"CancerCon Part 4: What Is the One Thing That Surprise[d] You the Most During Cancer?"
You mean, besides the Cancer?
It's a HuffPo article, very well written (despite the typo in the title), and it includes a broad range of answers. Those interviewed span the spectrum, from suffocating hopelessness to revitalizing rebirth. I am somewhere in between the two.
What hit me from the article, though, was a comments reply. "Finishing treatment is not the end of cancer... merely the end of when people care about your cancer." Wow... she nailed it. So true. Everyone thinks it's over and all is well once treatment is over. In reality, 'after-cancer' is often worse than the cancer. I wasn't prepared for 'after-cancer.' Nope."
Even *I* thought - for the entire three months of chemotherapy and the following nine months of intravenous protein treatment - that "after cancer" meant "after treatment." It doesn't. Not for me. Not at all. Nope.
My last treatment was in November of 2015. Here's a run-down of a typical week 7 months later.
On an average of 1 to 2 days a week, I wake up with an extremely light-sensitive migraine. If it's a weekend, I am in luck. Monday through Thursday, though, I have to weigh canceling class for 60+ students versus figuring out what I can present in class and still make it make sense. All while ice picks are stabbing at my brain.
On an average of 1 to 2 days a week, I have a frontal lobe headache by the end of the day. Yay. I made it through class, only to not be able to grade, answer emails, or write assignments, usually putting me behind for the next day.
Even time my head hurts, I am reminded that my kind of cancer most often shows back up in the lungs.
And the brain.
On an average of 3 to 5 times a day, I have to find a way to adjust the temperature around or the clothes I am wearing so the prickly heat that makes it feel like someone is pouring acid all over me stops. And so that I feel like I can breathe.
This phenomenon will, from this point on, be referred to as The Amazing Acid Wash.
On an average of 5 to... oh, hell. Averages don't work with this one. Because my cancer feeds on hormones, treatment put me into chemical menopause that we are now doing everything possible to maintain. Unnatural, induced menopause has left me unable to control my physiological responses to stress, frustration, embarrassment, and anger. This meaning crying in public is a weekly - and often daily - issue.
On a daily basis, I am reminded of the cognitive damage of chemotherapy. The blank looks on the faces of friends, family, and students are now the signal that I am no longer verbally communicating effectively.
...Or maybe I'm speaking another language.
In trying to walk at least 30 minutes a day 3 or 4 days a week, I've had to map routes in my head so that when The Amazing Acid Wash hits (and it will hit), I have a quick route indoors so I can make it home/back to my office.
(This isn't so much of an issue anymore. It's now in the 90s everyday, so The Amazing Acid Wash hits before I get from my back door to the car. Oh, to still qualify for a handicapped parking pass.)
What a thing to long for. A handicapped parking pass for a perfectly healthy looking person.
Any day that I stand on my feet for more than about an hour or two, I must be prepared for the next 12 to 24 waking hours to feel like I am moving through jello.
I now understand more fully the definition of "fatigue."
If the shower/bath water temperature more than a few degrees lower or higher than body temperature, I can't stay in the water because the pectoral muscles holding up the silicone sack of my reconstruction begin waves of contractions resembling the birth scene in "Aliens."
And skipping the emotional, relationship, friendship, parenting, spiritual, and financial impacts, every time I'm asked if I would like to join a committee/volunteer/go to lunch-coffee-dinner/go to a party/hang out at the bar, or anything else that isn't happening "today," I have to equivocate. I've committed to things and people I love and miss so many times, only to have some mix of the above force me to back out, embarrassed, with apologies and explanations on the outside and a humiliated broken heart on the inside that I've stopped saying yes. How long, then, is it, until people just stop asking.
What it boils down to is two options. Either I go out and face the world, knowing that the appearance of any of the above recurring recovery facets will elicit some mix of pity, sadness, frustration, cluelessness, disbelief, and/or fear on the faces of those with which I will interact - or I shut myself in and face only myself.
I wonder which option my family would choose.
Both options make me want to start screaming and never stop.
Showing posts with label TMI. Show all posts
Showing posts with label TMI. Show all posts
Monday, June 6, 2016
Thursday, February 25, 2016
TMI Alert: One Day in Life After C
I suppose it might depend on your definition of TMI, but whatever...
I am starting to understand more of what people mean when they say, "there will come a point where you *know* you are recovering. There will eventually be more days when you feel more like the 'old you' instead of the trainwreck of the 'new you' that seemed like it would never end."
Ok, so no one painted THAT bad of a picture. And I'm starting to understand why that it, too, but that's not my point today.
What is my point today?
My point is I started off today on a high note - a really high note. I interviewed with The Fig Tree - an interfaith newsletter - to become a volunteer staff member that would help edit, keep the office open, organized community education events, stuff like that. And the interview, it was inspiring. It gave me ideas. It made me feel like I could make a difference.
And I spoke with the Washington Community College Humanities Association today about taking a seat on their board to help further education on the Humanities across the state.
I've gotten a ton of work done, finished some form-filling-out, posted some grades, bonded with my son, and updated my GoFundMe.
And that's the stickler today, I think. A few weeks ago, I started a GoFundMe for myself and my family. This journey through breast cancer has left us on the ledge of financial ruin. After exhausting all other resources I was capable of exhausting, GoFundMe was kind of what was left. It hasn't been very successful yet, but in defense of my circles, most people I know are just as "bad off," if not worse off than my family and I. It's been commented on and shared like crazy and that is just wonderful. It makes me feel so loved.
So what is my point today?
No matter what I do, no matter what I accomplish, no matter how many volunteer positions I agree to fill, it doesn't maintenance the cars, get medical attention for my kitties, get phones and computers that actually work, or pay my bankruptcy lawyer. It keeps me busy. It keeps me from thinking about it all. But it doesn't *fix* anything for us. I can't take another job. I can't guarantee I would have the energy to commit to an entry position. Besides, it's not like I don't make enough money to live on, I just don't make enough money to catch up, pay for immediate needs, AND keep up with monthly bills.
On the downswing of days like today, that's the reality that's waiting for me, and it's hard. It's exhausting.
Most of all, it's humiliating.
I must say, GoFundMe, among many positives, at least offers the opportunity to beg without having to do it face to face or stand on a corner with a sign ~ the 1st, I have done many times ~ the 2nd, I've considered, but haven't resort to, I mean, I don't even know the rules for claiming a corner. I also don't seem to have Kanye's knack for getting people to donate just to shut me up and make me go away, unfortunately.
So boiled down to the most simple point today?
Gratitude.
Thank you, GoFundMe, for helping me and so many others save a little face.
I am starting to understand more of what people mean when they say, "there will come a point where you *know* you are recovering. There will eventually be more days when you feel more like the 'old you' instead of the trainwreck of the 'new you' that seemed like it would never end."
Ok, so no one painted THAT bad of a picture. And I'm starting to understand why that it, too, but that's not my point today.
What is my point today?
My point is I started off today on a high note - a really high note. I interviewed with The Fig Tree - an interfaith newsletter - to become a volunteer staff member that would help edit, keep the office open, organized community education events, stuff like that. And the interview, it was inspiring. It gave me ideas. It made me feel like I could make a difference.
And I spoke with the Washington Community College Humanities Association today about taking a seat on their board to help further education on the Humanities across the state.
I've gotten a ton of work done, finished some form-filling-out, posted some grades, bonded with my son, and updated my GoFundMe.
And that's the stickler today, I think. A few weeks ago, I started a GoFundMe for myself and my family. This journey through breast cancer has left us on the ledge of financial ruin. After exhausting all other resources I was capable of exhausting, GoFundMe was kind of what was left. It hasn't been very successful yet, but in defense of my circles, most people I know are just as "bad off," if not worse off than my family and I. It's been commented on and shared like crazy and that is just wonderful. It makes me feel so loved.
So what is my point today?
No matter what I do, no matter what I accomplish, no matter how many volunteer positions I agree to fill, it doesn't maintenance the cars, get medical attention for my kitties, get phones and computers that actually work, or pay my bankruptcy lawyer. It keeps me busy. It keeps me from thinking about it all. But it doesn't *fix* anything for us. I can't take another job. I can't guarantee I would have the energy to commit to an entry position. Besides, it's not like I don't make enough money to live on, I just don't make enough money to catch up, pay for immediate needs, AND keep up with monthly bills.
On the downswing of days like today, that's the reality that's waiting for me, and it's hard. It's exhausting.
Most of all, it's humiliating.
I must say, GoFundMe, among many positives, at least offers the opportunity to beg without having to do it face to face or stand on a corner with a sign ~ the 1st, I have done many times ~ the 2nd, I've considered, but haven't resort to, I mean, I don't even know the rules for claiming a corner. I also don't seem to have Kanye's knack for getting people to donate just to shut me up and make me go away, unfortunately.
So boiled down to the most simple point today?
Gratitude.
Thank you, GoFundMe, for helping me and so many others save a little face.
Sunday, October 4, 2015
?TMI? Again, You Can't Say You Weren't Warned...
THIS is a crazy side-rant in the middle of what, I am quickly becoming convinced, is a minor nervous breakdown. But it is a really positive crazy side-rant, and I *really* need the positive right now, so don't say you weren't warned about the upcoming crazy-laced TMI rant.
Women under the age of menopause (and any many in or hoping to be in a long-term relation with a woman) might secretly fear "the Change" more than any other biophysical event outside of dying. Let me demonstrate my point. Set a timer for 45 seconds, then close your eyes and think about the ways menopause has or is impacting your life. What might the future hold for you when you finally stare the Change in the eyes for the first time.
How could it not send icy cold shivers down the spine? Considering Hollywood's portrayal of older women, (women of any age, really) pharmaceutical advertising's constant reminders about the heat, moods, and moisture (or lack thereof) associated with the Change, and the ever-present stoic, matronly mother/aunt/grandmother/friend's mother/church pew neighbor/sweet little lady next door archetype, what else are we supposed to think? I've always imagined a grim Transformation (I'll stop speaking for the majority of women now) resulting in a shell of a woman, a ghostly shadow of her former self. Every joke, ad, and movie reinforces the idea that menopause is PMS-on-steroids.
I see things a bit differently now.
I would like to point out a few things 1) in no conceivable way did my 3-month, chemically-induced, stress-drenched menopause experience resemble what I understand to be the "average," "natural" menopause reality, information admittedly gleaned mainly through furtive, short conversations and late night Google obsessions. 2) In no universe do I think it's possible that my "Change" is complete. 3) In no realm of the imagination would I EVER be so vain ~ or disrespectful ~ as to superimpose my experience onto others. What I write next is my experience, thus far, and I must assume that it is mine, alone.
But I dearly, truly hope not. :-)
I look back now at the barely-contained angst that consumed me during the months after my diagnosis, but before... well, today, and my first instinct is to stoically smile, just like I've seen a million other white-haired matron smile. For months that seemed like *centuries,* I could not, in my relative innocence, imagine me without my "Drive." And that's the big deal about menopause, right? You lose your "Drive," and then you go crazy. "Drive" has played a heavy hand in my Universe for almost 40 years. The thought of it simply disappearing (because that's what happens, right?) was so inconceivable, so... unspeakable that I spent many nights/early mornings alone on the couch, trying desperately to not-disturb my 16 year old son or my boyfriend ~ of *7 very short months* ~ as I immersed myself in imagining who that woman would be. There is *nothing* to prescribe, no exercise to overdo, no proven remedy for the loss of... desire. How... boring that must be, I thought. So empty. Dead. And anyone who knows me intimately understands that boredom is my kryptonite. I was scared to death. How in the HELL was my already-stressed-to-the-max-7-month-old relationship going to handle THAT?!?!?!? It was already juggling work, children, grandchildren, family, bills, daily life, blah, blah, blah. Oh, yeah. And breast cancer. Put menopause in the mix? You could say I was scared. To death.
Fast-forward several months later to now... I am emerging into the next phase of this. I am coming to understand that Drive and Desire are two often-very separate things. The absence of "Drive" is not a vacuum. To be left empty, the core quality of the human spirit would have to be "Drive." Somehow, in my pre-menopausal way of assuming the worst (something I have NEVER done before), I had decided that "desire" equated the "Drive," that they were one and the same. It is a Need, a Necessity, ultimately, a biological imperative. It is Sex Drive that has allowed the human race to procreate and survive. Drive is produced largely by estrogen and in the hormone's absence, Drive all but disappears. This would be a terrible tragedy if Drive and Desire were the same thing. I am coming to see they definitely are not.
Desire involves interest. It involves enticement. Desire equates *want,* instead of need. Yes. The stripping of estrogen from my body would leave me bereft of Need. But Desire, I can now see, has nothing to do with estrogen. In fact, it's had an almost inverse affect on me. The death of Drive has left all kinds of room to filled in with Desire. (That is about the cheesiest-ass thing I have *ever* written.) Being able to let go of "have to" and embrace "want to" has been amazing. Enlightening, really. I look back at my menopausophobia, and I can't help but laugh at my irrational fears. Interestingly, I think I'm glad I was given a healthy fear the Change. In some ways, the looming threat of <<<menopause>>> kept me on my toes. It never let me forget for too long that nothing is permanent. The zombie-esque future I face as an aging woman often inspired(s) me to acts of great fun and foolishness. Desire, unfettered by "Drive," is trans-formative. When sex sheds the weight of "must have," "want to have" all but takes over.
Remember that 45 seconds of imagining menopause? Close your eyes, again, but this time imagine what wanting feels like without the pressure of "must." Wanting the one you love, not because a gland in your brain is flipping internal switches your body can't ignore, but simply because... you want them. You don't have to have them. <close your eyes!>
You *WANT* them.
;~*
And that, my friends, is *hot.*
So when half-joking, side-stepping inquiries about the HELL of menopause come my way, I think a calm, reserved smile is probably the way to go, don't you?
Women under the age of menopause (and any many in or hoping to be in a long-term relation with a woman) might secretly fear "the Change" more than any other biophysical event outside of dying. Let me demonstrate my point. Set a timer for 45 seconds, then close your eyes and think about the ways menopause has or is impacting your life. What might the future hold for you when you finally stare the Change in the eyes for the first time.
How could it not send icy cold shivers down the spine? Considering Hollywood's portrayal of older women, (women of any age, really) pharmaceutical advertising's constant reminders about the heat, moods, and moisture (or lack thereof) associated with the Change, and the ever-present stoic, matronly mother/aunt/grandmother/friend's mother/church pew neighbor/sweet little lady next door archetype, what else are we supposed to think? I've always imagined a grim Transformation (I'll stop speaking for the majority of women now) resulting in a shell of a woman, a ghostly shadow of her former self. Every joke, ad, and movie reinforces the idea that menopause is PMS-on-steroids.
I see things a bit differently now.
I would like to point out a few things 1) in no conceivable way did my 3-month, chemically-induced, stress-drenched menopause experience resemble what I understand to be the "average," "natural" menopause reality, information admittedly gleaned mainly through furtive, short conversations and late night Google obsessions. 2) In no universe do I think it's possible that my "Change" is complete. 3) In no realm of the imagination would I EVER be so vain ~ or disrespectful ~ as to superimpose my experience onto others. What I write next is my experience, thus far, and I must assume that it is mine, alone.
But I dearly, truly hope not. :-)
I look back now at the barely-contained angst that consumed me during the months after my diagnosis, but before... well, today, and my first instinct is to stoically smile, just like I've seen a million other white-haired matron smile. For months that seemed like *centuries,* I could not, in my relative innocence, imagine me without my "Drive." And that's the big deal about menopause, right? You lose your "Drive," and then you go crazy. "Drive" has played a heavy hand in my Universe for almost 40 years. The thought of it simply disappearing (because that's what happens, right?) was so inconceivable, so... unspeakable that I spent many nights/early mornings alone on the couch, trying desperately to not-disturb my 16 year old son or my boyfriend ~ of *7 very short months* ~ as I immersed myself in imagining who that woman would be. There is *nothing* to prescribe, no exercise to overdo, no proven remedy for the loss of... desire. How... boring that must be, I thought. So empty. Dead. And anyone who knows me intimately understands that boredom is my kryptonite. I was scared to death. How in the HELL was my already-stressed-to-the-max-7-month-old relationship going to handle THAT?!?!?!? It was already juggling work, children, grandchildren, family, bills, daily life, blah, blah, blah. Oh, yeah. And breast cancer. Put menopause in the mix? You could say I was scared. To death.
Fast-forward several months later to now... I am emerging into the next phase of this. I am coming to understand that Drive and Desire are two often-very separate things. The absence of "Drive" is not a vacuum. To be left empty, the core quality of the human spirit would have to be "Drive." Somehow, in my pre-menopausal way of assuming the worst (something I have NEVER done before), I had decided that "desire" equated the "Drive," that they were one and the same. It is a Need, a Necessity, ultimately, a biological imperative. It is Sex Drive that has allowed the human race to procreate and survive. Drive is produced largely by estrogen and in the hormone's absence, Drive all but disappears. This would be a terrible tragedy if Drive and Desire were the same thing. I am coming to see they definitely are not.
Desire involves interest. It involves enticement. Desire equates *want,* instead of need. Yes. The stripping of estrogen from my body would leave me bereft of Need. But Desire, I can now see, has nothing to do with estrogen. In fact, it's had an almost inverse affect on me. The death of Drive has left all kinds of room to filled in with Desire. (That is about the cheesiest-ass thing I have *ever* written.) Being able to let go of "have to" and embrace "want to" has been amazing. Enlightening, really. I look back at my menopausophobia, and I can't help but laugh at my irrational fears. Interestingly, I think I'm glad I was given a healthy fear the Change. In some ways, the looming threat of <<<menopause>>> kept me on my toes. It never let me forget for too long that nothing is permanent. The zombie-esque future I face as an aging woman often inspired(s) me to acts of great fun and foolishness. Desire, unfettered by "Drive," is trans-formative. When sex sheds the weight of "must have," "want to have" all but takes over.
Remember that 45 seconds of imagining menopause? Close your eyes, again, but this time imagine what wanting feels like without the pressure of "must." Wanting the one you love, not because a gland in your brain is flipping internal switches your body can't ignore, but simply because... you want them. You don't have to have them. <close your eyes!>
You *WANT* them.
;~*
And that, my friends, is *hot.*
So when half-joking, side-stepping inquiries about the HELL of menopause come my way, I think a calm, reserved smile is probably the way to go, don't you?
Sunday, April 5, 2015
Look Right Through Me
Menopause - /ˈmenəˌpôz/ - noun
the ceasing of menstruation; the period in a woman's life (typically between 45 and 50 years of age) when this occurs.
Okay. Well, that definition is pathetically simplistic. Let's try a medical dictionary.
Definition: Menopause represents the end of menstruation. While technically it refers to the final period, it is not an abrupt event, but a gradual process. Menopause is not a disease that needs to be cured; it is a natural life-stage transition during which women often make decisions about "treatment" options, such as hormone replacement therapies.
Now we're getting somewhere. That one reads more like the opening of a conversation. Unfortunately, it's a conversation, it seems, no one is having, not with any kind of full-disclosure honesty or in-depth exploration. Or maybe it's too complex and unique for a true conversation; I just don't know.
What I do know is that 3 months ago, one of my favorite nurses at CCNW looked at me and said, "Well, you are fully post-menopausal, so we don't need to do anything there." Uuuuhhhhhh, WHAT? Before chemo started, I wasn't even PRE-menopausal, and now, less than 4 months later, I'm fully POST! What the F@CK!?! Couldn't SOMEONE have thought to mention to me that my hormone levels were changing so drastically that I would be through menopause in record time? Maybe there's a meditation practice I could have done to ease the symptoms. Maybe some gentle yoga. A pill with no harmful interactions? SOMETHING? I thought I was *losing* my mind. I really, seriously thought I was going crazy and that I wasn't going to come back from it. At least if I had known it was menopause, I could have focused on the.... temporary nature of the mood-swings and physical changes. I figured my care team would KNOW to say something about it, but no one thought to say anything. No one thought to mention it. I felt so invisible that day. So trivial. Glossed over and unseen.
And now I'm going through it again. Not menopause (I don't think), but the great, invisible Phantom Nipple strikes, this time. The weight of misunderstood assumption is *so heavy.* I completely understand why anyone in their right mind would look at breast reconstruction following malignant breast cancer as a positive, celebratory thing. Maybe I'm not in my right mind (ha. ha. ha.) but it doesn't feel that way. I just hurt. Badly. Not as bad as I did after the mastectomy, but almost. And definitely more widespread. This pain is temporary, though, I know that. Who, (there's that phrase again) in their *right mind* WOULDN'T celebrate their return to looking "normal?" Apparently, not me. I am on my way to the full breast augmentation I have wanted for *years,* and I am not happy about it. And I don't know why. I'm sure I will be, eventually, but right now, in this moment, no.
There's a sense I get that many might think I am now on the road to "over;" that I am officially on the road to "recovery" with this first surgery. Maybe that's what's pissing me off, because I don't feel the "over" - the "recovery" - that so many seem to see. I still have Herceptin infusions through September. I still have many minor and at least one more major surgery between now and February of next year. I have Tamoxifen pills (the ones that will KEEP me post-menopausal) for a minimum of 5 years, or 10 years, if the current studies say 10 years is better. Maybe I'm pissed off because I can't seem to see this step like others do - for me, this is one of twelve thousand steps I simply never wanted to *have* to take, one of many pills I never wanted prescribed, one of many chemicals I never wanted injected, one of many surgeries I never wanted to have. I can't seem to find the "at least" in this, yet.
And underneath it all, every time a migraine sets in, or my damaged heart starts pounding too quickly and too hard, or my vulnerable lungs show the slightest sign of ache, I will have to fight the urge to beg for more tests - just to *make sure* IT hasn't come back somewhere else. Just to make sure I don't have to start this *hell* all over again. I now know, intimately, how much this experience sucks. And I can never *not know* that again.
Ignorance is bliss. And in this, I am not blissful.
(In honor of my dearly departed cousin, Ashley Carol, age 52, who passed away on Good Friday. Your pain is relieved, your fears are allayed, and your suffering is at an end. God speed and take care of you, "Sis." You've earned it.)
What I do know is that 3 months ago, one of my favorite nurses at CCNW looked at me and said, "Well, you are fully post-menopausal, so we don't need to do anything there." Uuuuhhhhhh, WHAT? Before chemo started, I wasn't even PRE-menopausal, and now, less than 4 months later, I'm fully POST! What the F@CK!?! Couldn't SOMEONE have thought to mention to me that my hormone levels were changing so drastically that I would be through menopause in record time? Maybe there's a meditation practice I could have done to ease the symptoms. Maybe some gentle yoga. A pill with no harmful interactions? SOMETHING? I thought I was *losing* my mind. I really, seriously thought I was going crazy and that I wasn't going to come back from it. At least if I had known it was menopause, I could have focused on the.... temporary nature of the mood-swings and physical changes. I figured my care team would KNOW to say something about it, but no one thought to say anything. No one thought to mention it. I felt so invisible that day. So trivial. Glossed over and unseen.
And now I'm going through it again. Not menopause (I don't think), but the great, invisible Phantom Nipple strikes, this time. The weight of misunderstood assumption is *so heavy.* I completely understand why anyone in their right mind would look at breast reconstruction following malignant breast cancer as a positive, celebratory thing. Maybe I'm not in my right mind (ha. ha. ha.) but it doesn't feel that way. I just hurt. Badly. Not as bad as I did after the mastectomy, but almost. And definitely more widespread. This pain is temporary, though, I know that. Who, (there's that phrase again) in their *right mind* WOULDN'T celebrate their return to looking "normal?" Apparently, not me. I am on my way to the full breast augmentation I have wanted for *years,* and I am not happy about it. And I don't know why. I'm sure I will be, eventually, but right now, in this moment, no.
There's a sense I get that many might think I am now on the road to "over;" that I am officially on the road to "recovery" with this first surgery. Maybe that's what's pissing me off, because I don't feel the "over" - the "recovery" - that so many seem to see. I still have Herceptin infusions through September. I still have many minor and at least one more major surgery between now and February of next year. I have Tamoxifen pills (the ones that will KEEP me post-menopausal) for a minimum of 5 years, or 10 years, if the current studies say 10 years is better. Maybe I'm pissed off because I can't seem to see this step like others do - for me, this is one of twelve thousand steps I simply never wanted to *have* to take, one of many pills I never wanted prescribed, one of many chemicals I never wanted injected, one of many surgeries I never wanted to have. I can't seem to find the "at least" in this, yet.
And underneath it all, every time a migraine sets in, or my damaged heart starts pounding too quickly and too hard, or my vulnerable lungs show the slightest sign of ache, I will have to fight the urge to beg for more tests - just to *make sure* IT hasn't come back somewhere else. Just to make sure I don't have to start this *hell* all over again. I now know, intimately, how much this experience sucks. And I can never *not know* that again.
Ignorance is bliss. And in this, I am not blissful.
(In honor of my dearly departed cousin, Ashley Carol, age 52, who passed away on Good Friday. Your pain is relieved, your fears are allayed, and your suffering is at an end. God speed and take care of you, "Sis." You've earned it.)
Tuesday, March 24, 2015
The Power of Cleavage
I wonder how many women have debated *not* going through with breast reconstruction after scheduling the thing. How many women are torn over this decision? I know there are women - many women - who choose no reconstruction, but my interpretation is that they were NOT torn; that they knew they didn't want a reconstruction at some point *before* scheduling it. But I don't know that, for sure, I haven't looked. Maybe I should.
(Some time later...)
So, I did. I read for about an hour or so. First thing I learned; it's called "going flat" when you don't reconstruct. Another thing; most women who "go flat" are doing so after a full-on, double mastectomy. The few single (one-sided) mastectomies I found that didn't opt for reconstruction, most wear prostheses: rather heavy gel fake breasts. Some don't, but most are saying no to reconstruction because they are scared of more surgeries, their health won't allow it, or they worry about the complicated, long process that is reconstruction. And the process is lengthy. First, there is a major surgery (if you are going expanders and not trans-flap, which I am) during which we will augment the left and place a spacer under the right. The spacer gets inflated every week for 6 weeks or so. Once the reconstruction side is the "right size," you wait 3 months - THEN you get the mastectomy side rebuilt. Then there comes the "do I want a nipple constructed"-type decisions, along with a myriad of other, relatively minor procedures to tweak and perfect. All in all, at least in the path I've chosen, you are looking at a year to a year and a half of surgeries and recoveries; most small with a couple of bigger ones thrown in for good measure.
Oh yeah, and implants aren't permanent. They have to be replaced, eventually, for almost everyone. The "average lifespan" of implants - 10-15 years.
Do I want more breast surgery at 60?
Do I want more surgery now?
These are the times that try a woman's soul, lemme tell ya.
I could be all ragey and say things like, "breasts aren't beauty" and "women shouldn't be defined by their bodies" and "this is all trivial when compared to cancer and chemo" and... blah, blah, blah and not get the reconstruction.
But the truth is, I've always wanted a breast augmentation. For as long as I can remember, I've never particularly liked my chest. And now that I'm one week and two days away from the first "perk" of breast cancer (I can't count how many times I've heard some variation of "well, at least you are getting something out of this), there's this nervous nelly inside of me saying the same thing over and over and over again... "there's no turning back... there's no turning back... there's no turning back..."
And some of the scenery I expect on the next leg of this journey?
A year of procedures - and, most likely, noticeable discomfort.
The myriad of potential complications.
The celebratory well-wishes of friends and family.
There is more I could list, but there are two pieces that threaten to pick up my phone and cancel the surgery.
1. I am *so tired.* I am SO TIRED that sometimes, I just don't want to do *anything.* I don't want to get up, I don't want to eat, I don't want to watch tv, I don't want to read. "Doing" something always involves a decision. I'm tired of making decisions. The way I feel right now, I don't want to decide anything ever again. And this surgery is a big decision.
And 2. There are many people that don't care that I have only one breast and they have supported me and walked with me and loved me through this whole process. When chemo ended, though, there was something of a perception that the journey was over with my last infusion, but it wasn't. It isn't. I felt almost... guilty when explaining to people that I wasn't done, that the road I am on doesn't have an end in sight. That's really hard for people to hear, though, and even harder to explain - over and over and over again. Sometimes, though, easier is all you can really do. I just started agreeing how great it was that I was through with the hard part.
But lying is only easier in the moment. I don't like lying, and I don't do it very well. Lying leaves little stains on your soul; it punches you in the gut every time you do it. It makes me want to cry. Lying is only easier in the moment.
And I don't want to lie about more than I already do. I wonder how many people will want to celebrate my new boobs with me when that's the last thing I want to do, because again, it will look like I'm "through the hard part."
Maybe I'm scared it'll be "over" for everyone but me. Maybe I'm scared there is no such thing as recovery and moving through this. Maybe I'm scared that I'm going to be scared for the rest of my life and have to hid it behind a smile and a lie.
Maybe I would give anything to have my chest back like it was: saggy, stretch-marked from years of nursing, and a bit too small...
...if it meant never having breast cancer.
Maybe there is nothing that can make me feel "better" about all of this.
When all of this is said and done, maybe I'm scared that everyone's perception of "over" will simply leave me sitting alone in the fear that "over" doesn't exist.
I've always said that "afraid" doesn't apply to me. Nervous? Yes, but afraid? Not me. I can't say that anymore. I have now been afraid for 278 days. 278 long, nauseating, exhausting days. Reconstruction will make me look whole again, and yet, I'm afraid "whole" might no longer be in my vocabulary. I am afraid the cancer will come back. I am afraid that no matter how healed I look, I will never feel well again. None of this makes me feel healed and well and "whole."
Maybe it's as simple as wanting to look as broken and scarred on the outside as I feel on the inside. Looking at all of the ink on my body, it's easy to see that I wear my pain "on my sleeve" for everyone to see. Why should this be any different?
(Some time later...)
So, I did. I read for about an hour or so. First thing I learned; it's called "going flat" when you don't reconstruct. Another thing; most women who "go flat" are doing so after a full-on, double mastectomy. The few single (one-sided) mastectomies I found that didn't opt for reconstruction, most wear prostheses: rather heavy gel fake breasts. Some don't, but most are saying no to reconstruction because they are scared of more surgeries, their health won't allow it, or they worry about the complicated, long process that is reconstruction. And the process is lengthy. First, there is a major surgery (if you are going expanders and not trans-flap, which I am) during which we will augment the left and place a spacer under the right. The spacer gets inflated every week for 6 weeks or so. Once the reconstruction side is the "right size," you wait 3 months - THEN you get the mastectomy side rebuilt. Then there comes the "do I want a nipple constructed"-type decisions, along with a myriad of other, relatively minor procedures to tweak and perfect. All in all, at least in the path I've chosen, you are looking at a year to a year and a half of surgeries and recoveries; most small with a couple of bigger ones thrown in for good measure.
Oh yeah, and implants aren't permanent. They have to be replaced, eventually, for almost everyone. The "average lifespan" of implants - 10-15 years.
Do I want more breast surgery at 60?
Do I want more surgery now?
These are the times that try a woman's soul, lemme tell ya.
I could be all ragey and say things like, "breasts aren't beauty" and "women shouldn't be defined by their bodies" and "this is all trivial when compared to cancer and chemo" and... blah, blah, blah and not get the reconstruction.
But the truth is, I've always wanted a breast augmentation. For as long as I can remember, I've never particularly liked my chest. And now that I'm one week and two days away from the first "perk" of breast cancer (I can't count how many times I've heard some variation of "well, at least you are getting something out of this), there's this nervous nelly inside of me saying the same thing over and over and over again... "there's no turning back... there's no turning back... there's no turning back..."
And some of the scenery I expect on the next leg of this journey?
A year of procedures - and, most likely, noticeable discomfort.
The myriad of potential complications.
The celebratory well-wishes of friends and family.
There is more I could list, but there are two pieces that threaten to pick up my phone and cancel the surgery.
1. I am *so tired.* I am SO TIRED that sometimes, I just don't want to do *anything.* I don't want to get up, I don't want to eat, I don't want to watch tv, I don't want to read. "Doing" something always involves a decision. I'm tired of making decisions. The way I feel right now, I don't want to decide anything ever again. And this surgery is a big decision.
And 2. There are many people that don't care that I have only one breast and they have supported me and walked with me and loved me through this whole process. When chemo ended, though, there was something of a perception that the journey was over with my last infusion, but it wasn't. It isn't. I felt almost... guilty when explaining to people that I wasn't done, that the road I am on doesn't have an end in sight. That's really hard for people to hear, though, and even harder to explain - over and over and over again. Sometimes, though, easier is all you can really do. I just started agreeing how great it was that I was through with the hard part.
But lying is only easier in the moment. I don't like lying, and I don't do it very well. Lying leaves little stains on your soul; it punches you in the gut every time you do it. It makes me want to cry. Lying is only easier in the moment.
And I don't want to lie about more than I already do. I wonder how many people will want to celebrate my new boobs with me when that's the last thing I want to do, because again, it will look like I'm "through the hard part."
Maybe I'm scared it'll be "over" for everyone but me. Maybe I'm scared there is no such thing as recovery and moving through this. Maybe I'm scared that I'm going to be scared for the rest of my life and have to hid it behind a smile and a lie.
Maybe I would give anything to have my chest back like it was: saggy, stretch-marked from years of nursing, and a bit too small...
...if it meant never having breast cancer.
Maybe there is nothing that can make me feel "better" about all of this.
When all of this is said and done, maybe I'm scared that everyone's perception of "over" will simply leave me sitting alone in the fear that "over" doesn't exist.
I've always said that "afraid" doesn't apply to me. Nervous? Yes, but afraid? Not me. I can't say that anymore. I have now been afraid for 278 days. 278 long, nauseating, exhausting days. Reconstruction will make me look whole again, and yet, I'm afraid "whole" might no longer be in my vocabulary. I am afraid the cancer will come back. I am afraid that no matter how healed I look, I will never feel well again. None of this makes me feel healed and well and "whole."
Maybe it's as simple as wanting to look as broken and scarred on the outside as I feel on the inside. Looking at all of the ink on my body, it's easy to see that I wear my pain "on my sleeve" for everyone to see. Why should this be any different?
Monday, March 16, 2015
Let's Face It...
I'm lazy. Every time I get in this thing, it is glaringly obvious that the time between blogs keeps getting longer and longer. And it's always some version of the same ol' bullshit. "It's been awhile. I feel bad about that. I should look at that. Some other time ~ I have more important things to write."
But, do I? I have ideas. Goals. Wants. Needs. Desires. Lazy doesn't do any of those things any good; it doesn't bring them any closer. There are times to be lazy and there are times *not* to be lazy. Lazy is easier. It is quieter. It is less exhausting. Lazy is all kinds of things, but one of those things is *not* healthy. I cut off my left breast so I could be healthy again. I went to chemo every Friday for 12 weeks so I could be healthy again. I "willingly" instigated full-blown menopause at the tender age of 45 while in a *brand new* relationship so I could be healthy again. I am offended. I am insulted. I am disappointed by my laziness. I deserve more respect than that.
A wise man once said, “Reality denied comes back to haunt.” That is the truetrue. But a different wise man also said, "A person who has never made a mistake has never made anything." I am quite accomplished at mistake-making. I am so excited to see what is made of more recent mis-steps. But if the accomplishment of "making" something necessitates mistakes, (def. a act or judgement that is misguided or wrong) can you really call it wrong?
But, do I? I have ideas. Goals. Wants. Needs. Desires. Lazy doesn't do any of those things any good; it doesn't bring them any closer. There are times to be lazy and there are times *not* to be lazy. Lazy is easier. It is quieter. It is less exhausting. Lazy is all kinds of things, but one of those things is *not* healthy. I cut off my left breast so I could be healthy again. I went to chemo every Friday for 12 weeks so I could be healthy again. I "willingly" instigated full-blown menopause at the tender age of 45 while in a *brand new* relationship so I could be healthy again. I am offended. I am insulted. I am disappointed by my laziness. I deserve more respect than that.
A wise man once said, “Reality denied comes back to haunt.” That is the truetrue. But a different wise man also said, "A person who has never made a mistake has never made anything." I am quite accomplished at mistake-making. I am so excited to see what is made of more recent mis-steps. But if the accomplishment of "making" something necessitates mistakes, (def. a act or judgement that is misguided or wrong) can you really call it wrong?
Friday, September 12, 2014
TMI - You Can't Say You Weren't Warned
I have never been so scared. Ever. Ever, ever. All I can think is "please, please don't take it all." Both nipples will be gone, eventually. But my strength, my stamina, my.... interest. I won't even call it what it is. I am talking about my "libido" and the physical experience of intimacy. My "interest" is higher than it's ever been in my life. Intimacy has never *felt* better in my life. I'm not ready to... lose this, yet. The treatment I start today, though, could take that away. All of it. And I don't know how to do this. I don't know how to wait and see if my so very young relationship is going to have to try and weather *another* so very unnatural adjustment. Not yet. Just please, not yet. I don't know what bargain I'm willing to make to keep this piece of me just a little bit longer, but I'm willing to talk terms. Please? Hair. I'd be completely willing to lose my hair and both nipples and never complain about any of it if I can just keep this piece. That's got to be worth something in a sentimental, "rings of Akhaten" kind of way ~ my dreads are past my waist. Please, consider it? It's all I feel like I have left to bargain with.
This isn't a very Buddhist reaction. This is what they would define as attachment, I suppose. Except I never had this piece, really, to begin with ~ intimacy I could enjoy that wasn't tainted with one of the myriad of events in my past. Intimacy I enjoyed that didn't make me feel like I was imposing. It feels so *good* to be with him, and I am not ready to lose that, yet. Please? I *like* feeling good. I don't think I took it for granted. But just because you treat a thing exactly right ~ never take it for granted, always appreciate it ~ doesn't mean you won't lose it. It just means that you did it right while you had it. It's easier to lose something, though, when you have someone to blame - even if that someone is yourself. Then something can be done differently "next time" so maybe when the loss present itself again, you know better what to do so as not to lose it. That's the goal behind learning from past mistakes, so the outcome next time around is better. This is the first time I am facing the possibility of losing something that I did everything within my power to keep alive. Everyone involved did. This should be an interesting piece. Talk about new territory...
This isn't a very Buddhist reaction. This is what they would define as attachment, I suppose. Except I never had this piece, really, to begin with ~ intimacy I could enjoy that wasn't tainted with one of the myriad of events in my past. Intimacy I enjoyed that didn't make me feel like I was imposing. It feels so *good* to be with him, and I am not ready to lose that, yet. Please? I *like* feeling good. I don't think I took it for granted. But just because you treat a thing exactly right ~ never take it for granted, always appreciate it ~ doesn't mean you won't lose it. It just means that you did it right while you had it. It's easier to lose something, though, when you have someone to blame - even if that someone is yourself. Then something can be done differently "next time" so maybe when the loss present itself again, you know better what to do so as not to lose it. That's the goal behind learning from past mistakes, so the outcome next time around is better. This is the first time I am facing the possibility of losing something that I did everything within my power to keep alive. Everyone involved did. This should be an interesting piece. Talk about new territory...
Tuesday, August 5, 2014
Discipline
Why has it been so hard, I wonder, to get back in here and do this blogging thing. I *wanted* to share this experience. I *needed* to share it. It's been days and days and days since I blogged. I publicly wondered why on FB yesterday and received a variety of honest and creative answers. None of them were right, I've decided. It's because I don't have the discipline. Anymore, it feels like I used all of my "let's get this sh!t done" ability in graduate school. I would like to say I know that isn't true, but if the last 4 or 5 years or so is any indication... Well... 3 or 4, I guess. I used to say it was time, or lack thereof. I never have the "time" for whatever it is that I'm not doing, in that moment. Lie, lie, lie. Discipline would have made the time - or at least provided a more honest answer. The universe gave me all the time I need weeks ago. Well, three weeks ago, to be exact. Full right radical mastectomy at 45 in a *very young* (at the time-blog for another day) relationship. All the time in the world, it gave me. So THIS is the lesson in this, eh? Discipline and dedication? Ugh. It was so much more entertaining having so many things going on that I could flit from one thing to the next, never staying in one place too long - especially never long enough to *finish* the thing. Ok... ok.... I get it. I'll slow down.
Really, it forced both of us to slow down (ok, short reference to that not-so-new-anymore-relationship). Maybe it saved us. Not that we needed saving, but on the flip side of that statement, doesn't everyone? One of many continually evolving results of this slow down? I've never felt this strong... this confident... this capable... or this attractive, actually. I've always known that, for me, confidence - appropriately placed and well-balanced - is sexy. I've also always considered myself a rather confident person, but I've never really felt "sexy." And I'm not going all base and carnal and instinct here. If I say someone is "sexy," I'm really saying they are... intriguing. Interesting. Engaging. Attractive, but DEFINITELY not just physically. Magnetic. Mysterious. If I call someone sexy, I'm admitting that they have a factor of "irresistible" for me that includes both inner and outer qualities. Basically, I guess I have to know someone before I can determine if I consider them "sexy" or not. I've never thought of myself that way. I've never felt that any of those words described *me.* Until recently. Maybe I'm finally getting to know myself a little bit. Or maybe I've engaged the ultimate self-esteem protective mechanisms~denial and delusion, and someday, maybe tomorrow, maybe next week, maybe next year, it will all come crashing down around my head, and I will look in the mirror, finally seeing the 'mutilated freak' that many have seen in their own post-mastectomy mirrors. It's a possibility. In some dimension, I suppose. But I've looked in the mirror *a lot* over the last three weeks. I've taken pictures and looked at them. I've even zoomed in to see the changes up close. And unless I've *always* been a mutilated freak and just never known it, that's just not what I see. I see me. And I like what I see.
I know many women who have had to go through a mastectomy would not agree. And that's perfectly fine. I do hope not to be judged by any of my new BC family, but it could happen. I grabbed the "mutilated freak" phrase from a breast cancer discussion board. A post-surgery woman wrote something to the effect of, "of course I am wearing a prosthetic until I can have the reconstruction - I would *never* leave the house looking like a mutilated freak..." I have chosen not to wear a prosthetic. I will have a reconstruction, when it is medically feasible, but... I'm almost going to miss this step - this stage. I like me more now than I ever have in my life. But if my breast wasn't part of my self-esteem calculation before surgery, it shouldn't be now, either. Basically, it shouldn't matter what my chest looks like or if I have the reconstruction. Hmmmm. I like looking at it that way.
But that still leave thousands - maybe hundreds of thousands - of women out there that are *not* comfortable with how they look post-boob-removal. I'm not even going to speculate on that. There are *so* many reasons for that, and none of the reasons are really my concern. I did read an article recently, though, that got me thinking about this issue of body, health, and self-esteem. At Salon.com, I ran across an article called "You Don't Have to Dance at Your Mastectomy." It's about an OB/Gyn who asked her OR - and the entire nation - to dance with her for 5 minutes before laying down on the operating table to have a double mastectomy. As the author points out, it's the kind of feel-good, oh-I-could-never-be-that-strong-but-thank-god-someone-is kind of story that eventually makes it way onto Lifetime or the Sundance Channel, inspiring reporters covering to quippingly ask "What do you do before a double mastectomy? Dance, of course!" The author's response to that answer? "Blow me."
I can definitely see how most people would not dance into *any* surgery involving the word cancer. But I can also see how some would. I might even venture to say "have to." But just as a dancing mastectomy shouldn't worry about how others in similar situations behave, shaking, scared, crying mastectomies shouldn't compare themselves to the dancers. I'm willing to bet~largely based on personal experience~that the dancers have their own hidden demons, they are just different than the ones that make you shake and cry and freak out in the face of cancer. They are the demons that make some people dance, instead. But don't let them fool you. They are still demons.
http://www.salon.com/2013/11/08/you_dont_have_to_dance_at_your_mastectomy/
Really, it forced both of us to slow down (ok, short reference to that not-so-new-anymore-relationship). Maybe it saved us. Not that we needed saving, but on the flip side of that statement, doesn't everyone? One of many continually evolving results of this slow down? I've never felt this strong... this confident... this capable... or this attractive, actually. I've always known that, for me, confidence - appropriately placed and well-balanced - is sexy. I've also always considered myself a rather confident person, but I've never really felt "sexy." And I'm not going all base and carnal and instinct here. If I say someone is "sexy," I'm really saying they are... intriguing. Interesting. Engaging. Attractive, but DEFINITELY not just physically. Magnetic. Mysterious. If I call someone sexy, I'm admitting that they have a factor of "irresistible" for me that includes both inner and outer qualities. Basically, I guess I have to know someone before I can determine if I consider them "sexy" or not. I've never thought of myself that way. I've never felt that any of those words described *me.* Until recently. Maybe I'm finally getting to know myself a little bit. Or maybe I've engaged the ultimate self-esteem protective mechanisms~denial and delusion, and someday, maybe tomorrow, maybe next week, maybe next year, it will all come crashing down around my head, and I will look in the mirror, finally seeing the 'mutilated freak' that many have seen in their own post-mastectomy mirrors. It's a possibility. In some dimension, I suppose. But I've looked in the mirror *a lot* over the last three weeks. I've taken pictures and looked at them. I've even zoomed in to see the changes up close. And unless I've *always* been a mutilated freak and just never known it, that's just not what I see. I see me. And I like what I see.
I know many women who have had to go through a mastectomy would not agree. And that's perfectly fine. I do hope not to be judged by any of my new BC family, but it could happen. I grabbed the "mutilated freak" phrase from a breast cancer discussion board. A post-surgery woman wrote something to the effect of, "of course I am wearing a prosthetic until I can have the reconstruction - I would *never* leave the house looking like a mutilated freak..." I have chosen not to wear a prosthetic. I will have a reconstruction, when it is medically feasible, but... I'm almost going to miss this step - this stage. I like me more now than I ever have in my life. But if my breast wasn't part of my self-esteem calculation before surgery, it shouldn't be now, either. Basically, it shouldn't matter what my chest looks like or if I have the reconstruction. Hmmmm. I like looking at it that way.
But that still leave thousands - maybe hundreds of thousands - of women out there that are *not* comfortable with how they look post-boob-removal. I'm not even going to speculate on that. There are *so* many reasons for that, and none of the reasons are really my concern. I did read an article recently, though, that got me thinking about this issue of body, health, and self-esteem. At Salon.com, I ran across an article called "You Don't Have to Dance at Your Mastectomy." It's about an OB/Gyn who asked her OR - and the entire nation - to dance with her for 5 minutes before laying down on the operating table to have a double mastectomy. As the author points out, it's the kind of feel-good, oh-I-could-never-be-that-strong-but-thank-god-someone-is kind of story that eventually makes it way onto Lifetime or the Sundance Channel, inspiring reporters covering to quippingly ask "What do you do before a double mastectomy? Dance, of course!" The author's response to that answer? "Blow me."
I can definitely see how most people would not dance into *any* surgery involving the word cancer. But I can also see how some would. I might even venture to say "have to." But just as a dancing mastectomy shouldn't worry about how others in similar situations behave, shaking, scared, crying mastectomies shouldn't compare themselves to the dancers. I'm willing to bet~largely based on personal experience~that the dancers have their own hidden demons, they are just different than the ones that make you shake and cry and freak out in the face of cancer. They are the demons that make some people dance, instead. But don't let them fool you. They are still demons.
http://www.salon.com/2013/11/08/you_dont_have_to_dance_at_your_mastectomy/
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