Archive for the 'Writing' Category

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…

One response 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.

One response 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.

Comments Off

Sep 04 2011

Cleaning up around the bloghouse

While this blog does sometimes feel like all cancer, all the time, I do remind myself that one, I get a lot of good feedback on most of the cancer posts, and some of them seem to be actually touching people’s lives in positive ways (and even a couple of times in life-saving ways, a humbling thought indeed).  Two, everything is connected in our lives; you can’t dissect out one thing to talk about and not have it lead to something else similar or related, especially in the case of cancer, which affects everything else in your life and extends out into other lives that touch yours as well, whether you want it to or not.  And three, it’s obvious I’m making effort to not have this space be all about cancer, even though I plan to keep blogging regularly about it, and how it has and does affect me.  I think writing about it matters to me and to others and makes some kind of difference in the world, even if I won’t always see and know what that diffference might be.

Since I’m also a writer and it is a writer’s blog, I’ll be taking the kind suggestions of a few loved ones and cleaning up around the blog a bit, making some organizational changes for better ease of reading and following the various threads.  Those of you here for the Cancer Chronicles might want an easier way to skip the Weekend Links, for example (though most of those are pretty darn cool).  It’s obviously going to be a slow, convalescent work in progress, hampered by a particularly annoying cat, continued exhaustion to the point of sleeping on the computer, and other such things, up to and including attempts to post up some fiction left lying around collecting some dust.  I’ll be deciding what to keep sending out, what to give away for free here, and what to retire as early pre-cancer works made untouchable through time and trauma. Glad to see most of you plan to stick around, but for now I must change dressings and measure fluids and other such exciting post-surgical shenanigans.

Comments Off

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.

4 responses so far

Aug 19 2011

Thoughts on Doing Too Much

There’s several aspects to the phrase “doing too much”, not all of them bad. I’ll explore some of my thoughts on this here, but do feel free to add your own perspective in the comments.

Sometimes you gotta.

We’ve discussed that many a time here in the blog, so I won’t go into it again this soon, but when a thing must be done, and you’re the one around to do it, well…

And then there’s defining “too much”, which is a phrase whose definition really changes daily, when you think about it.  Stamina, willpower, energy, and more aren’t constants, they’re variables; and you’re unwise to treat them differently.

Sometimes I think a large part of life lessons revolve around learning our limits.  What do “limits” mean on that daily changing basis; when to push them and when to accept them; when to keep them and when to free yourself from them however you can.

There’s not much out there like facing terminal life conditions to make oneself face up to learning these lessons.  Too many of us get an easy pass to skirt around the issue.  I’m not saying life still isn’t hard, for most of us, much of the time.  But lessons like how to say “no this is too much for me right now” or “I need help with this, I can not do it on my own” are ones I’ve noticed many of us get to avoid facing head on.

When we finally must ask these things, reach out for this help, it often comes with a whole heap of guilt — and not always internal, either.  Asking for help is often scary, for those doing the asking and those receiving the request.  And if your requests for help have to change from “hey, I could use a little help on finishing this task,” to “help me clean up the bedsheets I just wet myself on”, your perspective becomes much harder to maintain.

But this is supposed to be about doing too much, isn’t it?

Anyone who knows me knows that I run at the equivalent of 110% nearly every moment.  Perhaps a slight exaggeration, but only a bit; I throw my full self into whatever I do, try to be as fully present in each moment as possible, whether it’s building and reorganizing a first aid kit (a long-overdue task that’s been on the to-do list for months that was completed today), feeding a 4-month-old a 6-month-old-sized helping of rice cereal and enjoying watching her race through it, or passing out over a keyboard as I atttempt to reorganize and make sense of a medication regimen that will keep me as pain-free and functional as possible while giving myself more space between constantly taking medications.  (All tasks done today, not counting the occupational therapist appointment, the physical therapist appointment, the open house meet-n-greet for The Teen’s school, or the several hours’ visit and chat about business and other sundry topics with a friend using our kitchen to make and share tasty banana bread.)

Now mind you, the only out-of-house activity of all of those was the school open house, but that’s still more than some people I know do in a week, much less a day, much less three weeks out from a two-month hospital stay.  And sure, I’m exhausted and I hurt (but I always hurt these days, and have been told to expect that I may always have some chronic pain issues from the damage I took to bones and nerves from this metastasis).  When one has experienced enough pain to completely incapacitate, it’s an effort to readjust one’s pain scale to know when to pay attention and slow down.  That’s a mental adjustment I do work on, daily.  Ha, but then again, that’s another task as well, isn’t it?

Tomorrow I’ll leave the house again; this time for an informal support group luncheon.  (And very much hopefully picking up the rest of my medications, or it will be a much more painful weekend than I’ve had for a while.)  I’ve never been to a support group, even an informal one, so it’s a new experience.  The rest of the day is scheduled around “resting”; visiting with my mother, discussing salary issues with the live-in help, hopefully a household board game in the evening for some fun.

And yet there are still items on the to-do list that have sat there, some for months (amazing how much cancer interrupts life flow).  This blog post has been written on all week, and isn’t the one most of you are waiting to read (the scans were overall good, and details will be forthcoming, I promise).  My physical therapist doesn’t understand why I can’t find time to do my PT exercises twice each day, and she’s unfortunately right in that if I did so, my endurance would increase accordingly and I could get more done of what I want or need to get done.

I think that you’ve done “too much” when your body shuts you down against your will.  If I want to finish this post, but I wake up 5 hours from now with dffffffffffffffffffffffffffffffffffffffffffffffffffff across a paragraph’s worth of screen, it’s quite likely I did more than I “should have”.  But that’s an “after the fact” tell, not a signal to stop before I get to that point.  And I do agree that sleep should get its own fair 110% along with the rest of daily activities, though that’s a lesson it’s taken a stubborn while to accept and learn.

It’s made harder by the fact that other people can’t tell you what your “too much” is.  When I say I need to write more, and someone responds that I really need to focus on visualizing a healthy self and resting and taking care of me before “worrying” about more writing, on one level they’re right (especially their own level, of what they can imagine they’d need to do under similar circumstances — may none of you ever have those).  But when a blog post or fiction snippet I finish at four in the morning rejuvenates my soul, gives peace to my mind, allows me to actually, deeply, rest for three solid hours, it becomes harder to believe that taking the time to write was “too much”.  And you can’t always know ahead of time that I “should have” made that choice instead of taking my ambien and trying for just the resting part.

So, conclusion:  No easy answers on what “too much” is, when to know when you’ve found it, or how to avoid it.  But I’d adore for this to become a discussion in its own right and hear about your own experiences or attempts to control this urge.  If you have any, share your thoughts here.

3 responses so far

Aug 09 2011

Writing contemplations

There are too many things on my mind lately.  (Not that this is unusual.)

Prioritizing where energy is spent is of course at the top, as has been evident from several recent posts here on the blog.

I need to spend more time each day meditating and otherwise focusing on a healthy me, a healthy body, in order for any of the other things to get done.  This has been so much harder to do this time around than last year’s cancer experience, for several reasons.  Some of the reasons I’ve discussed; some would cause more emotional drama to discuss publicly than I’m sure I’m willing to take on, which becomes its own writer dilemma of sorts — which shades of truth to tell?  I admire writers like Jay Lake, who is raw and honest and high-disclosure about all aspects of his travels through being a writer with cancer, and to some extent I try to emulate that attitude in my own style here.

Part of why to share these experiences is important is because so many people don’t talk about it. “The Big C”; isn’t that a TV show or something?  Not one I watch, obviously.  I think Hollywood could do some justice to the topic…but I think they’d get some important things wrong, or left off entirely.  And yet the same combination of disclosure and obfuscation happens here, and I suspect in Jay’s blog, and any others brave or brash enough to throw their trials out there for the world to read.  Instead you get these prose snapshots, written moments in time subject to interpretation of what lies underneath the surface of the textual picture, never the whole story.

So my top goal at the moment is to reflect each day, for some period of time, on healing, on what a healthy body and mind and self feels like: to remember.  Because the illness becomes the reality so very quickly.  It’s like the PT exercises (physical therapy); reteaching the muscles how to properly align and carry the body because after long enough, they literally don’t remember.  ”Proper alignment” doesn’t feel “proper”, it feels strange, off, even unnatural.  Remembering that I can heal, am healing, WILL heal that along with the rest of me (or now have a darn good chance of doing so) has a similar mix of dream-like truth and un-reality.

Family is the next level of returning to self and life motivation.  There’s so much to blog about on this topic that it’ll have to wait for its own several posts, since I can only put so many written pieces on the screen at one time.  It’s definitely a teamwork effort, and there are several team combinations within any family.  One of the first promises made to the team of me and my new baby was “You keep me alive, and I’ll keep you alive.”  Regardless of your religious or metaphysical beliefs, this bargain feels real and genuinely made on both sides.  So many of the circumstances surrounding Wednesday’s existence can be said to reflect back on that bargain as I held her newly-arrived self.  I know that I pay back pieces of that deal daily in caring for her basic needs, but I hope when the time comes to pay back the larger portion of that deal that I give as good as I’ve received so far.

And then, the writing.  A career I’ve dedicated myself to building for the past five years and more, and one which feels like it “should be” so much further along than it is.  This won’t end up one of those writer angst posts, since that hasn’t really been an issue for me for several of those years.  I’m confident that the combination of my business knowledge, training, and attitude along with with my dedication to master the skills and art of the writing craft will result in some measure of what I can designate “success” in this field.  The roadblocks along the way, however: ongoing and large, and so discouraging, and so tiring to keep hurdling, keep believing.

Yet here, too, even in the midst of the hardest battle for my life to date, there is visible progress.  I keep coming back to blogging, and at least a semi-regular webpresence is wise for any writer these days.  And I certainly have no end of material to blog about, across multiple categories.  There is so much emotional distance between the stories I already have written and who I am after this latest round of struggle to stay alive that it’s hard to send out those stories again, to get back into the routine of submission, rejection, re-submission.  I think it’s a necessary step, however, even if just to get that habit back; the stories do no more good sitting quiescent in a file than as a guilty albatross.  I skeptically contemplate taking one of the workshop classes.  I bemoan the lack of energy to attend the conventions where I enjoy so much and derive so many good writerly things from attending panels and meeting other people with similar passions for the written word to my own.

So I have to believe that these, too, will repair, resurge, resurrect, as I continue to return to that basic step of envisioning a remission-filled and healthy me.  I suspect some of my former projects will be long-term trunked — perhaps not taken out again.  I hope not, as the thought fills me with sadness; but it is also true that the person who began those projects is not the person who is typing these words anymore.  My goodness would I like to attend a writer panel about THAT topic at a con, to hear what other writers who have experienced similar life changes have to say along those lines.  I suspect some stories will survive in much-changed form, or be finished through sheer stubbornness even if not honed and finely-tuned to publishable state.

And I suspect Callie will return, for those of you worried about that one and following the Chrysalis story thread, hehe. And there will be new stories, some fragile and delicate and beautiful, some fierce and raw and gripping, some quietly moving or laughingly skittery-shallow or filled with shades of gray and rainbows all at once — just like this life I fight to keep living.  I hope to keep having you — and an ever-increasing more of you — there to share it with me.

3 responses so far

Jul 31 2011

held-over weekend links

had a back-log built up, didn’t want to spend the links all at once, ya know.

From the always-intriguing BLDGBLOG, you’ll never fail to get my attention with a mention of secret rooms

When I’m a more “established writer” by their qualifications, I totally want to attend this

I might have linked to this before, but tattoos that track glucose are worth linking to again due to both coolness factor and health usefulness…

Long and involved but still worth reading about why the right to privacy is more than having nothing to hide…

It may not be the “god particle” but CERN might be getting closer to the Higgs boson particle

Comments Off

« Prev - Next »