty flashing pictures for a couple of hours while you get some much needed work or cleaning or whatever done is also a smart use of the available tool.

What this point actually refers to, and unfortunately generalizes to meaninglessness, is the trend of some parents to behave as if by providing educational videos they somehow get a pass out of the more interactive parts of child rearing. Again, “good parents” don’t adhere to this sort of inflexible either-or thinking! If your toddler’s educational video diet is taking up the equivalent of a school’s 5-6 hour day, then yeah, I’d bet that your kid isn’t getting enough stimulation from actual people to grow their brain to its full potential. Educational videos do not excuse you from your parenting job, they supplement it at best.

In conclusion, I think that “good parents” would be able to pretty easily see the flaws and generalized thinking in this article and not get trapped into worrying that you’ve somehow damaged your child’s brain by letting them watch Baby Einstein. I’d love to hear what you think about the article. Please, feel free to elaborate on these points of mine or share your own thoughts in comments!

5 responses so far