Archive for September, 2011

Sep 27 2011

more writing than cancer topics, I hope

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

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

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

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

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

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

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Sep 24 2011

weekend links smorgasboard

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

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

Pronouns galore! How do you use them?

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

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

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

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

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

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

One response so far

Sep 22 2011

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

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

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

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

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

Eric’s needs:

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

.

2 responses so far

Sep 20 2011

wound tracking (TMI warning)

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

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

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

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

2 responses so far

Sep 19 2011

Complications and trusting the body

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

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

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

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

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

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

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

O, I am so tired of hurting.

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

One response so far

Sep 17 2011

tracking weekend links

Published by Reesa under Writing, follow the link chain, health

pigeons, pellets, and writers — I like what he has to say about controlling what you can and de-emphasizing the rest in motivational goads

On the local front, an informal support group that I enjoyed meeting recently:  Pink Ribbon Cowgirls

Not sure when the last time I linked to Jay Lake’s journal was, but it’s been very helpful to follow his during my own battles with cancer, even though his sounds like a drastically different experience than mine has been. That’s probably worth its own post, now that I think about it — how unique to each patient the cancer experience is.  What he has to say on this one is pretty rough…but not untrue.  And quite similar to another thriver of the disease

And this is why I’m only taking a short break from my PT

We might actually be able to start vaccinating for viruses one of these days…

Hover cars or planes? A little late for the Amazing Future once promised…

and one for my law school friend in Georgetown…

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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

Sep 15 2011

Reader question: business card design(er)

I’d like business cards, that can be handed out at cons and such (since of course I’ll get healthy enough to travel and go to cons and such).  I know I want to incorporate the themes/aspects of writing and phoenix in the design, while keeping it simple enough to not overwhelm (keeping to good business sense/practice in the designing).  Since they’re writer business cards, while I can have stuff printed on both sides, there does need to be a little blank room kept (perhaps on the back) to jot a quick line or two of note down if needed during card trade-off.  Color is fine; bold and eye-catching while not too cluttered would be fantastic.  I have enough artistic readers out there, can anyone point me in the direction of someone who would be willing to work with me on such a thing?  Payment can be in money, trade, certain favors, or whatever other fair exchange we can devise.  Message me here or in the many other places you can reach me, if this is you or someone you know, and let’s talk!

2 responses so far

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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Sep 12 2011

Polling readers: creative fun

I have my own ideas I’m pondering, but I’d like to hear your thoughts as well.  What more would you like to see on this blog and website?  I’m loving the things I’m finding like the 5 Minute Flash Fiction contest by Leah Petersen, or when writers give away advance copies of their new releases in mini-contests, or blogathons, or all sorts of creative and/or collaborative projects or one-offs that you can trip over all across the ‘net.

So here we already have my talks in random order about my cancer journey, perhaps (likely) to be more organized later, and weekend links from the interesting things I find during my own internet journeys, but tell me, oh Fearless Readers, what else would you like to see here, semi-regularly or randomly?  Or on my Twitter account, for example?  I keep thinking there’s something on the tip of my brain I could do with that but so far it still hasn’t gelled into useful creative output.  More free fiction, assuming my creative well keeps filling?   I’m not reading much in the way of books lately, but discussions on various shows I’m watching from a writer perspective?  What appeals to you from other writer blogs that you think would represent well here?

Since I’m doing my own ponderings along these lines I can’t promise delivery upon request, but on the other side, you can’t get what you don’t ask for, either.  Anyone?  Bueller?  I’m definitely interested in collaborative and cross-genre, or even cross-art projects, and still have a good one in the working stages coming to you soon from the first round of the cancer experience, once we work out some final visual details and I can move forward onto other ambitious and provocative projects.  After all, though none of us know how long we have here to get done our most ambitious and beautiful dreams, I’ve just received some more pointed reminders than most.  And I have some great friends, loved ones, and children to leave legacy for…

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