Archive for the 'not with a whimper but a bang' Category

Sep 13 2011

rough week, sloooooowly improving

Well I took a short break from PT these first two weeks post-surgery; I just couldn’t make myself keep getting up and pushing physically when I was already pushing mentally and emotionally to heal, heal, heal, keep watch on house management, help The Teen figure out a better after school strategy in the midst of a surge of attitude and angst, hurt hurt hurt, figure out writing kickstarts, wait for shoes to drop, heal and hurt, hurt and heal.  It probably wasn’t the best choice; keeping moving and exercising really is one of the better and faster paths to health, but I just ran out of self-push on that front.  Spent it all elsewhere.  I’ll be slowly starting back on it this week, but carefully, of course.

Today I went into the surgeon’s office for a follow-up, and of course, not as fast a healing as I’d like.  Well, I was warned about twice the healing time for this, plus less activity I’m sure hasn’t helped.  But there’s nothing terrible happening, just slow healing.  I had half of the staples removed on half of my right side (heh), and half of the staples removed on all of the left side (every other one).  I was told that it’s looking really good, even though it’s still producing quite a lot of fluid and is swollen, so none of the four drains came out. (A mixed blessing; it would be nice to have healed enough for drains to come out, but as I recall, that hurts, quite a bit.) I actually think one of my JP drain suction cups has a leak somewhere (based on something that happened tonight), I’ll get them to take a look tomorrow.  I have another follow-up a week from today with this surgeon, I expect at that point I’ll get at least half the drains out and switch from staples to surgistrips.  He also told me to use hydrogen peroxide on the drain openings, which continue to hurt more than most other places on my chest (the swollen areas under my arms are a mix of numb and big hurting).  The backs of my arms are also really painful and swollen, so we’ve been wrapping them to try and keep the fluid draining out and toward the center of the body.  I have gained by far the most weight and am the heaviest I’ve ever been, due to the summer’s inactivity and the steroid drugs I’m on; however the good news is I’ve already lost 30 of that in the last two weeks (mostly fluid, though 8 pounds of it was breast, hehe).

I have another appointment tomorrow, this one a big one with my favorite oncologist, the fabulous Dr. Carlos Rubin de Celis (for anyone looking in the Austin area, I’d commute to follow this guy and keep his services, that’s how good he is).  I get some lab work done, I think we’ll be scheduling some scans; it’s time for the monthly medication renewal so we’ll also be discussing that.  I had been starting to ramp down on pain meds but the surgery pushed me back up to where I was, and in fact I’ve been using a few more of the pops than before.  I think it’ll be ok; he trusts me to pay attention to my body and tell him what’s going on, and I trust him to listen and help me change and stay on top of things as needed for best pain management; it’s a good arrangement.   We have a plan for how to affordably start me on tamoxifen (an anti-estrogen drug) that we’ll be discussing tomorrow again to make sure it’ll work the way we think it will.  I’ll also be receiving my next Aridia infusion.  This is a bone treatment that he says I’ll be on once a month for the next two years at least.  It’s designed to both prevent any future cancer encroachment into the bony areas that were previously affected by the metastases, as well as help assist in the healing of those areas previously damaged.  I’m not sure about how Aridia itself affects my body, side-effect-wise; I probably won’t have a clear picture of that for the next couple of months as it’ll be all mixed up in the mastectomy healing process, but I’ll keep reporting what I notice, when I do.  I’ll learn more about tamoxifen side effects tomorrow as well.  A walking pharmaceutical package, that’s me for the long term, I guess.

Realistically, I’ll ramp down from the pain meds over time, we hope; the damage is still very much there but there’s good reason and hope to believe that it will lessen over time even if not go away entirely.  My mom and I even came up with a clever solution with the help of a nurse for weaning off the pops when the time comes. (I don’t have an addictive personality, but recognize that habitual behavior is its own thing, so I’ll switch to mini tootsie pops or dum-dum pops when I feel the habit but don’t need the drug.)

(TMI warning) One concerning side effect that continues is near-incontinence; I have a much shortened time warning on when I need to urinate, especially when waking up.  This is likely from the radiation, and the RadOnc believes it will fix over time; she says that for those whom it’s permanent damage, it happens during the day as well.  While I’ve had it happen during the day, it’s always when I’m concentrating too much on things like writing, and ignoring the early signals.  If I don’t ignore the signals, it’s not a problem, so the daytime stuff is my own fault and I just have to wait for the nighttime stuff to heal itself over time.  There have been very few accidents thanks to the bedside facility, several close calls and only a handful of missed ones.   (Tonight for example, woke up fine and no misses! yay)

I’ve also had some radiation recall come up, which is skin irritation and/or discoloration (in my case definitely irritation, bah) that is exacerbated by the time spent in bed, so that will hopefully lessen as I get up and moving around more again.  This most often happens when you have to have extra radiation treatments, which if you recall I had to get a second round of 20 radiation doses while on chemotherapy, a scenario they try to avoid when possible due to just such side effects but which was necessary in my case.

This coming weekend links post has some cancer ones in there.  I don’t like to think about the death aspect of it, how close that sits over my shoulder, even though realistically I know that death sits no further away from any of us, really. (Wildfires, car accidents, random violence, anything can snap out that light much more immediately than what I’ve fought off twice now.)  I hope that my loved ones can all continue to treasure my presence and what I give to their lives by being in it; the more I heal the more I have to give, the more I love to give.  The healthier I am, the more I can do and the happier I’ll be, and I hope my friends and family can believe in me along those lines, that you are all so important for me to have and hold and love and lust for and live for.  It’s been a vicious and long road, with no promises there won’t be future sharp rocks along the way, but I’m passionate and dedicated to the ones I love and I WILL keep climbing those rocks.  I look forward to feeling your supportive presences alongside me as I do so.  Patience is one of the hardest traits to keep hold of during these crises and healing times, and sometimes even I want to scream   at the universe for a fucking break already.  Having you there with me makes such a huge difference; even if we’re screaming at the unfairness of it all together, that “together” is what makes it so much easier for me to keep going, keep healing, keep surviving, keep thriving.

Comments Off

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

Jan 14 2011

Quickie Question: writing and routine

I have a couple of longer Cancer Chronicles posts brewing, but no brain for longer things this week. So I will throw out a quick question instead, for any writers reading as well as anyone else who regularly uses established routines to create art or get larger projects done.

What are the ways that you continue to create/work on projects when life inevitably brings disruption to those normal routines? How do you (personally) quickly get back on the wagon if those disruptions do interrupt your work?

I recognize that part of my problem is working with a bit less than a healthy person’s energy levels while trying to do as much or more than said person’s average workload. So I’m not castigating myself for struggling with juggling. However, writing regularly seems to be the thing that falls off first when major routine disruptions (like a month of travel and holiday busy-ness) happen, and that’s less ideal. My ideas for solving this are mostly nebulous (other than what I’m already trying of setting small daily/weekly goals and working up from there), and I’d like to hear how other people manage such things (or don’t).

(Also also note: I’m griping about lack of momentum during a week where I finished a novel chapter, revised a story and sent it to the writer’s group, and wrote this post. So we aren’t talking NO progress here, just not what I’d feel more satisfied and less stressed about getting done.)

Looking forward to your comments!

4 responses so far

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?

Comments Off

Oct 12 2010

Seeking Your Bliss (and Sometimes, Finding It)

There’s a large amount of screwed up social programming floating around out there, and few people escape its tangles entirely no matter how enlightened you attempt to be.  A good upbringing helps, and a strong self of self does as well, but you can’t avoid every message that gets repeated at you from the surrounding world.  The best you can do is learn to analyze your own behavior to identify when certain thinking patterns have been heavily influenced from outside sources.  Even then, that doesn’t mean you automatically jettison it; quite a few social structures exist because they really do make getting along with your fellow monkeys easier.

One area I’ve managed to avoid (for the most part) myself, is heavy neurosis surrounding what I do for a living.  All of my blended family of origin has a strong and principled work ethic, so I was certainly influenced by that while growing up.  What I remember more, though, is the sacrifice they and so many of my parent’s generation made:  several of my parents ended up in middle-level corporate-style jobs because that was the easiest way to stability for a family, not because they were passionate about what they did.  (At least one was doing what they liked by the time I knew them and that was a good perspective to see.)  I don’t remember them complaining about that choice, and as the years progressed I got to see them successfully change where they started from into something they DID like more, through excellent work and additional education.  But from my child mind’s perspective, one of the largest messages I took away from observing this is that I absolutely did not want to stay long in any job where I wasn’t being challenged, or didn’t care about what I was doing.  Thankfully, I also had the sort of family where making my own way was encouraged, even though my early career goals were certainly an attempt to balance doing my own thing with the concept of job security (like choosing veterinary science over acting).

My first job was a crap McD job to learn what the working thing was all about, and I still managed to learn how to do every non-management job including the grill.  My next job I decided to do something closer to what I liked, and worked at a local pet supplies store.  The next two jobs after that were at veterinary clinics, since that’s what I wanted to be when I entered college.  Unfortunately, working at vet clinics helped me realize I didn’t really want to deal with pet owners for the rest of my life, so I had to do a quick life goal readjustment.

In the meantime, delivery driver seemed like fun, and it was!  Minus the fact that what I earned during those several months just about covered the car repairs necessary due to the wear from delivery driving.  The next couple were crap jobs again, due to the fact that my ex wouldn’t hold a job himself and my scholarships and loans didn’t quite cover the room and board for two people alone.  But I fairly quickly during that time realized that even as a scantily-skilled college student, I could still choose to go for the “crap jobs” that were more intellectually or socially interesting, or that actually contributed in some way toward learning new skills, over mindless drudgery.

During this time I also embraced the “jill of all trades” philosophy, a bit of an iconoclastic departure from the “pick a job and do it unto death or retirement” programming so prevalent at the time.  I figured since I was smart and quick to learn in so many different areas, it would be pretty limiting to narrow down to just ONE area of focus for my entire working life.  I was still in school then, and still in an animal-intensive major (Animal Science), and switched to a crazy-intense summer job working with horses that probably merits its own post one of these days.

The three years as a Biology Dept inventory clerk probably sound tedious to some, but getting to organize data and inventory and go into cool science labs to find mad-scientist equipment with a barcode scanner at night when no one was around were definitely fun.  And my first major trained-skill career, body piercer, was absolutely something I wanted, sought out, trained hard for, and did for years.

Even my Freebirds time was useful.  After a particularly rough and desolate patch job-wise (third-shift custodian — definitely a crap job, but I learned a ton about classist assumptions among other things), during which I was also isolated from family and friends geographically, I thought I’d try the siren call of the steady paycheck and benefits, but went with a small corporation instead of a big megacorp, thinking it would better suit my inclinations. (I also moved closer to friends.) I was the fastest promoted female from crew to general manager in the company, and in case I ever need it I have restaurant managing skills to fall back on.  (Sadly, if I want to manage my health to live some semblance of a normal lifespan with my new health condition, I probably can’t realistically do that again because of the body energy load.)

Owning a small business is a leap I definitely wanted and worked my butt of to achieve, though health issues have absolutely made it much harder to maintain than it would have been otherwise.  I likely won’t own this shop forever, as I hope to be able to someday sell it to the employees who have been so awesome working for me, but I might own a business again in the future.  I have confidence if I do I’ll be much more versed in the common mistakes and able to avoid them.

Now I’m a home-based mom, and anyone who doesn’t know THAT’S a full-time job obviously grew up under a rock with no parents.  I also manage the flow of the household (with lots of help!), making sure chores and food and re-supply and all that good stuff happens when it needs to.  Additionally, I’m working on a full-time fiction writing career, and while the full-time part has definitely suffered while I adjust to the other new jobs, I still do something writing-related every day, even if it’s just some research.  (And with my projects, it’s never “just” research.)  I don’t have time or energy for creative hobbies at the moment with all the other work-load, but even that I expect to change with time.

It was evident even while I was still a kid that the world was changing, and it wasn’t going to be as easy to stay with just one career for an entire working lifetime.  As an adult, I’ve previously considered returning to school for something like nursing (job security anywhere you go!  high demand!  flexible hours! good pay!) but no matter how shiny all those other bits sound, I strongly suspect I wouldn’t have any more fun dealing with sick patients and their families than I would the pet owners as a veterinarian, especially those many many conditions where people willingly keep engaging in the behaviors that keep making them sick and don’t follow health advice.  I’m not sure I want that sort of extra stress, and I don’t really think the job security and benefits outweigh the impact, especially long-term, of such chronic stress.  I’d say that as a cancer survivor I have to be concerned about the impact of stress more than most people, but that’s a lie.  Stress damages or kills anyone given enough time and presence, so it’s in everyone’s best interest to not take on avoidable stress, since life gives us so much of the unavoidable kind.

These days, if I go back to school, it’ll likely be for a psychology-related degree, since one thing I never get tired of is the workings of the human mind.  I think that fascination would definitely sustain me through the stressful parts of that career.  Plus, it’s a job I can largely do sitting on my ass and thinking, and I’m now of the opinion that the break-your-back on-your-feet go-go-go jobs are for the teens and twenties time whenever possible.  I’d like to actually live a long time in reasonably good health, and I don’t think it requires a round of cancer to teach one about the importance of energy management.  Unfortunately, too many people (far too many) wait until such a health crisis (and possibly some measure of irreversible damage) to make those life changes.  If they do even then.

It is not easy.  It’s not easy to work against classist disadvantages, and might not even be available for everyone given our current societal structure.  But it IS possible.  It’s hard to work against the “shoulds”, like “I should stay with this soul-sucking job because my family needs a paycheck” — and that, too, might not be avoidable if you don’t have a partner or support network willing to help you through such a transition.  But it IS possible.  And for those of you that DO have the education or latent brainpower to learn what you want to learn, and have a family that is willing to work with you to make sure everyone’s goals can be achieved…

Well, where are the remaining stasis holds?  (Not a rhetorical question)

If my Fearless Readers like this and want more in the same vein, I can easily go on.  Ask questions, discuss your own perspectives in comments, share!

8 responses so far

Aug 02 2010

Cancer Chronicles: Denying Death’s Due

Had a conversation with a friend yesterday that was interesting (as all of my friends are).  She mentioned that she thought she had been in a lot of denial in the few weeks leading up to my surgery when I was, essentially, dying.   That she just refused to think about how sick I actually was and what that meant.

I agreed with her, remarking that even though I knew what was going on, I wasn’t articulating it, to others or myself.  Facing likely death, having chosen life over and over since my birth, I relied upon the strength of the genetic impulse, the need of “life” to persist.  I did not deny what was happening to me; I calmly went about the “last rites” of preparing my will and medical power of attorney documents, contacting family and friends and spending time together where possible, paring down to what absolutely mattered for survival.

That last week, what mattered most was the other people, the wonderful loved ones that kept coming over, vigil-like, to share their time and witness my living, witness my life burning up every resource in my body to remain here.  That last week, I’d run out of energy.  The will to persist was there but the flesh was finally faltering.  When that strength left, there was always someone else’s to take up the slack, someone else’s presence to remind me of why it was so important to continue breathing, to deny Death’s right to take me.

It was only after surgery, when my body was free to finally start healing and bringing life fully back into me, that I was able to directly face the cold fact that I had almost died, that I now had an insider’s perspective on what dying felt like.  Death walks at our shoulders from the moment we draw breath, and part of the vibrancy of life comes from how easy it is to forget that fact, to live as if we’ll live forever.  I read a lot of denigration of that illusion/delusion, and I can certainly see where it gets our species in trouble to follow it.  But I can tell you that it’s part of why we are still here.  Because we are sometimes able to face death’s certainty and not just laugh in its face, but deny its power over us when it matters.

Of course, the other side of the spent coin for those of us who have refused Death’s surcease directly is that we never again get to share the illusion of Death’s absence with our fellow humans.  But that’s complicated enough that it should probably have its own post, another day.  Fearless Reader thoughts or shared experiences?  Please comment here!

One response so far