Archive for the 'best family/friends ever' Category

Nov 11 2011

Battling the “D” word

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

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

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

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

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

Comments Off

Oct 22 2011

Battling Despair

I have wonderful people at every turn telling me good things, sending me unsolicited but supportive emails, leaving awesome comments on my blog, helping me out in every way, and still I feel poised on the brink of collapse into a deep dark place.  I think part of it was getting sick; it is no exaggeration to say that along this path every time I start to feel like I’m getting a handle on the road to healthiness, something happens to set it back.  This time it was my stamina that was drained by the flu or whatever illness it was.  In fact, I’m still running a mild fever (though now within the “safe zone”) off and on and still resting or sleeping large parts of the days, so it makes sense that I feel weak as a premature kitten.

This hole that appeared under my left arm (instead of the one mostly healed on my right) doesn’t help either, opening up one or more times a day to drip fluid down my side.  Of course everyone assures me that it shows no signs of infection, the fluid is the “right” color to be draining, but that side is so sore and weak, and that was my stronger side, so now each side is weak.  My walking  PT shows how much stamina I’ve lost, hyperventilating and in tears walking the length of two houses trying to maintain proper core muscle engagement and walking form. I had been up to three, maybe even four house lengths before getting sick.

The helper looks for ways to cheer me up, though that wasn’t part of her job description.  She also looks for ways I can interact with Wednesday without having the baby cause too much pain (kicking and squirming and such), and all of that helps, just like the kind words and emails and comments mentioned above.  I don’t let myself think about how much lower I’d be if  I didn’t have those things to keep me going.  But I’m riding the ragged edge, and wondering how much longer, how much more I can take.  I’ve been making myself keep writing bits and pieces, making myself send out stories.  I never used to care about rejections before, they’re part of the process; but the latest (at least it was personalized) rejection on a piece of flash fiction saying they were too obtuse and didn’t get what was happening, when I thought it was a finely-tuned piece where what’s happening is obvious and it all fits together, even the title…well I was warned that there would be a percentage of readers that just don’t get it.  You can’t dismantle your work for those sorts of folk.  I know all of this, have learned it over and over.

And still, I feel weak.  If I could sell just one story, I know that would rejuvenate me, give new life into my work on that front, but personalized or not it’s rejections that keep coming back.  And I know all the pep talks about the right story finding the right market and gotta keep sending them out to have a chance of selling them and so far…I am doing those things.  But I am tired, and weak, and the work never ends, and there’s not even a break in sight much less a step forward.  I’m running on a treadmill that’s being dragged backwards.  And these are NOT the sort of thoughts to have if one wants to stay cancer-free.   The mind-body connection does matter, just like the modern drugs and radiation that killed it matter.

So far, the light is still winning; so far, I can still remember why it’s worth it to keep living (love, always love, among other baser things); so far, I still believe in the power of modern medicine and the awesomeness of my doctor and the love for myself and the love those around me give me.  But please, universe, if anyone is listening, send some big positive tangible lasting step forward soon.  I’m floundering here.

One response so far

Oct 18 2011

Mostly baby, little bit me

Wednesday has continued to be mostly the perfect baby.  She loves everyone and has a smile that even baby-haters seems to want to return, and fits into the world like she already knows how loved she is and how strong a place she has in it.  I wonder if that’s what my parents felt like when they had me, not to be egotistical-sounding.  But my name means beloved, and I have always strongly known myself and who I was and how much I was loved, and if the indications are right, my bright and shining Wednesday will grow up with a similar knowledge.  I hope it leads her to even greater things, places, and people than it has me.

I dream of her at different ages, and my superstitious self hopes desperately that means I’m alive to see her at those ages.  I do my PT even when I don’t want to, when everything screams that it hurts too much and no one cares anyway or will notice if I do, because I want to be there for those ages.  I save my tears for late at night when everyone is in bed that I can’t right here, right now, carry my baby around to rock her to sleep when nothing else will soothe her, for one of many frustrating examples of limitations.  I have to be happy and thankful that others are there for those duties, and I am.  But there is so much I am missing and some of it I don’t get do-overs or make-up work later on.  Some of it I just have to be happy she is getting from others, so that she can be that all-loving open and friendly baby I wanted her to be, so that she can grow into the person who knows so solidly, without question, how loved she is in the world.

And yet still, she and I have a special bond.  I knew her in the womb and here she is:  how I knew her, yet ever-changing, just as she should be.  So much of how she was born is tied up in why and how I am still here to write these words.  She knew when to come out, and how, and did, and because of that, I’m currently cancer-free and without broken hips.  Timing matters.

Even if I have months’ worth of PT to continue, to get to where I have a chance to keep up with this bright and beautiful being, every tear is worth it.  The set-backs are harder to deal with — more fear-inducing — because superstitious brain gets that edgewise word in every so often no matter how strong logical brain gets trained.  So a week of the flu takes away three weeks of back-bruising PT progress, and there is fear; a scab comes off the left-side scar to reveal a two inch deep suppurating hole, when it was the right side that had the original hole and the greater damage and more swelling, and there is fear; to talk about these things feels like it gives them more power to damage, and there is fear.

I still do all the “right” things.  If my PT is back down to 10 walks from here in bed to the bathroom and back, then that’s what I do.  I keep helping The Teen with his homework, guide the helper to helping me and the baby and the house, keep an eye on the managing of the house to help my husband, and all the other jobs that I can do, and am good at even in sickness.  I get my friends to remind me they believe in me, though probably less frequently than could be helpful, heh.  I’m back up to doing something about writing every day, even if it’s just energy enough to process a rejection (hey, first rejection of this back-on-my-feet slog today, yay!), so that’s something too.  I keep reporting in to the doctors everything I’m supposed to, which means I’ll be up groggy and early and painfully (for me) tomorrow to get this leaking hole seen to.  Gross, still, but cancer is never pretty, easy, or tidy.  Fuck Hollywood for THAT lie.

People ask me how I feel, and I honestly can’t say.  It’s all just too much.  Sometimes you’re just neutral, not feeling much of anything.  Sometimes you’re rapid-cycling through so many emotions so quickly it might as well be idling in neutral.  Sometimes you feel something super-strong at exactly the wrong time — say while talking to a boss, or while trying for once to “take a break”.  All these drain you when you need filling, so when someone asks “what’s wrong?” where do you even begin?  It becomes less about taking a break and more about trying not TO break, because (for example) there’s this perfect, beautiful, bright and shining little girl smiling at you like you’re the best thing in her entire world– and you know that for her, that’s HER truth, and that matters.

For now I’m going to wrap this up and either find a new destination for my bounced story or watch an episode of something in hopes of getting a little sleep before my exhausting and scary doctor day tomorrow.  Possibly both.  Perhaps neither.  Either way, I know tomorrow I get another one (probably more ) of those smiles, maybe even a laugh, and that means it’s a day worth living for.  I hope all of you can find something even half as good to get you through your own days of fear and happiness.

2 responses so far

Oct 14 2011

clean, but sick

I came home from the doctor appointment today(written Tuesday), and by 9pm had a fever of 103.  Since I was told to call in about anything above 100.4, I called the after hours doc.  Apparently that concern was more while I was in active chemotherapy, so he told me to take acetaminophen and watch it. If it got worse to go to the ER, but otherwise just call the doctor in the morning.  It’s been so long since I was actually sick like normal people get that it was a set of novel sensations; rjwpppppppppppppppppppppppppppppppppppppppp/////////////////////////////////////////////////

Tried starting this entry a couple of nights ago.  The above is a genuine (though edited–and trust me, you wanted it edited, the slashes went on for four more horizontal screens’ worth) example of me falling asleep at the keyboard, and the hijinks that can ensue.  I had a much more damaging and embarrassing example happen a few days ago when I apparently cc’ed someone else on a private email that shouldn’t have been copied, so I’m trying to put measures in place to minimize the potential for that kind of future damage since I’d like to keep the friends I have, thanks.  So a more public apology to the both of you C & J for that, since I’ve already extended personal apologies to each, and a promise to change my email habits until I know I’m past this stage in the healing process (the falling asleep and hitting random keys stage).

Anyway, back to the better and worse news that was the original point of the post.  I’m finally better enough to get back online, I’ve been off for a couple of days doing not much else except roasting in my own juices and existing.  Even breathing was/is a struggle, since I slept through so many pain med cycles that everything hurt.  It was impossible to keep an eye out for new pains like the doctors asked me to because everything hurt so bad I couldn’t determine what was new and what had just been managed by the pain meds.  They put me on antibiotics and told me to keep as much fluids down as I could.  I only threw up once, otherwise I took the anti-nausea pill I have on hand for “as needed” and managed to keep the crackers and juice down.

I noticed my right side hurt more which made me paranoid about appendicitis so the main thing on my mind was please, if anyone out there is listening, no more surgeries for a while, I can’t take any more surgeries right now.  And of course it makes more sense for my right side to hurt more because more has happened to it; it had the bigger hip tumor, the bigger breast tumor, more to heal all around, so when I started missing my pain med cycles it would make sense for the right side to hurt more all around.

At the worst of being sick it almost made me miss the hospital, where I wouldn’t be missing my meds so frequently.  On the other hand, I wouldn’t have gotten the sleep that probably helped me get this far into healing in only a few days.  I’m still totally shaky on my feet and weaker than I was before getting sick, but I can at least stay awake for an hour or two at a time and talk to people, which wasn’t happening for a couple of days there (sleeping or dozing or totally zoned out and only half-aware of what was happening in my environment).

I got our helper to try to wake me up if she heard my med alarm on my phone go off, so for the past day and a half I’ve been slowly catching up, and now I’m pain-wise almost back where I was, though not quite, and still hurting enough that it’s hard to breathe (and therefore hard to talk).  I had been doing my PT for a week straight, so I’m upset about having yet another break in that routine, but will start again as soon as my pain will allow it, probably in the next day or two.  The lymphedema specialist called during one of my zone-out days, so I had to ask if I could call back because there was no way I was going to be able to coordinate all of getting that set up.  This morning I found the paper with the number and it took me a good two minutes to figure out what number that was and why I needed it, which should show you how out of it I was.  I checked in with my nurse every day, including today, and she said she honestly thinks I might have caught the flu, since she had another patient with the same symptoms who ended up going to the ER and that’s what he had, type A flu.  I could have gotten it from my husband, who was sick last week, or even from the baby’s flu shot.  They were supposed to have given me the flu shot during my Aridia treatment but didn’t, but I suspect I might have gotten sick even if they had given me the shot, since I got sick the same day which means I’d already been exposed (which I’m thinking I no longer need the shot, now that I’ve gotten the flu itself).  So I keep drinking buttloads of fluids, finish my antibiotics, get back on my med cycle fer realz, and go to the ER if there’s a sudden reversal in the healing.

The good news, that everyone SHOULD be excited about, and most are: The latest set of scans are clean.  The oncologist and radiologist looked back through the last four sets of scans and compared them all to make sure, and they said maybe if you squint really hard and imagine really creatively you might pretend to see something in one of the old places, but that realistically the newest set of scans look clean, not even really a ghost of a tumor left.  Now this doesn’t exactly count as remission, since there isn’t a trend or history of clean scans, this is just the baseline to start from, but it’s a pretty darn good one, and I’ll take it.  I’ll keep taking the tamoxifen, keep taking the scans every two months, keep taking care of myself through PT and diet, hopefully avoid getting sick like I just did too much, and with all that work and a little luck and all your good thoughts sent my way we’ll hit remission yet.  Thanks to everyone for all the good love and support sent my way, keep a healthy image of me in your head whenever you think of me, and I’ll keep breathing, and healing, and living, and loving, and writing.

One response so far

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 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 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 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…

One response so far

Sep 01 2011

Actual nearly-on-time upate

Worst experience yet here at St. David’s.  Just goes to show once again that even good hospitals can have bureaucratic screw-ups and you can’t ever relax your vigilance, and even then sometimes things will come up.  I called the surgical oncologist’s office (Dr. Cherico) last week, worried about the whole pain management issue while in the hospital, and they assured me that they had discussed it with Dr. de Celis’s office (medical oncologist, currently de facto primary care physician though I’ll have to pick one of those eventually, definitely on his recommendation) was going to be taking care of all of that.  OK, good.

The hospital called me for the standard slew of pre-operative questions later last week, and I told them about the pain management issue and they took down a list of all the drugs and dosages I was currently on. They knew Dr. de Celis was going to be taking care of it, and that I was going to be at least an overnight stay if not a few days stay according to Dr. Cherico (the surgical oncologist) due to the circumtances (only a month out from chemo, being on steorid drugs, lack of stable mobility, etc.) Good.  Ok.

Then I got paranoid on Monday, so I called Dr. de Celis’s office, got his assistant, and explained my concerns to her.  She assured me that they knew about it, and were going to write the orders, and it would be taken care of.  Ok, yay!  I couldn’t think of anyone else I could call that would have anything to do with this, so I was as calm as I could be on that front even though I really wasn’t looking forward at all to more pain just when I was starting to get a lessening of all that from the steadiness of the pain regimen and the OT and PT exercises I was doing and just the general up and moving around and healing that was taking place.  It seems like the past two years have been Sisyphean in everything that has happened to me and I’m so very very tired of rolling that rock.

So we get to the hospital a bit late but that’s not a problem, we go through admissions quickly since we’d done the pre-op over the phone and they put me in a room.  Dr. Cherico comes in, asks if I have questions, we talk again about Dr. de Celis writing the orders for the pain stuff and Cherico knew about that concern already and would give de Celis a call on that as soon as he left the room to make sure, and to reminded me expect to stay at least overnight.  Right. Ok.  I ask a couple more questions assuring they would remove allllll the breast tissue from both sides because I really didn’t want to have to do this anymore, and he agreed that was a top priorty and that he was also going to be removing the group of lymph nodes on the right side (the same that were removed last time on the left), and wasn’t planning to remove any more from the left side, just the remaining tissue.  (I was also told by one of the nurses that Dr. Cherico was the one who had removed her gall bladder and was considered by those who worked there to be the top surgeon in the place, so that was another reassuring bit.)

Then, the Recovery Room.  Ahh yes, you may remember from the first surgery back last year that that part was the worst part of the whole process, and here it was again.  The doctor in charge there apparently hadn’t gotten the many messages about getting me to my room and onto my standard pain regimen as quickly as possible, and therefore wouldn’t let me leave until my pain was “under control”.  As clearly as I could through the agony and blurrines of post-op awakening I begged and pleaded with them to let me go to my room and to please give me my normal doses because this wasn’t going to get any better as it was, but who in those areas listens to a patient coing out of an anesthetic fog? No one, that’s who.  After keeping me in agony for THREE HOURS LONGER than they should have, they finally gave up and decided to put me in a room since they couldn’t think of anything else to do where they were and the doctor down there wasn’t going to give me more than the 250 mcgs of fentanyl she had already given (I’m currently on 900 mcgs and yes I know that would normallly knock out a horse (but remember, Special Medical Snowflake).

On the other end of the fuck-up, fron the time of the consult with Dr. Cherico a week and a half before the surgery, we knew it was going to be an overnight stay and as you can see above that was repeated with each phone call.  I’m not sure who screwed up that part, but the fifth floor nurses didn’t even get told I was needing a room much less the overnight part until ONE HOUR before I was sent to the room.  They were literally running up and down the halls even after I got there, trying to get everything together that I needed as I was moaning with pain (the transfer between beds was particularly hideously painful).

My poor folks (Dad, step-mom, step-dad, and Nathan) Basically had to spend an entire afternoon and evening not being told much of anything, so I’m sure it was anxious-making for them as well, especially after it started to become apparent that someone had messed up somewhere.  Today (now yesterday) once they found out they started calling and lodging complaints, so I’ve been visited severaltimes by people including the manager of the post-op recovery room area with apologies and we were just following policy and whatevers.  My response has consistently been I called and told people ahead of time what needed to be done, and that should have been communicated, and when they called Cherico and heard that de Celis was in charge of pain management they should have called him and gotten the story correctly.

On the other side of the equation, the surgeon did tell them that the surgery went very well.  They got the mass, and 2800 mg of tissue from the right (which he said “that means a large breast”) and the 1000 mg that had remained on the left side from the last surgery.  Apparently I made him work a bit to get it all out, but it was a success and the mass was hard, which when I asked what that meant he said it could just be dead cells but he wouldn’t get the pathology report back ntil tomorrow (which is now today) and also wouldn’t know if the lymph nodes tested positive until then.  He also said they didn’t have to take muscle.  If the lymph nodes tested positive that would mean we’ll have to be more vigilant, since it highly increases the chances of more metastases.  Since we were planning on scanning every two months and continuing the anti-estrogen therapy and bone treatments anyway, we’ll be doing the first steps of what we can on the prevention side even if that is the case, so you, dear readers, will know more about that when I will.  If they test negative, of course that’s much better news, but since my cancer is genetically based that doesn’t really lessen the vigilant side of things.

Everything is draining as it should, I’ve already sat up for 45 minutes or so and stood up to go to the bedside commode, and am moving both arms (painfully), and my chest feels like it’s been peeled open, hacked on, had (non-essential) organs removed, and put back together.  So how was your day?

2 responses so far

Next »