Archive for the 'best family/friends ever' Category

Nov 25 2010

Living Thanks

It would be impossible to individually list my blessings for 2010 — which was by far the hardest and most challenging of my extant years, as well as one of the most rewarding. So instead, I’ll attach a couple of relevant tags and give the main thanks that includes all the rest of the 2010 good things and people under its mantle:

I am thankful to be alive.

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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 14 2010

Cancer Chronicles: Realistic Recovery Rates

One of the things I did after surviving surgery was research recovery rates for breast cancer surgery and the common convalescence recommendations. (I didn’t do much of that beforehand; there wasn’t any energy to spare and it wouldn’t have been relevant had I not survived.) I most vividly recall my reactions to this as getting angry at what I found, on a few different levels; it got bad enough that my therapist suggested that I really didn’t have to go look at those sites if they were that infuriating. (I did indeed take a couple of months’ break on that research front; by the time I came back to it I was in a much calmer place emotionally.)

I thought it might be interesting to show with representative examples part of why I’d been getting so irked. So as follows, I present summaries of the two common categories of post-surgery recommendations found in research, followed by an overview of my actual recovery process. Please note that not everyone recovering from breast surgery will have my experience: I was in a much more extreme place physically than most people are when they go into surgery, and thus my body had more to repair and heal from. On the other hand, I have tried to keep that fact in mind in writing this, and have generalized wherever possible to wider relevance.

The doctors-funded-by-insurance recovery advice
This is of course my own category label; no site I found was so crass as to actually admit the influence of insurance motivations in their recommendations. However, points like

  • You’ll need painkillers for the first few days
  • “Most people” are ready to return to work in 2-3 weeks
  • You’ll have limited range of motion for the first 4-6 weeks
  • There are several support groups for emotional distress
  • Get a note from your doctor if you have movement restrictions

all seem to me to be heavily influenced by unseen insurance timetables of what is “optimal” — not for healing but for their profit margin. It was evident in my first week of healing that these suggestions were way off target for anyone but perhaps those receiving a small lumpectomy. (Since I researched mastectomy, not lumpectomy, this seemed more suspicious advice yet.)

Less infuriating on the medical front, but still maddening, was the other main category of advice:

The more-medically-realistic-but-emotionally-damaging recovery advice
There were several sites (a few written by medical folk but more written by survivors) that had a more physically realistic estimation of recovery rates, mentioning points such as

  • 4-6 weeks before full job duties can resume
  • pain will be consistent for the first several days, slowly tapering off
  • You’ll have limited range of motion for the first 4-6 months
  • Nerve regeneration will be happening throughout the next 6-18 months
  • Restrictions on lifting weight and such might be permanent due to lymphedema risks

and as far as all that goes in accuracy, I have much less to complain about. These sites however, for all they were closer to the mark on the physical estimations, had a screamingly heavy dose of this next part (at least one site used the literal phrasing I use here, though most weren’t quite so rude in phrasing the message):

  • You will need to join a support group to cope with your new deformed shape.

(insert gibbering rage here)
In this breast-obsessed culture, it is hard enough not to integrate messages of physical ugliness after an experience like mastectomy. Even if you are fortunate enough to escape the comments from family and friends and spouses like “I’m sure people still find you attractive (sympathy-dripping tone)” or “So, when are you getting the reconstruction?”, you’re still hit with the objectifying breast cancer campaigns like “save the ta-tas” that imply to your hindbrain that your breasts — and not, oh say, your life — are the focus of disease-fighting efforts.

Now before people get tetchy, I’ll re-emphasize that I’m not inherently against fundraising drives for breast cancer, or breast reconstruction for those who feel they need it. What I abhor is the implication that reconstruction (or a prosthesis) is a required step in the recovery process. This is not discouraged by the medical establishment, by the way. I had at least three professionals tell me that the breastform was necessary for “body balance”, with one going so far as to tell me that the breastform would help massage the lymph fluid away from the area. While this may be true for some, those of you who have seen me or seen recent pictures know that they left me plenty enough for balance and weight distribution, thanks to the ample tracts of land I sported before. I got the strong sense during research that the consistent messages towards reconstruction and prosthetics were for the benefit of those who had to look at me, and not necessarily for my own benefit.

But back to my supposed emotional distress over my new deformed shape. Not everyone has the privilege of therapy to assist them through the recovery process, though I highly recommend it for anyone who can afford it or has the insurance for it. You as a cancer survivor will be dealing with life-impacting things, some of which even those closest to you during the battle will not have to deal with as directly, or for as long a duration. I think support groups can provide a therapeutic influence, especially for those who can’t afford more formal psychotherapy. However, enough personal therapy as well as observation and much related reading over many years — not to mention uncommon sense — tells me right up front that the “don’t think of a pink elephant” meme is in strong play here. For those few patients who somehow manage to escape crappy post-surgery messages from their social circle or their larger community, these “help” sites ensure that if you hadn’t been thinking of yourself as mutilated, deformed, and socially unacceptable before, you’re surely thinking of it after reading ten sites that spend more than half of their bandwidth soothing your new pariah nerves.

I found exactly. one. site. in my searches where someone (a survivor) talked about their intent post-surgery to not go the prosthetic or reconstructive surgery route. They also blogged about changing their mind after repeated questions and pressure about reconstruction from friends and family and doctors and society. No other site I found presents longer-term recovery and maintenance options on anything other than wearing a breastform or reconstructive surgery.

It is quite emotionally impactual to go through this experience. I am blessed with a plethora of amazing family and friends and social circles who are wonderfully accepting of my new shape. This helps immeasurably in combating the messages received from the rest of the wider world that I am now supposed to become one of the social invisibles, calling as little attention to myself as possible and never expecting anyone to find me attractive again (unless I follow the reconstruction script, of course). And still fighting those perceptual demons internally takes time, and my journeying through some unpleasant emotional places. Making my job harder by priming my mind with messages of non-acceptance, emotional shame, and presumed ostracism really doesn’t help that recovery rate.

I shall now attempt a summary of what I consider a much more believable rate of recovery for mastectomy (based on my own experiences, of course).

* Even if your job is mostly sitting around on your butt all day, you are highly unlikely to be any sort of usefully functional at work before the first 3-4 weeks are up. I didn’t start writing again until about a month after surgery and it was very on-and-off for several weeks after that. Almost-dying requires an insane amount of rest and sleep afterward for full recovery. I suspect even major chest surgery without the nearly-dying part will still take longer than 2 weeks of recovery time. And if you have a labor-intensive job…see if there’s any possible way you can be on reduced body-impact duties for the first couple of months back at work. You can do your chances of long-term full healing serious damage by doing too much too soon after surgery like this.

* My cancer was hugely painful, so I was on high painkiller dosages both before and for 3 months after surgery, though I began tapering my doses down as much as I could almost immediately. For the last several months, I’ve been at lower and lower doses until the last 2-3 months, where my pain has been small enough most days to take none at all or an occasional quarter-dose as needed. It is highly likely, thanks to insurance companies and the medical industry’s stupid attitudes about pain medication, that you will not receive the level of cooperation needed from your doctors in providing you adequate dosage for long enough to be optimal for your body’s recovery. (Constant physical pain slows down your body’s ability to heal.) I might expand this point further in a later post, as there is definitely more I could talk about here.

* On the limited range of motion front — This will last far longer than you would like, especially if you have anywhere near the body awareness levels I’ve developed throughout this and other experiences. I think most of the recovery tables are based on the abilities of an “Average American”, who as we all know is fairly sedentary and has not the healthiest of lifestyles. Sure, you’ll get back to some measure of stumbling-through-life mobility within the first 3-6 weeks, but not what your body is actually capable of in potential. If you’re going to get that part back at all, you have to work hard at it. This is not an area to slack the way you might have in your pre-cancer life. Eat healthier; do the stretching and physical therapy exercises they prescribe you even when you’d really rather not; push your body — gently — to its daily limits in moving and give it rest, rest, rest in-between. Strength and range-of-motion should be mostly back after about 4-6 months, if you’re working at it, but stamina takes far longer to rebuild.

* The nerve regeneration taking much longer I have so far found to be completely true. I still have areas of incomplete innervation. In yoga I’ll still have acute stabs of localized chest and ribcage pain as the movement pulls on internal scar tissue. I still have weird nerve reconnection sensations; for example, a small pimple on my ur-boob is not only close enough to a newly-awakened nerve to be far more painful than usual, but I can feel it as if it’s in two different places on that side of my chest, about an inch apart from each other. There’s a place I can press on the front of my chest near my left armpit that I can feel as deep pressure both there and in a mirror spot on my back, next to my shoulderblade. Regular massage of the affected areas will help your nerves wake back up, and don’t forget to research foods you can eat that will encourage nerve regeneration.

* Lymphedema risk doesn’t really ever go away, as it can show up months or years after the initial surgery. On the other hand, it affects only about 10%-20% (depending on which source you consult) of chest surgery folk, so you have to weigh your risks against your daily body needs. Many recommend a lifetime restriction of lifting no more than 30 pounds and avoiding prolonged compression to the arms and chest. If you were previously an active person (and I was, and still am, really), making this adjustment can be quite difficult indeed.

* You aren’t deformed, or less of a woman. You are a bad-ass survivor. This can also be expanded in a future post if people are interested in more.

Questions and comments are welcome and encouraged!

8 responses so far

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!

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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.

3 responses so far

Sep 08 2010

Cancer Chronicles: A Tale of Perfect Breasts Gone Rogue

I had very nice breasts.

I was an early bloomer, wearing a bra by 5th grade, a B cup by junior high.  I never got any of the middle-school teasing about being flat (nor did I get any flirting, as I suspect the middle-school boys were just as confused by as attracted to my tits). I was a C cup in high school, D in college, and an almost-double-D after college.  They were nicely shaped, regularly received compliments and looks, and felt lovely to the touch.  No worries, I have plenty of pictures for posterity.

My breasts were also preparing to kill me.

One can imagine that I have an interesting perspective now, on the whole boob experience.  Some days I want to write a manifesto, along the lines of “ladies, you are not your breasts”, but most approaches I think of are tired and tried or preaching only to the choir.  Had my breasts grown any larger naturally, I would have likely gotten a reduction, as the back pain was beginning to be unpleasant, and I’m sure there would have been interesting psychological ramifications from that choice.

My involuntary reduction, as it were, has some surprising benefits.  Moving on that side is so much easier!  Physical activities are much less cumbersome, and though I’m sure some of it is due to the contrast of the pre-and post-surgery states, some of it is just plain due to the fact that smaller breasts are AWESOME.  I actually don’t mind that I’ll have to have the other one off, as I think it’d be much easier to have a more active lifestyle without large fatty chest intrusions.

Thankfully, I have yet to have anyone bothering me about getting reconstructive surgery, but I’ll have some fun if anyone does.  As far as I can tell, given the side effects from reconstructive surgery — including loss of sensation and difficulty in subsequent chest scans for oh, CANCER, say — the main reason to have it is because of what OTHER people think.  (Unless one personally has an extreme body dysmorphic need to look “intact”, for example, and that’s much more rare than a socially-induced body perception that unless one has it done, one will never be attractive to others again.)

But what about the nipples?  I could get some reconstructed or tattooed on.  Again, my answer would be, why?  I don’t feel like my body is suffering due to lack of nipple. A constructed nipple won’t give me the sensation of the original.  A tattoo would look pretty artificial given the scarring.  And I think the scar looks cool, as does the remaining little ur-breast.  Now sure, I’m cosmetically vain enough to pursue asking the original surgical oncologist if he’ll be able to do the preventative surgery to remove the other one, as I think he’s more likely to be able to match the other’s scar and shape or come close to it than a random surgeon would.  But I won’t weep too hard if I can’t have that option.

I think the regular massages, swimming, and yoga have helped my body during recovery to assimilate its new shape as part of the body, just as the acceptance of my new form by loved ones and friends has helped the emotional integration.  I’m quite irritated with most of the literature out there for post-mastectomy people, as it seems to perpetuate an attitude of “something wrong with the body”, none I could find that promoted a post-surgery genuinely body-positive attitude.  What are some good ways you, Fearless Readers, think I could do to help address that lack?  Obviously continuing to write these posts and others like them is one thing; are there others?

4 responses so far

Aug 31 2010

Cancer Chronicles — answers re: sexuality

One of the questions I was asked after putting up the recent “questions” post was:  “Since breasts are essentially secondary sex organs, do you find that your sexuality has changed since the surgery?”

I had an immediate response to this one, and another response after giving it some thought, I’ll share both here.

The immediate response was no, I don’t think my sexuality changed much due to the surgery and loss of breast.  I think current stress in the family causing at least my husband to have a temporary libido decrease has affected my daily sexuality more than the surgery has.  (Though we’re certainly doing what we can as energy levels permit, enjoyably!) I’ve certainly found that the cliché of an increased libido from the “new lease on life” effect of narrowly missing death has been reasonably true in my case; I’m interested in sex most days, though sometimes the physical energy doesn’t cooperate with the desire.  I also find it easy to take care of those needs myself when a partner isn’t available, but that’s not much different from pre-cancer attitudes.

One thing that I think has drastically helped my new body-shape perception internally has been the across-the-board acceptance of how I look from family and friends.  I’m told I look great, the scar is “neat” or “pretty”, and all of this matches how I feel.  Certainly early on after surgery there were some body image issues coming up periodically for me, but they were much easier not to internalize as truth due to the awesome support I received.

Another thing that sounds opposite to the above but has still contributed to a very comfortable body image is my assumption that for MOST random strangers I will meet or encounter, I will be Other and not a sexually attractive being.  Not only do we monkeys have a biological tendency to prefer symmetry of form, but our culture in America has an unhealthy obsession with mammary tissue.  So I do tend to assume that most people will not be checking me out in a crowd.  This perversely has freed me up to think about it even less than I did before — which wasn’t much — and dress how I please, look how I please, and walk as if I’m a gorgeous goddess even more easily than pre-cancer.  I also tend to assume that anyone worth paying attention to will be able to see the attractiveness in front of them and not get fixated on blemish-free symmetry.

After some thought, I think a couple of things have changed.  In general, I don’t really perceive breasts as sexual organs, though I’ll still notice with aesthetic appreciation someone with a particularly well-sculpted set.  On the other hand, my husband is helping me explore sexualizing the ur-boob, touching it during shared intimacy as well as more casually in cuddling.  I find this has done much good in assisting my subconscious to accept my new form.

These days I have a much more ambiguous relationship with the remaining breast than the mostly-missing one.  How do you continue to love and accept a body part that you’re planning to remove before it tries to kill you?  You can’t reject it outright while it’s still a part of you, or you’ll get alignment weirdnesses and messed up patterns of muscle tension and possible other health issues.  However, you also can’t fully trust it, especially with the genetic component of cancer mutation present.  Conditional acceptance of a body part is a strange thing to attempt healthily, for someone used to more comfort with my own body than that.  It varies from day to day how well I do on that front.

I feel healthier than I have in years, which I’m told is fairly normal after a life-threatening health crisis — not the least of which is now I have more visceral motivation than most to get and stay healthier.  That has certainly contributed to more emotional equilibrium as well as easier bounce-back from heightened emotional states.  It also makes it practically much easier to make myself exercise and stay active even when I’m-tired-and-don’-wanna.

I have to assume all of these factors are contributing to my current healthy and vibrant libido as well as my available physical energy for daily activities which is still improving weekly.  I’m well aware my experiences in this area are nothing like most people with breast cancer.  It’s obvious from the available e-literature on the subject that most people are expected to be sexless and hate themselves post-mastectomy, or only feel better if they get reconstructive surgery.  I don’t expect everyone to follow my lead, but I am here to tell you that those expectations aren’t inevitable.

More questions or thoughts? That was fun to think about!

5 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

Jul 07 2010

routine interruptions

Not much writing at all the past three weeks as we adjust to a new family member (which is going splendidly by the way, about as well as could possibly be expected given circumstances), but have either 3 or 4 short stories burbling in the backbrain waiting for keyboard time.  Have caught up on some research reading, at least.  Quite enjoying being a full-time mom, I’m as good at it as you might have guessed, for those who know me.  The next few weeks’ project is to figure out how to more successfully integrate full-time mom-ness with full-time writerlyness.  Since they both use a large amount of daily energy, I’d love to hear from those of you who have successfully juggled this if you have nuggets of wisdom to pass along.  I’m trying to integrate all this as non-neurotically as possible, so I still have to sleep, eat, participate in various relationships, and otherwise take care of me as needed.

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Jun 26 2010

Console gaming: the next step

Thanks so much to everyone who commented!  We also asked around at Nathan’s work and of people we encountered, and we made a little pro/con fact list for each of the XBox 360, Wii, and PS3.  Family consensus seemed to agree that the XBox 360 was the most desirable all around.  Next up: which games do you like, those of you who play the XBox?

We’re supposed to steer clear of ultra-violent games, at least at first. The Kid also has, for now, a disturbing level of the “lowest-common-denominator American” social programming from his previous environment, which means among other things that he gets abnormally frustrated at not doing well right away at attempted activities, especially competitive games.  So if there are games that start out easy and get progressively more challenging, or aren’t especially score/competition-based, those might be good ones to start with for us.  Regardless, what would you recommend as fun for adults; 12-year-olds; and group family games?

Someone recommended Fable as a good family RPG-style game, any other thoughts on this or other similar games?  The Kid listened to us describe RPGs (both the table-top and computer versions) and decided (unsurprisingly) that he’s interested in trying a computerized or console version.  We’re definitely open to other types of games than RPGs, of course.

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