Archive for the 'wonder woman' Category

Aug 29 2011

writerly triumphs, upcoming cancer fears

I’ve been nearly-steadily working on getting my creative well refilled after beating back death (again, from a fiercer battle this year than last), so the good news progress on that front is:

I made it to a few parts of ArmadilloCon this weekend. Friday was a disaster and life lesson two-by-four all in one; I tried to essentially go by myself (with walker strapped to wheelchair), and didn’t realize just how hard it would be to push myself around, especially since the hotel had far more carpet than I’d expected (I’d remembered large expanses of tile, which there were in main areas, but not where the panels were held).  I managed to make it through one panel simply due to stubbornness of will, then found a friend who very kindly took me home.  At home I cried in frustration and felt nearly sick from the exhaustion, and bitter about not getting to do any of the things I want to do, and upset that my “last hurrah” before surgery was such a bust.

Waking up Saturday in a better mood, I spent most of the day napping and late afternoon my brain kicked in, and we worked out a solution where my helper used the front carrier to strap on Wednesday (who was apparently a big hit at her first con) and go with me to push me to panels.  We arrived late enough that I was only able to attend two more panels, but at that point it was the principle of the thing and I saw friends and took notes and went to panels just like a real convention, my first since this time last year.  Psychologically it was a big success, and of course I’m exhausted and sore and spent most of the day in bed and will spend most of tomorrow resting (with maybe a bit more movement and PT exercises that I won’t be able to do right after Tuesday) but quite worth the effort and I’m grateful to my Mom for providing the badge fee and my helper and another two friends for providing the rides to get me to and from.

I did a “create first lines” exercise with my writing group that was fun for me and seemed so for the others who participated.  I even wrote a couple that tickled the glimmer of possibly an idea for story, maybe, somewhere in there.  So that was a success as far as I’m concerned.

One of the next steps as I see it is to get back in the habit of the “send stories out — collect rejections — send them back out” routine I’d been doing so well at last year, so I asked my writing group which stories of mine that I’ve previously submitted for critique came first to mind as ones they’d like to see back out circulating.  Two of the ones they suggested are ones that have been out there already for months, so I sent queries out on those two, and at least one of the others they mentioned doesn’t really need further editing at least at the moment, so I am planning to find a market and send it out tonight (unless, of course, I fall asleep over the keyboard first as I sometimes still do).

I may have come to a decision about the novel I’ve been slogging over for years, which I think deserves its own blog post as possibly an interesting writer-process blog entry, and I’ve identified two characters from other stories that I think will be the easiest to start back on trying to write when I finally start generating new creative content.  I even have great encouraging words on those from that same writer’s group.

And then the anger and frustration parts:

I’m just now starting to get to where I can do more than one or two things a day without being wiped out.  I mean, there’s no way even a couple of weeks ago that I would have been able to try again on the con attendance like I did this Friday and Saturday.  I can’t get a straight answer about how my doctor is going to handle my pain med regimen when I go back into the hospital for surgery on Tuesday and it’s been working so I’d really like to not have to go backward on that end of things.  I’m angry.  I make the joke about having to get three mastectomies for two breasts but it’s not really funny, except in the life irony sort of way, it sucks. I trust my doctors this time but I’m still so scared.  So scared.  And admitting that in front of the world and everyone is hard, even if it’s a no-brainer, because I’m also the strong, beautiful, determined, fighter, role-model, hero, STILL ALIVE person that people talk about in the comments you leave here and tell me elsewhere.

But this is so hard.  So very very hard.  And scary, and angry-making, and I don’t want to do it even though it’s right and necessary to do.  And I wish I had more time to heal and enjoy the energy to write and help The Teen with his homework and feed Wednesday rice cereal messy-o-meals because on Tuesday I have to slog back from the edge of the abyss AGAIN in order to be able to do those things and I won’t be able to right away, and what if it takes long enough to heal and my baby girl grows fast enough that I’ll never get to safely hold her again because she’ll be too heavy for my arms to safely hold?

And I can heal, and I will, and I’ll even try to write about it so you know what it’s like as best as you can from reading about it.  But here I am, bloated enough from bed-rest and long-term steroid meds that I don’t look like me in the mirror anymore, emotionally naked, and the fear is so strong that writing it is the only thing that makes it smaller.

Caging it in words to show for you like a zoo exhibit gives me some iota of illusory control over the process, so here I am, and here it is:  I go in for double mastectomies this Tuesday, at 1 pm CDT, surgery expected to last 3 hours.  On the right side they will also take several lymph nodes along with the breast, and the remaining cancerous mass that has shrunk through chemotherapy to 2 cm from its previously baseball-sized visible lump under my arm.  The left side will be cleaning out the far-too-much breast tissue they left from last year’s mastectomy, though they don’t expect to have to remove any more lymph nodes.  They will be removing every bit of breast tissue they can find on both sides.  They do not expect to have to remove muscle, so send good energy that way if you have it to spare, as I would be left with lifelong arthritic-like symptoms if they have to take any of the muscle in the area, and the lymphedema brings enough of its own long-term side effects that I’d really prefer no more added to the mix.  They expect, given how close this is happening to the recent chemotherapy and other factors, that my healing time will be double the normal expected rate –so at least 12 weeks of active healing — and that doesn’t count the months of PT to get as much back of normal movement and function in the area as possible.  And that there will be at least one night spent in the hospital, but possibly more depending on how my body responds; so soon after a 9-week stay in the hospital, that in itself seems discouraging.

I have no idea how much, if any, it will set back the progress I’ve made in getting back my writing creativity, but I expect at least some.  I may have a baby 3-pound netbook, but I recall from last year even that was too heavy to manipulate for the first several days after surgery.  So expect a pause in blogging, though you might see me update on Facebook since I can do that from my phone.  I have a voice recorder I’m going to try to make sure is functional tomorrow as part of packing and prepping for going back in, in case I do manage to snag writing ideas out of this mess.

So the positive thoughts to send my way are: all breast tissue gone, no muscle removed, and speedy healing with no complications.  I’d really like some time and space to live this beautiful life with you beautiful people that surround me, and enough pain-less (not naive enough to say painless) functionality to enjoy it as fully as I know how.  And that’s pretty damn full — there’s nothing like two fierce battles with death to enhance the joy of living life.

4 responses so far

Aug 22 2011

From Death Into Life Through Truth (second verse, harder than the first)

We all know there are different ways to tell the truth.  I recall vividly a conversation with my parents when I was quite young — no more than six years old or so — where I had been caught in some lie (probably a minor one, don’t remember those sorts of details from the event), and they sat me down and had one of those Serious Talks about trust and the breaking thereof and why truthtelling was so important.  I don’t know what particular magic combination of words they said and my own personality were at work that evening, but it resulted in me not uttering a known or intentional lie for the next ten years, literally.

I was a strange child.

***

You have choices, even with bad doctors, but with the good ones, and the fantastic ones as well.  You have rights, as a patient, to know your diagnosis, to see your health paperwork, to have the results explained to you. There are ways, and then there are ways, of revealing the facts, of telling the truth of what is happening to you in a serious medical situation.  The finest ones know that one’s emotional state does matter in the battle for life, and the mind matters in affecting your matter.   The great ones will choose carefully how they reveal the truth of what is happening to you, all the while giving you the option to choose for yourself how and how much and when to know, or know more.

I have some of the best doctors I’ve ever heard of, and I know it’s part of why I’m still here writing this entry.

I am so very thankful of how some of the facts were revealed, and when.  This battle would have been so much harder had I known the full details and descriptions of everything going on from the very beginning, while trying to live through the worst of the pain that was filling every moment.  Meaning, when I went into the hospital the first time this year, after we’d done the C-section and could do more scans and they could find out more of what was happening inside me, they came to my room and explained what was wrong.

They told us the breast cancer had come back, confirmed that the very visible baseball-sized lump that prevented me from putting my right arm all the way down was indeed another tumor.  They explained that the previous diagnosis from last year had been incorrect, that it was an estrogen-receptor-positive cancer, and so pregnancy hormones had exacerbated the situation.  That it had metastasized.  And where: into the hip, and they gave the gory details on that since the pain from that one was what had driven me into the hospital at a 10+ agony level (over 8 cm large, partially in soft tissue and partially into the bone, wrapped around the sciatic nerve); and into the spine, where a tumor filled most of the the bony process of T12; and into other bones like the ribs; and into the liver; and into the lungs. And later on, discovering the T7 tumor pressing directly against the spinal cord and causing the left leg paralyzation and second hospital trip (this time in an ambulance) and two-month stay and extra radiation (not usually done with chemo — and another story). All the facts, ma’am.

And so treatment was discussed.  Such an aggressive cancer required aggressive treatment, and the facts that I was young and had otherwise a healthy immune system (and the special medical snowflake aspect we discovered later but wasn’t known then) would help in fighting it, and in dealing with the side effects of the aggressive treatment.  And so it did, and you’ll get that part of the story too, as we go along in later blog posts.  We didn’t spend much time in that first conversation, with my spouse and parents gathered around, in discussing exact cancer stage and type, or prognosis lengths, or too many treatment details other than the basics of what we’d be doing to fight it.  I kept asking questions; Dr. Carlos Rubin de Celis kept answering them.  He didn’t shy away from the tears as I asked, or try to shut me down as a layperson unable to understand, or get impatient when I repeated a question I’d already asked before while trying to understand better.  Every room visit of his I’d have a page full of questions, and he never acted rushed in spending time answering them.  And still, his skill at how he gave the facts of what was happening to my body throughout this process did not become fully apparent until a week ago, when I attended the appointment where we discussed the “new baseline” from the latest scans.  From where we began, to where we now are after 34 radiation sessions and 6 chemotherapy rounds and endless experimentation with pain management and two months in the hospital.  Basically, where we go from here.

And I learned fully why I’d overheard some of the nurses referring to me as a terminal cancer patient, earlier on in the hospital stay.

Hip: from where it began (described above), to now completely gone.  I got to see the before/after picture of this one, it now looks identical to the other hip, and completely normal. (On the surface; one can’t see as easily on the basic picture the many many little holes the tumor left behind in the bones that we will be treating for the next two years at least — but that’s also another story for a later post.)

T7: completely clean.  (Also got to see this “before and after” picture.)  Massive residual pain from damaged areas that will heal slowly, but will heal.  (Already I need slightly less pain meds than I did when I got home, and that will continue to decrease.)  The area around the spinal canal is clean all the way up.

Spine: there had been signs of cancer is essentially every other vertebra throughout the lumbar and thoracic region.  I asked for and was shown these pictures when I was ready (around the middle of treatments), and the light and dark areas alternated, with light being signs of cancer, in an almost regular pattern.  Now, all dark and clean.

T12:  Presumed clean.  Since this was entirely within the bone it’s a bit harder to confirm without a biopsy, and both the doctor and myself are hesitant to do that; what if we drill into the one area that is solidly keeping that vertebra strong enough to heal properly?  So we’re going by monitoring my pain and mobility and in how it compares to the others in the scans, since it was one of the three areas receiving direct radiation treatments.  Dark and no more painful than anywhere else that hurts, we’re calling it clean.

Ribs/sternum: clean.

Lungs: From a “paint-splattered” start with small spots scattered all over, to nothing visible. Clean.

Breasts: from the original visible underarm large lump to a 2.4 cm mass that can’t even be easily palpated.  The surgical oncologist,  Dr. Cherico (a quirky guy who’s been in the business since before port catheters were invented, wears cowboy boots to work, and apparently plays country music during surgeries) laughed when I said I want all the breast tissue gone if he has to vacuum it out, and assured me that he’ll be removing all the breast tissue as well as as many lymph nodes as needed.  He also doesn’t expect to have to remove muscle, thankfully (though if he finds differently on the operating table he’ll do what’s needed for clean margins) and answered my questions fully and carefully: a fine match for Dr. Rubin de Celis on my oncologist team. But the mastectomies are yet another post topic.

Liver:   Here is the part that inspired the tone of this post.  The only remaining anything that can be found after this long, painful, and scary trial are four very faint spots on the liver, none larger than an inch in diameter and easily missed if you weren’t looking for them.  But from where it began…well, the only colorful descriptor I’d heard before was that my liver when I came into the hospital looked “like swiss cheese”; last week I found out that what that little phrase meant was that the original scans showed tumors that were too numerous to count, several of them up to softball-sized diameters.   All I could think was “where was the liver in all of that?  How was there anything to grow back? No wonder they treated me so nicely, they weren’t expecting me to leave the hospital after I’d checked in with all that.”

And that type of truthful description of what was happening inside me was exactly what I didn’t need to hear, back when this all started.  The fear, the pain, the terrible nature of what I was facing was already so great, to have heard that would have brought the despair to a level I’m not so sure I could have come back from.  I’m sure if I’d asked to see all the pictures from the beginning they would have shown them to me, and explained whatever I’d asked about what I was seeing.  But instead we got a truthful explanation, I didn’t see pictures until there was actual progress through the treatment, and I didn’t have to face night after night of nightmarish images parading through my head of disintegrating organs and bones made even more realistic by the actual images of that happening.  (Sort of like the difference between reading a book and watching its movie; the book frees the imagination to wander all over a landscape, the movie tends to lock in one’s imagery to a set picture that is terribly hard to change to something different once you’ve seen it.)

So, the conclusion: from terminal level, how-is-my-body-still-together metastasis, I have 5 spots left (all an inch or less in size), one of which will be gone in less than two weeks, and the other four which could still conceivably be those softball-sized tumors finishing dying (the scans were taken a little over two weeks after the last chemo treatment).

This is what my doctor calls an emphatic success.  We will continue to scan every two months. I’ll be put on anti-estrogen medicine.  and if the worst happens and those spots decide to grow instead of fade away, my doctor casually and confidently states that “he has plenty more tricks up his sleeve” that we haven’t even begun to try.

Me vs. cancer = I win.  Again.

8 responses so far

Aug 19 2011

Thoughts on Doing Too Much

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

Sometimes you gotta.

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

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

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

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

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

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

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

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

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

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

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

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

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

3 responses so far

Jul 29 2011

Home Again, Home Again (too much Jiggedy-Jog)

Discharge ended up being Thursday instead of Wednesday, due to (Body Process Alert) several days of diarrhea that was a first as a symptom during all this and since it lasted 3 days in a row (while in the hospital, a week all together) they wanted to hold me for testing.  This was disappointing of course, but no infection found no reason to delay further discharge.

A week later and i find myself almost wishing I’d stayed in another few days.   Not because it was fun in the hospital, but there have been tests and appointments every day since I was released and it’s incredibly exhausting.  I also had to get my first blood transfusion before being released, which on the one hand feels like a set-back, but on the other hand according to the doc is something I probably should have already had to do, so my Special Medical Powers have come through again.  Managing the meds is still a learning curve but way easier thanks to Living in the Future (smartphone app that is a great med tracker).

Anyway, a white blood cell count booster shot every day from Thursday through Tuesday’s chemo, another WBC booster on Wednesday, nurses coming to the home twice to check on me, an occupational therapist yesterday, and physical therapist tomorrow…all of which involve walking and movement when my main exercise for two months has been up and down a hospital hall and around my hospital room make for a wiped out Reesa.  I’ve still managed to go out to eat with family (bald head, walker, and face masks will get you some funny looks in public, did you know?) and eat way too many Reese’s Pieces, and get great baby time (which is good but itself exhausting), so it hasn’t been all bad.

The live-in help is working out well so far, getting along with the family members and learning the ropes of the job.  Since we’re inventing the job as we go along it’s a bit of a creative process; I expect it to take a few more weeks to really settle down into a good familiar routine.  It’s complicated by the fact that since I haven’t been home for two months everything is rather disorganized, and the urge is of course to Clean/Organize All the Things!! all at once.  Ha.  Instead we’re taking it a piece or two a day, which is much smarter and still results in visible, even if slower, progress. Training the other household members to be aware of leaving deathtraps in the thoroughfares (like shoes and such) isn’t as difficult as I’d thought it would be but is still ongoing.  Training myself to do less on my own and ask for more help from the help we’re paying for is a harder process but one I’m working on and improving as well.

Visitors and gifts of chocolate milkshakes (my current obsessive treat when I’m not eating Reese’s products) or other food/gifts/pleasant time shared are still quite welcome even now that I’m out of the hospital.  I’ll still be under neutropenic restrictions for the next few weeks so send your love from afar if you or people you’ve been around are contagiously sick (allergies don’t count, sick co-workers and children do).  Depending on energy levels I might even be able to go out with you on a shared activity such as a quiet lunch!  Otherwise, if I’m not occupied with appointments or baby time I’m still attempting to write and work while passing out over the keyboard, so not much seems changed from the hospital quite yet.  (I even have a hospital bed at home to sleep in to help retrain my body to sleep in different positions.)  though last night I had my first REM sleep that was completely disconnected from real-world happenings in months, so that’s some progress at any rate.

Lesson of the week: when going to a place I haven’t been before, make sure to take the prescribed wheelchair, as I’ll be traveling unknown distances and I can only go short distances in the walker.  Thankfully in this case, we were going to the hospital over the weekend for my WBC booster shots and since Dad was my ride I could use my stepmom’s motorized wheelchair (which was way more fun than my normal one anyway).

Ladies, don’t forget to do those monthly breast exams.  Not only do you not want breast cancer, you REALLY don’t want metastasized breast cancer destroying your skeletal system.  Much, much harder to bounce back from.  Even though I plan to, and shall to the most I possibly can, YOU can avoid that problem while it’s small and manageable and you aren’t paralyzed in your own kitchen or spending two months recovering in a hospital away from your new baby daughter or any of the other ridiculous things I’ve had to go through.  I’ll keep blogging about it, as I think it’s important for people to know what something like this is like, but never worry; this won’t become the all-cancer, all-the-time blog as I’m a Thriver, not just a Survivor, and there’s more to this life than living through cancer.

2 responses so far

Jul 18 2011

Crazy Hospital Happenings

You know it’s finally time to get out of here when the new admittee across the hall is not only ill, but suffering from some sort of dementia that is causing him to repeatedly yell “help!! help!! get out of my house!!” Which means the rest of us get late meds and short shrift as the poor overworked nurses have to deal with the crazy person they didn’t even get warned about.

Thankfully, it looks like discharge date might be sometime Wednesday.  We’ve got a trial-period live-in help, a pain regimen that is working CLOSE to what we want and may very likely work better once it’s more under my control and not dementia-distracted nurse control, and I’m working on my PT to rebuild my muscular system to help protect my poor hole-riddled skeletal system.

I’m sure you’re all anticipating the story of the saga of how I switched from a near-”terminal” cancer patient to one who is riding out Wednesday with a good chance of years’ more survival, and I think writing about it in bits and pieces will be good for me and my continued healing.  Along those lines, please any of you feel free to ask questions about particular things you’re interesting in hearing more about from the last two months, it will help me get some focus since, my goodness, there’s so very much to write about.

2 responses so far

Jul 16 2011

Body Memory Quirks

(EDITING NOTE: Sorry about the run-together editing fail on this post; I’ve tried a couple of times to fix it and can’t seem to figure it out at the moment, and have run out of chemo-patience to keep trying at the moment.  enjoy the post anyway and I’ll try to make it prettier tomorrow.)

One of the repeated lessons of cancer (of course it can also be learned elsewhere) is how impactual and overwhelming the body’s memory can be.  Apparently according to the Urban Dictionary, the phrase “body memory” is often used to imply repressed memories of physical abuse, but that’s never been how I use or even conceive of the phrase.

This is not to deny that sometimes, some kinds of touch can cue legitimate, real memories. However, to infer abuse from physical symptoms in this way is utterly invalid, as is the inference that conscious, recallable memories can be stored in muscle tissue.
That last phrase is the part I think I disagree with, based on personal experience, though I concede that there could simply be a better or different phrase to describe the phenomenon to which I refer.  (Or more likely, a part of the brain that runs so deeply it never shuts off even at densest sedation.)
Last year, for example, I recall the first day coming home after the mastectomy surgery, where there’s no possibility of actual, full-night’s sleep, sitting propped up with pillows all around with my mind in a twilight state.  These strange images and feelings of sharp lines being drawn across my mid-chest, and dark shadowy forms looming over me kept recurring.  It wasn’t at all like a normal “dream”, and at some point in some story I’m sure I’ll try to better describe it to delineate the difference.  It very much felt as even though my mind was under general anaesthesia, my body was remembering the experience of people standing around me cutting me open and removing pieces of my body — which was indeed what was happening at the time.
This time around, I find that even though my mind is certainly ready to go home, be with my family (including new baby!), and continue my LIVING, non-hospital life with joy in every day and every breath, my body experiences a hitch of panicked feeling when trying to think about the process.  This totally feels like it’s happening because my last memories of being at my home are of being partially paralyzed — stuck in the kitchen, unable to move my leg unless I was physically picking it up, crying and terrified with no help and no way to fix it, (TMI WARNING AHEAD) wetting myself because I couldn’t get to the restroom because I was literally unable to move my left leg forward no matter how hard my brain sent the signal to my body.
And of course I know that won’t happen this time.  The reason for the paralysation is literally no longer there (the culpable tumor that was pressing on my spinal cord is according to the doctor “gone gone gone!”); I’ve been walking in the hospital around my room for weeks now without assistance (from people; I’ll be using a cane and walker for a while to come).  I’ve been working with physical therapists while here to relearn what proper movement and alignment feels like.  I’ll continue that work when out.  We have live-in help lined up to make sure that in a sudden resurgence of worst case scenario (that won’t happen because of regular scans and constant work and vigilance) I won’t be stuck with no help.
And still there’s that hitch moment, that brief flash of panic, that seems to come from the body itself, its own memory of what happened, overriding any rational thought or mind memory.  Of course I’m talking about it in therapy sessions, and working through it, and it won’t stop me or slow me down any more than the rest of this has, and less than most of the bad things slowing me down.
Life is a strange, strange thing.  Does anyone else out there have their own “body memory” stories to tell?

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May 06 2011

in-between

Dealing with Medicaid is a special hell, in terms of getting things scheduled and actually done. Each procedure needs “pre-authorization” that takes anywhere from 1-5 days, so nothing happens on a speedy time frame and there have been several re-schedules due to the authorizations not going through.

Radiation finished up last week, though the effects will be ongoing for a few weeks according to the doctors. Skin irritation on the abdomen, and some variable and lack of sensation in the anal and vaginal areas continue, hopefully as temporary effects. Hips are definitely still quite unstable, and the left hip continues to have very uncomfortable problems that make me think there is something bad happening on that side beyond compensatory imbalance. I definitely want to be wrong on that feeling.

We did another chest/abdomen/pelvis CT scan post radiation today (finally, after 3 reschedules) so that will hopefully tell us more about whether there is anything newly wrong on the left hip, as well as the progress so far from radiation treatment. It was painful and I was unable to straighten my left leg, thankfully we could arrange pillow props under my knee and still do the scan I cried and had to break once to sit up for a bit, but didn’t scream so that is some improvement from when I first began radiation a few weeks ago. Next week we have a consult for installing a port catheter in my chest for chemotherapy (and hopefully also the install itself, assuming we successfully navigate the pre-authorizations). My medical oncologist said that while the port will be sore for a few days, there’s nothing stopping us from beginning chemo right after it is in. So possibly as early as late next week, almost surely by the week after, I’ll be beginning chemotherapy treatments. We will do some number of these, every 2-3 weeks depending on how my blood cell count keeps up and in healthy ranges. Then we’ll schedule a mastectomy, which for me can’t come fast enough at this point because the lump under my arm is getting to be in the way and really painful. I am hoping it responds well to chemo so I can get some relief before surgery, but if it keeps up this bad I will of course be talking to the doctor to see if we have other options sooner like radiation for that spot or something.

I’m actually reading a couple of books, which I haven’t done in quite a long time. It’s good, it’s sparking writerly thoughts, unsurprisingly. My brain seems to be taking on the logistics of figuring out how it wants to be working during all of this madness, which pleases me since it’s a good brain and generally solves those types of problems well. Patience with the progress is a little trickier but I’m managing it admirably given everything else, I’d say.

I keep promising baby posts but reneging; hopefully I’ll quit being that naughty. In the meantime, still perfect baby, still awesomely low maintenance, still gorgeous and developing her superpowers daily. If you’re local, come meet her and join her fan club!

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Nov 22 2010

Process Analysis Progress

I think I’ve mentioned that I’ve been doing some deep internal analysis of writing process, which connects to everything else. As I get more of my baseline health back, and as my other life commitments aren’t dwindling anytime soon (family care, house care, self care, etc), I find a greater and greater need to efficiently manage my time for maximum productivity throughout my life.

I didn’t have to worry about this balancing act nearly as much, before. I was one of those people who regularly seemed to have enough accessible energy for two people. (Note: It’s possible I still do have near that level of reserve, but can’t as easily tell because so much more energy is tied up in recovery/body maintenance these days.) I would get tired, sure, but I very rarely was unable to fit all of what I wished to accomplish into a day, in terms of the energy spent on tasks (timing is a different story).

This was one of the harder things to adjust to, before and after cancer surgery. I had a lot of internal resistance, and resentment, and stubbornness bordering on denial, especially in the early months. I loved being Wonder Woman. I never really took it for granted, as I have family members and friends with chronic health issues that need careful energy management, but I was quite glad not to need such adjustments for myself. Until I did need them — then I was quite glad I’ve always been a person who pays attention to things; while learning a new level of energy management was frustrating, I also had gathered quite a few tips and information on how to go about obtaining that knowledge while observing others close to me. My stepmother in particular is fabulous about knowing how and where to spend her daily energy, and even when to push her limits and pay for it later vs. when to rest and cancel or reschedule something.

After surgery, managing my daily energy was mandatory if I wanted to both heal and get anything else done at all. And since life doesn’t pause for death or near-death, there was certainly a good amount that needed doing, that I could possibly do, and wanted to do. And still at first my mind tried to negotiate, make end-runs around necessity, push just a little harder than was wise. Seeing those closest to me dealing with their own brown-outs from the crisis didn’t help that urge subside. I spent most of my time in the first few months post-tumor doing nearly as much of the sitting and resting as I was doing before surgery. Somewhere in there, I made a very important internal shift in thinking, which is complicated in nuance to describe but I shall try.

Without giving up my belief that I can eventually have most of my “old self” back (helpful psychologically at this point in recovery), I started to accept the realities of the now, where now there were certain things I needed to track or do or not do daily in order to keep healing and keep doing more in general. For example, through the past several months and continuing currently, I must take a daily nap for maximum energy availability. Up until the past six weeks or so, I didn’t even have much choice over when that nap happened. It’s yet another sign of healing progress for me to recently regain some measure of control over when my nap happens, and that change has freed up several schedule pieces to be a bit more flexible about what activity happens when.

Right after surgery I was up for no more than sitting in a chair, my main activity for the previous year. By the end of the second month afterward I was doing light house duties (no lifting), and writing sporadically, and doing moderately all right at family care. By the end of the fourth month, I was functioning for most of a day (with lots of rest) but flailing on balancing all the different desires and responsibilities of daily life. By six months out, I was still nap-dependent (and sinus ick gave me the equivalent of a couple steps back in progression of health for another 6 weeks or so) but managing to get more than half of my daily tasks and commitments to some level of completion or to the next rest point. However, my writing consistency was still far more erratic than I wanted it to be, most often conflicting with needed nap-time.

Now, eight months out from surgery, my stamina is still the slowest to come back online, but I’ve gained nap timing flexibility if not yet nap exemption. I’ve learned how to fit writing in daily — at least theoretically. The next post will focus more specifically on the writing-process progress over the last several months. I’m still not getting done everything I want to in a day, but who of us really does?

Thankfully, I don’t yet feel as if I’ve reached my recovery limits. I also know I will reach them eventually, and that the post-cancer healed me will very likely not have the same energy capabilities of pre-cancer me. Some days, I still push against that knowledge. Other days, my interminable positive attitude is determined to find ways to get as much back as I can — but much more healthily than before.

The biggest change in this area is that I no longer have a significant urge to push my body past its current limits, the way I sometimes did previously. It’s so much easier to give myself basic needed self-care that I have to remember my own perspective shift when listening to others who are still struggling with this learning. I’d love to find ways to communicate in a way for others to viscerally understand why this is so important to monitor and take care of, without them having to go the near-death experience or life-crisis route to learn that.

You will die with things left undone. You can’t escape that reality. To me, therefore, it makes more sense to focus your efforts on doing the things you genuinely want in your life, managing or outsourcing as much of the life-maintenance stuff as you can, and letting go most of the stress over the rest. Post-cancer, every goal, every task, and everyone currently in my life are deeply wanted, and worth spending my daily energy on. That doesn’t feel like a priority likely to change. How do you manifest this in your own life?

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Nov 11 2010

A self-congratulatory moment

So far this year I have managed to write eight short stories and send off stories to 30 different markets. My most productive year to date, and that’s not counting the ongoing Callie blog project or the novel work. And there’s still a month or so left to do more!

While that might sound reasonably impressive, the cool points shoot way up when you add in the fact that all of the short stories and story submissions mentioned above happened after almost dying at the end of March this year.

I’m so totally working on correlating Jay Lake’s theory of psychotic persistence as the key to writer (or any) success… now some story acceptances would round out all that hard work nicely, hehe.

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Oct 01 2010

Cancer Chronicles: State of the Writer

Energy and stamina are still coming back online from being almost dead and the subsequent recovery.  For your information, being almost dead is apparently really draining on the body’s resources.  Surgery also.  Combine the two and you’re looking at a minimum of several months of not-optimal functioning — and that’s if you’re healing rapidly!

As you can imagine, any major change in activity or health during this time will slow down recovery even more.  Since surgery, I’ve taken back over house management duties including meal supplying and prep; taken on full-time parenting duties, including two hours a day of chauffeuring; had several weeks of sinus drainage and subsequent nausea; and one or two other things I might discuss elsewhere that are nevertheless similarly physically draining.

Needless to say (but I will), the writing has suffered.  Surprisingly, I was actually managing to sustain regular writing and editing up until this month’s sinus/allergy attack (fuck you, autumn).  The past three weeks I’ve averaged maybe one or two writing sessions a week (mostly blog entries, though the Callie ones definitely count for writing), and tons of reading research (back to the Crime Library and Wikipedia).  This is significantly down from 4-5 sessions a week plus research time, much of that non-blog writing.  Le sigh.

I’m obviously past another level on the path toward pro if I’m whining about ONLY getting 1-2 writing sessions plus research time a week like that’s slacking.  Which, for where my writing is at and needs to be, it IS slacking.  It’s good to remember where I’m at and where I’ve been, how doggedly I kept writing and editing up to a week before surgery, how quickly I was back to it afterward given my health levels (research from the first week out, writing from a month out).  And also remember how much I am daily pushing my body to the limits of what it can do, so that I can extend those limits, and how careful I must be to not over-extend past limits — there’s a very important difference between pushing and pushing over.  And one thing the cancer experience teaches even us incredibly stubborn over-achievers is how to discern the healthy side of that limit line.

I’m mostly past the sinus stuff.  My always awesome and excellent editor Mary Bass (message me if you need contact info for pro editing!) has given me edits for most of the stories I currently have finished (there might be a couple I haven’t dug up to send her yet somewhere).  This weekend I might even get some editing time in on updating a few.  I suspect over the next few months I’ll ramp up and wrap up a few large outstanding projects as well as meet my “stories out circulating” goals.

And then I’ll take a month off to just read.  Read for fun, what a shocking idea!

After that it’ll be time to start the second novel.  Which already has half-a-dozen people eagerly awaiting it.  That’s a nice feeling.

Staying alive is definitely worth the journey, but only if you fill your life with as much love and creativity as you can fit in.

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