Archive for the 'falling down' 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.

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Nov 09 2011

rough day…

Revised release day for me is tomorrow(Wednesday), I still feel mostly like I’ve been dragged over a gravel road for a few miles, but it’s an improvement on when I came in, so there’s something, anyway.  I rant here a lot about my loss of energy and stamina, but you’ll have to put up with a little more for a little while. At least it’s not all that.

Sat in a chair too long and needed IV morphine to stop the back spasm after getting back into bed, it’s made the rest of the day extra painful. I still did a walk for PT, and ended up needing IV again later on when the back wouldn’t shut up again.

Thought I’d lost this post when I passed out over the keyboard, but thankfully autodraft save saved the draft-day.  Definitely a crankypants day and seems like I have too many of those on this blog lately, but that is the reality of my life: It’s hard, and a lot of it sucks right now, and I’m superlow on the internal cheerleading needed to have it otherwise.   Ra ra, infection and bloodclots took all my physical stamina away.  So now I’m a horse with a handicap weight, starting behind the start line instead of at it like the other little ponies.  Not fun, not fair, not much to do about it other than the same old soldier through and believe that surely, this time, someone else out there is a target for the universe and not me, and it’s my turn finally for some kind of damn break just for a while, to heal up and get a chance to enjoy my daughter before she’s grown (at the rate shes going who knows? already crawling).  I just need the rest, the break, the recharge, the change from having  badness of such large magnitude be what I get.  Quiet time.  Nap time.  Rejuvenation.  Rebirth phase of the Phoenix.  These are what I”m ready for, what I NEED, far past wanting.  So that’s what I want for Christmas. Preferably an early Xmas present. That and probably some lymphedema sleeves, I’ll know more once I get that appointment to get measured. But really, Santa, a break is all I NEED.

Arrrrrgh, just had another horrible back spasm getting back into bed.  And that’s being careful and everything.  Please, please no more, we don’t have the good quick-acting IV stuff at the house.  Let this just be a sign I need to be home and finishing recuperating there.

On the good side of things, I’ve got 8 stories floating out and about, and only 4 more that I can even try to clean up and circulate (one of which will likely never, ever get published even though all my friends like it because it involves violating two sacred taboos, Santa Claus and children), so It’s about time to start trying to turn the creative juices to some actual new work.  I do have one new project that I’ll be setting up on another blog, so for those of you in the know (or those of you who just want to render an opinion), which of these themes do you like better? Dusk to Dawn or Chateau And hopefully I’ll hear from my visual artist soon on last year’s project so we can get that finished and out into the world where it belongs.  Love to you all!

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Nov 03 2011

Still here…

This is the first day I’ve felt not like complete worn-out mud since getting here, strange since I had a CT scan this morning and an ultrasound yesterday morning.  My left arm continues to be swollen to horrible proportions and has very little mobility.  This is reversed from right after surgery, where my left side (which had less work done on it overall) was much more functional.  My right side is now the more functional side but that’s for very loose definitions of the word functional.  They’ll be keeping me here until my 10 day IV antibiotic treatment is done for whatever infection is somewhere in my body.  They still suspect the left side, either around the port, where the hole and drainage is, or where the blood clots are.  No really straight answer why I’m suddenly having multiple blood clots; it could be from the surgery, the tamoxifen, or some other source.  I still have the blood clot (pulmonary embolism) in my right lung.  I’ve been on oxygen since I’ve been here.  I’ve put in a couple of calls to talk to my medical oncologist, the one I’m always singing the praises of.  I feel like I need to hear the answers to some of my questions from him, as I trust him to play straight with me and let me know if these are just long-healing complications of a ridiculous medical situation all around or signs of something more concerning.   The infectious disease specialist seems to know his stuff and I believe him when he says he’s been in contact with my MedOnc and my surgeon. I still feel like I need the emotional reassurance of answers from a doctor I’ve spent time establishing a trust relationship with.

This in some ways has been worse than the cancer stay earlier this summer.  I’ve had far less visitors, so felt much more alone at times (my mom — good for her — did her own prophylactic mastectomies so she’s been unable to do the regular visits that I was enjoying from her).  Our live-in helper doesn’t have too many errands that bring her this way so I haven’t gotten to see my baby as much.  The Teen is upset at me being back in here and understandably is conflicted about visits.  Having infection (possibly on top of the flu a couple of weeks previously) and difficulty breathing has completely wiped out my stamina that I had built up through my daily PT.  I’ve mentioned it before, but despair is desperately hard to fight off when it’s one step forward three steps back.  Questions about why to keep fighting, to keep going, to keep writing, to keep anything start creeping in even when I know better, even when I have family and writing and all the same reasons to keep fighting, it’s gets harder and harder and more and more draining.  I need something to start picking up; going right; a sign that it’s not all just going to keep staying low.

I can take some secondary pleasure in others’ successes; I’m proud of my husband for finding one of his dream jobs, doing well at it, already getting a raise not too many months into it, and proving himself capable of the job.  But those are his successes, that he’s been waiting ages for and are his to fully enjoy now that he’s finally getting them.  It doesn’t lessen them at all for me to be able to applaud his success and still feel down about my own downward trend or holding pattern at best.  I’m super-pleased that he’s finally getting the kudos and rewards he deserves for the years and years of hard work he’s put in.  My mom had some early complications with her surgery but it’s fixed now, and she’s on the mend, and now out of the massive danger zone for getting the kind of cancer I had.  I’m in the hospital again, but it’s not for cancer, I’m still scanning clean for that with all these extra scans they’ve had to run.  So there’s a lot of things that objectively aren’t as bad as they were last time I was here.  I’ve had MUCH less problems with the pain management regimen and that’s been a huge blessing since if I’d had to deal with that on top of everything else I don’t know how I would manage.

But (TMI alert) my functionality has been almost completely wiped out.  I can’t shower on my own (I could before I got the infection, even though it was hard and hurt and took a long time).  I need assistance to clean myself if I have a bowel movement; my arms are limited in function enough that I can not even do that properly, and I’m sure readers can understand how embarrassing that is.  The fold of hip and stomach is having some skin breakdown issues (possibly relating as far back as radiation therapy).  Those of you with large breasts can understand my disappointment there, as I was looking forward to not having to worry about skin fungal issues after the large breasts were removed and no longer held moisture underneath the fold.

I don’t talk about all this to gross people out, though it does feel yucky and embarrassing; I talk about it because people don’t.  Talk about this kind of stuff.  and I suspect at least one or two of you are interested to know the less pleasant side, why the feelings of downness and despair come so easily when I jut beat cancer for the second time.

For those wondering about the results of the scans: the ultrasound and the CT both show blood clots in the left arm as well as the right lung.  I’ve been told that there aren’t good ways to treat this other than putting me on blood-thinning drugs and letting the blood clots slowly dissolve away by the body’s natural response.  Apparently a large pocket of fluid on the left side is gone, even though we haven’t been purging or massaging that area, so the infectious disease specialist seemed to feel this as a good sign of the body taking care of the fluid on its own and able to take care of the rest of the problems.  I’ll report more if I get a chance to talk to my MedOnc doctor, as again I trust him to give me non-sugarcoated answers.

I’ve gotten more rejections from the stories I sent out that  I wrote before the second cancer round.  Normally rejections are just part of the deal, but I’m more upset about those than usual as well.  Even making it to the personalized rejection part of the process isn’t a consolation.  At this point I’d sign up for a writer’s workshop like Viable Paradise, but of course won’t have the stamina and energy to do that for a quite a while, so will have to keep attempting to improve my work on my own/with the help of my editor and writer’s group.  I still feel like I have a handful of stories that I just haven’t matched to the right market yet.  I know that a story sale would energize me quite a bit on that front, so just have to keep trying.

I hope most of my Faithful Readers are having a better time out there than I am.  I do have one project that I’m continuing to enjoy and not lose steam on, so be looking for something new from me in the near future.  A Halloween launch would have been perfect but once again, lack of energy gets in the way of best intentions so you’ll have to be content with a less auspicious release date.  Feel free to comment on the content in this post, but I’d particfularly like to hear about good things happening your way lately.

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Oct 27 2011

still here…

fever spiking and going down for past few days, nurses are great about changing sheets and helping out whereever possible.  Ufortunately, all I can do is lay around and make work for them by soaking sheets with sweat and eating ice and such. They’re taking lots of blood for cultures, got an ECG for the first time as well as an EKG when first coming into hospital and an xray.  On two different types of blood thinners to prevent further clots, but they can’t do anything about the one that’s already there except wait for the body to deal with it.

I’m frustrated because I was keeping up all the recommendations, legs elevated in bed at or above the heart; doing my in-bed PT exercises nearly every day; walking more than to and from the bathroom several times a  day plus walking a little extra, especially on appointment days;  had even gotten up to walking down several houses and back (Round Rock has TERRIBLE sidewalks).  Now I can barely stumble the step it takes to get the bedside commode, can’t move or anything without help, and spiking 103 fevers every night isn’t helping.

At least this part isn’t cancer, even though they aren’t quite sure about why the fevers keep coming around. I miss home,  but the upside is that the helper is hopefully getting a little bit of rest having only one person to take care of so constantly so she’ll be able to catch up on rest.  Nathan has stopped by the last couple of nights which has been nice.  I miss my kids bunches, will probably miss Wednesday’s first real crawl being stuck in herel instead of her cute 5 point crawl-scoot she’s been managing.

This has been a bad time all around.  But a perfect example of the one step forward, three steps back concept in healing.   At least it isn’t cancer bears repeating.

One good note: Whether or not it gets finished, I wrote the first third (possibly fourth, depending on how the sections break down) of something brand-new that I had no idea of before all this latest cancer round started. So that seems like progress to me.

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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.

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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.

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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.

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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?

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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.

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