Archive for the 'bravery doesn't always look it' Category

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 19 2011

Prophylactic Breast Action

I bet I get at least one spam comment thanks to the title of this post, but wanted to talk about yet another something most of you ladies may not know about, and since my cancer chattering on this blog has already potentially saved one life, I look for opportunities to do similar things when I can.

For those of you with hereditary breast cancer in your family, we’ve already talked in the past about getting tested for any of the genetic mutations that are likely to cause you to develop breast cancer, often far earlier in life than most people who get cancer do.  BRCA1 (the one I have) and BRCA2 account for only about 5% of all breast cancers, and are easily testable.  If you have a family member who contracted breast or ovarian or uterine cancer before age 40 you might easily be able to convince your insurance to pay for the test; even more likely if a relative has the actual gene.  For those many uninsured, I’ve been told it’s only a few hundred dollars for the test, which is definitely worth it compared to the hundreds of thousands of dollars cancer costs.  They’re also finding more genetic factors besides just these two that contribute to a higher tendency to develop breast cancer at any point along the living way.

I just got correspondence from my mom that I’m sure she won’t mind me sharing a part of here, as examples of what I mean.  She was one of those many women who had lumpy breast texture by nature, and even went in a couple of times to get small lumps checked out (always benign).  I know several of you out there like that; I know others with some of the factors described below, so please take this seriously.  No one, but no one wants to go what I’ve had to go through over the past two years to stay alive thanks to rogue mammary tissue.  It’s not worth it, trust me, especially when there are so many other options.

For those who don’t know, my mother just made the very hard decision to have double mastectomies as a prophylactic measure — meaning she’s not had any cancerous or even pre-cancerous signs show up in her breasts but because she tested positive, as I do, for BRCA1, she decided to remove the biggest source of the danger before any problems showed up.  She requested meticulous testing of the tissue after the fact, to see what might have been hiding in there besides the known genetic flaw.  She picked one of the best surgeons in the Dallas area, and one who has actually organized a group to spread the word about BRCA and other genetic cancers.  She learned that although she has no active cancer cells in either breast, she has “lobular hyperplasia markers” in the right breast and “prolific fiber cystic changes at the cellular level in both breasts”.  Both of these increase your chances of breast cancer by 2-4% each.  That may not sound like much, but a nearly 5-10% increase on top of the 40-85% increase the BRCA mutation gives means that for her it was just a matter of time before something went wrong.  So she feels even better about making the right choice than she did before the surgery.  I hope in a later post to have a more personal account from her, perhaps even interview-style, of the differences in making a decision about prophylactic surgery, which seems to me on some level to be a much harder decision than when something has already gone wrong and there’s already an obvious solution to your problem (surgery or death), like I have had to deal with.

Scrape together, beg, save, or borrow, but if you have any reason to believe you’re a higher-risk person for breast cancer don’t live with that fear, go find out what there is to know, which is more every day thanks to all the help groups and organizations out there.  Don’t put it off with the “well it probably won’t happen to me” excuse; my mother had that as the perfect excuse — making it to her mid-50s with no major scares, breast-feeding two children with no problems as a younger parent.  And then look at her statistics; not very comforting, those.  The BEST she was looking at was someone 46% more likely than the average person to develop breast cancer, and the worst at 93% was practically a guarantee.  Don’t let that be you.  Do your monthly breast checks, sure; but if it runs in your family don’t stop there.  Find a doctor who will work with you to educate you on options, risk factors, and all the other things you can do to take charge of your own health, to live the longest your particular set of genetic factors will let you, rather than playing games of statistics with the universe.  (It tends to cheat.)

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