Email:
Hi (Jackass),
I just saw the news on the hurricane - it looks like people are being told to evacuate - if so, please let me know where and when you will take the boys.
Thanks,
Violet
24 hours later:
Violet, schools are closed I'll let you know if we decide to evacuate. (Jackass)
Mmm hmm. Yes, I know schools are closed. They are closed because the Governor ordered a mass evacuation for your coastal county, urging people to leave early. According to CNN, a quarter million residents have already left, with another 200,000 planning to leave tomorrow.
But it appears that you know better, you of superior wisdom and decision making, are not gonna let some government official control your life. For that matter, you're not gonna let Mother Nature control you either. I can so easily picture you, like a little toddler shouting "You're not the boss of me!". And the #DoubleWin of being evasive, not letting a mother know there is a plan to ensure safety of the children. Another "You're not the boss of me! I'm not gonna share information with you, you bitch who left me and shall forever be punished". Oh, and yeah, I should add that Jackass works for NOAA. So of course, he knows better than those (stupid, inferior) weather experts. He's not gonna let them control him either. #TripleWin
If it weren't for our children, I would be having a roaring laugh over this little toddler-man, who when when he does this (it is his baseline default mode), resembles Rumplestiltskin jumping up and down in a raging tantrum. But for this, I just have to say a prayer, keep my focus off this wingnut garden gnome and hope the Wifetress* convinces him to evacuate.
*The mistress who became wife #3 and to whom I am profoundly grateful for a) taking Rumplestiltskin, which released me into freedom from abuse and b) being what appears to be a responsible adult in that household, which is a really good thing re: our kids. But that's a whole 'nother story or two...
Thursday, October 6, 2016
Monday, October 21, 2013
October Awareness: Breast Cancer Is Neither Pink Nor Pretty
For as far back as I can remember, there has always been something about October "awareness" and the whole pink ribbon extravaganza that has made me feel slightly on edge and—ok, I admit it—a little bit pissed off. But beyond recognizing the emerging commercialization of breast cancer in the nineties, I could never really understand why this is so. Of course, now that I am in remission for breast cancer, I am royally pissed, and for other reasons that have become all too painfully clear. But first, let me begin at the beginning.
Many years ago, when I was a post-doc, there was an annoying 20-something tech in our lab—picture a former sorority girl type, high drama and professionally immature, always looking to cut corners so she could leave work early, and so calorie-obsessed that you wanted, for the love of God (and carbohydrates), to take the her to the cafeteria for a real lunch. Anyway, each fall this young woman became fixated on special pink ribbon embossed aluminum lids that, in support of breast cancer awareness, adorned a popular brand of yogurt. She was quite insistent that everyone on our floor who ate this yogurt should bring her the pink ribbon lids so she could mail them to the company, which would donate money to a nationally recognized non-profit in exchange for each lid received. And adamant she was: I remember one morning racing around the lab, simultaneously setting up three different experiments, spending approximately five leisurely minutes shoveling down breakfast (i.e. yogurt), and then tossing the empty container during my sprint back to the lab bench. Before I could even finish gloving up and arranging my microtubes in their rack, there was the tech, over in the corner, rummaging through the wastebasket to retrieve the pink ribbon lid. Until today, I have never admitted that I was the person who committed this atrocity.
At the time, I thought it all seemed pretty pointless. I mean, don't get me wrong, I am all for funding breast cancer awareness and research, but in the back of my mind I couldn't help wonder why this company just didn't donate the money outright? That is, why did consumers have to trouble themselves to carefully remove those damn lids, wash them, and then find a stamp and then an envelope and then mail them to the company in order that they would donate? Now, I don't think this tech ever read much of anything, much less the fine print, but had she ventured there she would have learned that there was a maximum amount that this company was willing to give, an amount that seemed quite paltry considering the profit they probably made off of this particular product alone. Back then (circa 1998-2000) we were talking about $500,000. Chump change. Since the world is full of many others like this well meaning tech, it was pretty clear that the company would be receiving an inordinate number of lids, far surpassing that "needed" for their donation (do you hear the cha-ching, cha-ching of the cash registers?). So, back then it was the commercialization of breast cancer--by food companies and a few others in the quest for the almighty dollar--that launched the vague pissy-ness I began to feel about October "awareness". But overall I tended not to dwell on stuff like this (other than to deliberately start purchasing another brand of yogurt--you know, one without any pink gimmicky crap), so my pissy-ness was pretty well contained while I spent my time on science and…well, more science (for the non-scientists, this is the typical post-doc lifestyle; that is, time spent on extracurricular activities such as sleep, or outside interests such as friends or family, is done at the peril of not being good enough to one day land a real job--or at least that's the bullshit message far too many young scientists assimilate).
And so for about a decade, I remained tethered to my lab bench and every October I thought the commercial aspect of the “awareness” was pretty much it, the impetus for my pink ribbon aversion.
That is, until the year I was diagnosed.
This time, when the pink ribbon extravaganza arrived (and it seems to be a bit like Christmas—just as the red and green holiday items that once were prominently displayed by Thanksgiving are starting to appear right after Halloween, the pink that was once reserved for October starts creeping in a little earlier each year), I already was undergoing chemotherapy, having reached level II toxicity as early as my second treatment cycle, which caused a mental fog so thick that on many days I couldn’t keep track of my medication schedule, sometimes taking double doses and other times forgetting altogether the oral chemotherapy drug that was intended to bolster the infusion drugs. On top of this were the debilitating physical effects, including hands that became too blistered to pick up a fork or spoon to feed myself (not that it mattered all that much—I was far too nauseous most of the time to even contemplate eating) and feet so raw that there were days that I literally couldn’t take a step without collapsing in pain. There wasn’t much coherent thinking then, but I am certain that this is when a deep visceral repulsion started to develop, one that eventually replaced the comparatively mild aversion I had had in years past over the pink ribbons. I didn’t yet understand it, but I loathed those damn ubiquitous pink ribbons.
Have you ever seen someone who is undergoing chemotherapy, or radiation therapy, or recovering from a mastectomy? Let me tell you, there is a tremendous disconnect between pink and breast cancer. I learned quite early in my girlhood—as myself and countless others were indoctrinated into the world of Barbie, where the seeds of body image and self esteem issues took root alongside desire to reside in the Dreamhouse, to marry Ken, and to drive the pink Corvette—that pink represented all the things that would ensure a life lived happily ever after. In short, pink became indelibly imprinted with beauty…happiness… success. But cancer? Oh, no. Cancer is the antithesis of pink; cancer is horrifically un-beautiful. From the steriod-induced puffiness, the unsightly bald head and missing lashes and brows and blackened fragments of nails--to the sickly, sallow pallor of post-chemotherapy nausea, the ravages of chemically-induced menopause, and the disfiguring scars where there once was a breast (or two)--breast cancer is downright ugly. With every passing treatment, as my body weathered each gruesome change, I hated, yes hated, those damn pink ribbons. Everywhere I went, everywhere I looked, there was a reminder of the disease I had, and of what I was losing to it. From yogurt to test-driving BMWs, and to toasters, blenders and other assorted kitchen gadgets that my undomestic self cannot name, much less operate, there was no escape. There was even a retro looking pink toilet tissue that paradoxically did give me a moment of much needed comic relief when I pictured thousands of well intentioned supporters wiping “for the cure”.
But back on point, one of the hardest hitting reminders was that one of those losses was my femininity, a loss that was particularly difficult to process while surrounded by young women wearing tee-shirts reading "save the ta-tas" or ads for local bars announcing wet tee-shirt contests with proceeds earmarked for breast cancer "awareness". Even women (and to some extent men, too) wearing the simple unadorned pink ribbon or the occasional pink tie or scarf were hard to face; these people were healthy (or at least appeared so--I realize that some of them may have been cancer survivors), they had hair and they had unbutchered bodies (well, ok, maybe some of them had great plastic surgeons). But my point is that at the time, it still was another reminder of what I was and what I wasn't. And let's face it, I don't think there are many women who could get through breast cancer in our culture without taking a hit in the body image department. On top of the cancer, I had recently left a long term marriage, one in which for years I had believed myself to be unattractive and undesirable (philandering, sociopathic, porn-addicted husbands excel in shredding self-esteem in their wives), and with this as my starting point at diagnosis, there were many, just far too many days when my hatred turned inward, when I despised myself even more than the pink ribbons or the beautiful people wearing them.
Of course I did make it through chemotherapy and “Pinktober” as it is aptly called by those in the trenches, but there were rounds two (surgery), three (radiation) and four (more chemo) looming in the not so distant future. Because my tumors were so large, I underwent chemotherapy in hope of reducing their size, which in turn would decrease risk of potential damage to surrounding tissues (such as nerves) during the bilateral mastectomy. With each successive pre-surgical chemotherapy cycle (there were 8 total, spread out over the course of about six months), the tumors in my breast and lymph nodes became barely palpable, a result that gave my medical team and myself considerable optimism. The day after my surgery, which I had scheduled on December 30 (thinking that spending New Years eve bald, sick and alone would be depressing, so why not add a little surgical pain and some more body image crisis to the mix?), my surgeon visited my room with a glowing smile and told me that my response to chemotherapy was tremendous, with only a very small residual mass visible where there had once been a 5 centimeter+ tumor. And with much to celebrate, I tried my best to get the nurses on my floor to share the champagne that I was certain they had stashed somewhere out of view (I ended up settling for a vanilla ice cream and a narcotic induced bliss that carried me into one of the most restful sleeps I had had in very nearly a year).
But then came the post-surgical pathology report. Despite an absence of overtly visible cancer in my lymph nodes, all but two were found still to harbor “viable tumor” when they were examined microscopically. My optimism and celebration plummeted instantaneously and all I could think about, besides my two young children, was the mass email I had sent just days before, announcing the wondrous success of my treatments. I cried, not uncontrollably like I had during one of my chemo cycles, but rather with the quiet distress of a veteran, one who had studied the cancer literature so well that I should have been awarded an honorary doctorate to keep my real one company. And in this distressed state of mind, I went back home—alone—and crawled into the corner of the sofa, huddled beneath the soft blanket that a friend had lovingly given to me as part of a treatment survival kit. In attempt to ward off the inevitable depression and to let my shock dissipate (running was not an option so soon post-surgery), I logged on to Facebook, intending to distract myself by spending a couple of mindless hours perusing the holiday antics of my friends and racking up some points on Sorority Life (one of many popular Facebook-sponsored online games).
I still remember the riveting sickness in my gut when I opened the many messages in my inbox. The first one went like this:
"We are playing a game for Breast Cancer Awareness ...... write the color of your bra as your status, just the color, nothing else!! Copy this and pass it on to all girls ...... NO MEN!! This will be fun to see how it spreads, and we are leaving the men wondering why all females just have a color as their status!! Let's have fun!
There were at least five different versions of this message in my box, a “game” that had gone so viral that the mainstream media even picked up on it by the end of the week. As I sat there, with two raw slashes on my chest and three surgical drains hanging out of my body, filled with blood tinged fluid that seemed never to stop flowing, I felt a nausea like no other, one that surpassed anything I had felt during the not so distant days of chemotherapy. Finally, it was all starting to make some sense—the images of beautiful young women wearing pink, the “save the ta tas” merchandise and bumper stickers on cars and pick-up trucks (many driven by men), the wet tee-shirt contests, and the girlish giggling and titillation over public disclosure of one’s bra color—at the root of all this was the sexualization of breast cancer.
I don’t quite know when the pink campaign became co-opted in such a sexist fashion, but putting the pieces together unleashed a hurt in me that had me so revved up that I could not clearly articulate it when I tried to talk to two of my close friends later that evening. The many thoughts and emotions stemming from this were compounded by the fear and disappointment that I felt over the post-surgical path report. Save the ta-tas they say? How about saving some fucking lives? is what I wanted to scream. The more academic side of me also was busy deconstructing the viral Facebook “game” trying to comprehend why women were willingly participating in such a sexist activity and why no one but me seemed to object to being called “girls” who were going to leave the “men” wondering. And as for “awareness”, I’m pretty sure that there are very few women, at least in developed countries with access to healthcare, who don’t already know about the importance of breast self-exams or mammography. And for this theoretical minority of those who don’t know about routine screening, I just couldn’t figure out how peeking down one’s shirt to look at bra color would convey useful information.
Many years ago, when I was a post-doc, there was an annoying 20-something tech in our lab—picture a former sorority girl type, high drama and professionally immature, always looking to cut corners so she could leave work early, and so calorie-obsessed that you wanted, for the love of God (and carbohydrates), to take the her to the cafeteria for a real lunch. Anyway, each fall this young woman became fixated on special pink ribbon embossed aluminum lids that, in support of breast cancer awareness, adorned a popular brand of yogurt. She was quite insistent that everyone on our floor who ate this yogurt should bring her the pink ribbon lids so she could mail them to the company, which would donate money to a nationally recognized non-profit in exchange for each lid received. And adamant she was: I remember one morning racing around the lab, simultaneously setting up three different experiments, spending approximately five leisurely minutes shoveling down breakfast (i.e. yogurt), and then tossing the empty container during my sprint back to the lab bench. Before I could even finish gloving up and arranging my microtubes in their rack, there was the tech, over in the corner, rummaging through the wastebasket to retrieve the pink ribbon lid. Until today, I have never admitted that I was the person who committed this atrocity.
At the time, I thought it all seemed pretty pointless. I mean, don't get me wrong, I am all for funding breast cancer awareness and research, but in the back of my mind I couldn't help wonder why this company just didn't donate the money outright? That is, why did consumers have to trouble themselves to carefully remove those damn lids, wash them, and then find a stamp and then an envelope and then mail them to the company in order that they would donate? Now, I don't think this tech ever read much of anything, much less the fine print, but had she ventured there she would have learned that there was a maximum amount that this company was willing to give, an amount that seemed quite paltry considering the profit they probably made off of this particular product alone. Back then (circa 1998-2000) we were talking about $500,000. Chump change. Since the world is full of many others like this well meaning tech, it was pretty clear that the company would be receiving an inordinate number of lids, far surpassing that "needed" for their donation (do you hear the cha-ching, cha-ching of the cash registers?). So, back then it was the commercialization of breast cancer--by food companies and a few others in the quest for the almighty dollar--that launched the vague pissy-ness I began to feel about October "awareness". But overall I tended not to dwell on stuff like this (other than to deliberately start purchasing another brand of yogurt--you know, one without any pink gimmicky crap), so my pissy-ness was pretty well contained while I spent my time on science and…well, more science (for the non-scientists, this is the typical post-doc lifestyle; that is, time spent on extracurricular activities such as sleep, or outside interests such as friends or family, is done at the peril of not being good enough to one day land a real job--or at least that's the bullshit message far too many young scientists assimilate).
And so for about a decade, I remained tethered to my lab bench and every October I thought the commercial aspect of the “awareness” was pretty much it, the impetus for my pink ribbon aversion.
That is, until the year I was diagnosed.
This time, when the pink ribbon extravaganza arrived (and it seems to be a bit like Christmas—just as the red and green holiday items that once were prominently displayed by Thanksgiving are starting to appear right after Halloween, the pink that was once reserved for October starts creeping in a little earlier each year), I already was undergoing chemotherapy, having reached level II toxicity as early as my second treatment cycle, which caused a mental fog so thick that on many days I couldn’t keep track of my medication schedule, sometimes taking double doses and other times forgetting altogether the oral chemotherapy drug that was intended to bolster the infusion drugs. On top of this were the debilitating physical effects, including hands that became too blistered to pick up a fork or spoon to feed myself (not that it mattered all that much—I was far too nauseous most of the time to even contemplate eating) and feet so raw that there were days that I literally couldn’t take a step without collapsing in pain. There wasn’t much coherent thinking then, but I am certain that this is when a deep visceral repulsion started to develop, one that eventually replaced the comparatively mild aversion I had had in years past over the pink ribbons. I didn’t yet understand it, but I loathed those damn ubiquitous pink ribbons.
Have you ever seen someone who is undergoing chemotherapy, or radiation therapy, or recovering from a mastectomy? Let me tell you, there is a tremendous disconnect between pink and breast cancer. I learned quite early in my girlhood—as myself and countless others were indoctrinated into the world of Barbie, where the seeds of body image and self esteem issues took root alongside desire to reside in the Dreamhouse, to marry Ken, and to drive the pink Corvette—that pink represented all the things that would ensure a life lived happily ever after. In short, pink became indelibly imprinted with beauty…happiness… success. But cancer? Oh, no. Cancer is the antithesis of pink; cancer is horrifically un-beautiful. From the steriod-induced puffiness, the unsightly bald head and missing lashes and brows and blackened fragments of nails--to the sickly, sallow pallor of post-chemotherapy nausea, the ravages of chemically-induced menopause, and the disfiguring scars where there once was a breast (or two)--breast cancer is downright ugly. With every passing treatment, as my body weathered each gruesome change, I hated, yes hated, those damn pink ribbons. Everywhere I went, everywhere I looked, there was a reminder of the disease I had, and of what I was losing to it. From yogurt to test-driving BMWs, and to toasters, blenders and other assorted kitchen gadgets that my undomestic self cannot name, much less operate, there was no escape. There was even a retro looking pink toilet tissue that paradoxically did give me a moment of much needed comic relief when I pictured thousands of well intentioned supporters wiping “for the cure”.
But back on point, one of the hardest hitting reminders was that one of those losses was my femininity, a loss that was particularly difficult to process while surrounded by young women wearing tee-shirts reading "save the ta-tas" or ads for local bars announcing wet tee-shirt contests with proceeds earmarked for breast cancer "awareness". Even women (and to some extent men, too) wearing the simple unadorned pink ribbon or the occasional pink tie or scarf were hard to face; these people were healthy (or at least appeared so--I realize that some of them may have been cancer survivors), they had hair and they had unbutchered bodies (well, ok, maybe some of them had great plastic surgeons). But my point is that at the time, it still was another reminder of what I was and what I wasn't. And let's face it, I don't think there are many women who could get through breast cancer in our culture without taking a hit in the body image department. On top of the cancer, I had recently left a long term marriage, one in which for years I had believed myself to be unattractive and undesirable (philandering, sociopathic, porn-addicted husbands excel in shredding self-esteem in their wives), and with this as my starting point at diagnosis, there were many, just far too many days when my hatred turned inward, when I despised myself even more than the pink ribbons or the beautiful people wearing them.
Of course I did make it through chemotherapy and “Pinktober” as it is aptly called by those in the trenches, but there were rounds two (surgery), three (radiation) and four (more chemo) looming in the not so distant future. Because my tumors were so large, I underwent chemotherapy in hope of reducing their size, which in turn would decrease risk of potential damage to surrounding tissues (such as nerves) during the bilateral mastectomy. With each successive pre-surgical chemotherapy cycle (there were 8 total, spread out over the course of about six months), the tumors in my breast and lymph nodes became barely palpable, a result that gave my medical team and myself considerable optimism. The day after my surgery, which I had scheduled on December 30 (thinking that spending New Years eve bald, sick and alone would be depressing, so why not add a little surgical pain and some more body image crisis to the mix?), my surgeon visited my room with a glowing smile and told me that my response to chemotherapy was tremendous, with only a very small residual mass visible where there had once been a 5 centimeter+ tumor. And with much to celebrate, I tried my best to get the nurses on my floor to share the champagne that I was certain they had stashed somewhere out of view (I ended up settling for a vanilla ice cream and a narcotic induced bliss that carried me into one of the most restful sleeps I had had in very nearly a year).
But then came the post-surgical pathology report. Despite an absence of overtly visible cancer in my lymph nodes, all but two were found still to harbor “viable tumor” when they were examined microscopically. My optimism and celebration plummeted instantaneously and all I could think about, besides my two young children, was the mass email I had sent just days before, announcing the wondrous success of my treatments. I cried, not uncontrollably like I had during one of my chemo cycles, but rather with the quiet distress of a veteran, one who had studied the cancer literature so well that I should have been awarded an honorary doctorate to keep my real one company. And in this distressed state of mind, I went back home—alone—and crawled into the corner of the sofa, huddled beneath the soft blanket that a friend had lovingly given to me as part of a treatment survival kit. In attempt to ward off the inevitable depression and to let my shock dissipate (running was not an option so soon post-surgery), I logged on to Facebook, intending to distract myself by spending a couple of mindless hours perusing the holiday antics of my friends and racking up some points on Sorority Life (one of many popular Facebook-sponsored online games).
I still remember the riveting sickness in my gut when I opened the many messages in my inbox. The first one went like this:
"We are playing a game for Breast Cancer Awareness ...... write the color of your bra as your status, just the color, nothing else!! Copy this and pass it on to all girls ...... NO MEN!! This will be fun to see how it spreads, and we are leaving the men wondering why all females just have a color as their status!! Let's have fun!
There were at least five different versions of this message in my box, a “game” that had gone so viral that the mainstream media even picked up on it by the end of the week. As I sat there, with two raw slashes on my chest and three surgical drains hanging out of my body, filled with blood tinged fluid that seemed never to stop flowing, I felt a nausea like no other, one that surpassed anything I had felt during the not so distant days of chemotherapy. Finally, it was all starting to make some sense—the images of beautiful young women wearing pink, the “save the ta tas” merchandise and bumper stickers on cars and pick-up trucks (many driven by men), the wet tee-shirt contests, and the girlish giggling and titillation over public disclosure of one’s bra color—at the root of all this was the sexualization of breast cancer.
I don’t quite know when the pink campaign became co-opted in such a sexist fashion, but putting the pieces together unleashed a hurt in me that had me so revved up that I could not clearly articulate it when I tried to talk to two of my close friends later that evening. The many thoughts and emotions stemming from this were compounded by the fear and disappointment that I felt over the post-surgical path report. Save the ta-tas they say? How about saving some fucking lives? is what I wanted to scream. The more academic side of me also was busy deconstructing the viral Facebook “game” trying to comprehend why women were willingly participating in such a sexist activity and why no one but me seemed to object to being called “girls” who were going to leave the “men” wondering. And as for “awareness”, I’m pretty sure that there are very few women, at least in developed countries with access to healthcare, who don’t already know about the importance of breast self-exams or mammography. And for this theoretical minority of those who don’t know about routine screening, I just couldn’t figure out how peeking down one’s shirt to look at bra color would convey useful information.
Saturday, October 30, 2010
Bon Voyage
Well, it certainly wasn't one of my finest moments, but I must say it was one that kept me giggling all day, especially after confirming with a friend that it was not an over the top, heinous, evil move on my part.
So where to start...
I haven't yet gone into the story of Jackass, but the nano version is that I was in an abusive relationship for nearly 20 years with a man who I now understand to be a sociopath. Bona fide. No, I'm not kidding.
I had the audacity to leave my marriage to said individual after a number of twisted events/discoveries that culminated in him physically assaulting me in front of our two young children. This is a decision for which I have been, and fully expect to continue to be, "punished" for a very long time.
Jackass is the ultimate manipulator, with finely honed skills that span the passive-aggressive spectrum. But when he volleyed his latest the other day, I couldn't resist: I hit one back.
I had a voicemail from an airline (one that I have never, not once in my life flown) informing me of my confirmation number and letting me know that I could check-in online. I knew he was scheduled to travel (due to re-arranging our childrens' schedule) but I intentionally did not ask where, or exactly for how long, he would be gone. To not show even the slightest remote interest in this was denying him what is termed "narcissistic supply", which is quite an affront to someone in the Cluster B category (google this if you want to learn more--it's morbidly fascinating that there are these sub-humans living amongst us).
Anyway, because there is absolutely no earthly reason why this airline would have my cell phone number associated with his name, I knew immediately that this was his way of "hoovering", i.e. trying to engage me, to place himself back into my thoughts and emotions (I have gone what is termed LC, for "low contact", which tends to incite this type of behavior). And when I decided to logon and check things out, I also realized that this was an attempt to dangle in front of me something that he knew that I had wanted: a trip to Greece. Yes, within months before my leaving him, he and I had intended to go, to rent a little villa for a couple of weeks in some romantic locale, and to escape into a state of bliss. Or something like that. Anyway, the old me would have been hurt by the prospect of him doing this with someone else. That no longer matters to me, although I did have a moment of being pretty pissed that it was him and not me, who is getting to make this trip. After all, it is still on my bucket list of the top 5 places I want to explore before...well, you know, before no longer needing that list. So I suppose this is what prompted me to do what I did.
I pondered my options for a minute or so---cancel the flight? No. Too vengeful, not my style at all. Do nothing? No. I heard in the back of my head the voice of my therapist, who maintains that "bad" behavior by these types should be discouraged. So then it came to me. The seating chart. With one little click, a reassignment from that window seat near the front of coach to a middle seat in the middle column, in the very last row by the lavatories. To be fair (well ok, and to minimize his figuring this out in advance of boarding), I changed only the international flight, not the domestic one.
So there you go...I have learned to return those curveballs.
Oh, and hope you had a good flight, Jackass. All 9 hours and 40 minutes.
So where to start...
I haven't yet gone into the story of Jackass, but the nano version is that I was in an abusive relationship for nearly 20 years with a man who I now understand to be a sociopath. Bona fide. No, I'm not kidding.
I had the audacity to leave my marriage to said individual after a number of twisted events/discoveries that culminated in him physically assaulting me in front of our two young children. This is a decision for which I have been, and fully expect to continue to be, "punished" for a very long time.
Jackass is the ultimate manipulator, with finely honed skills that span the passive-aggressive spectrum. But when he volleyed his latest the other day, I couldn't resist: I hit one back.
I had a voicemail from an airline (one that I have never, not once in my life flown) informing me of my confirmation number and letting me know that I could check-in online. I knew he was scheduled to travel (due to re-arranging our childrens' schedule) but I intentionally did not ask where, or exactly for how long, he would be gone. To not show even the slightest remote interest in this was denying him what is termed "narcissistic supply", which is quite an affront to someone in the Cluster B category (google this if you want to learn more--it's morbidly fascinating that there are these sub-humans living amongst us).
Anyway, because there is absolutely no earthly reason why this airline would have my cell phone number associated with his name, I knew immediately that this was his way of "hoovering", i.e. trying to engage me, to place himself back into my thoughts and emotions (I have gone what is termed LC, for "low contact", which tends to incite this type of behavior). And when I decided to logon and check things out, I also realized that this was an attempt to dangle in front of me something that he knew that I had wanted: a trip to Greece. Yes, within months before my leaving him, he and I had intended to go, to rent a little villa for a couple of weeks in some romantic locale, and to escape into a state of bliss. Or something like that. Anyway, the old me would have been hurt by the prospect of him doing this with someone else. That no longer matters to me, although I did have a moment of being pretty pissed that it was him and not me, who is getting to make this trip. After all, it is still on my bucket list of the top 5 places I want to explore before...well, you know, before no longer needing that list. So I suppose this is what prompted me to do what I did.
I pondered my options for a minute or so---cancel the flight? No. Too vengeful, not my style at all. Do nothing? No. I heard in the back of my head the voice of my therapist, who maintains that "bad" behavior by these types should be discouraged. So then it came to me. The seating chart. With one little click, a reassignment from that window seat near the front of coach to a middle seat in the middle column, in the very last row by the lavatories. To be fair (well ok, and to minimize his figuring this out in advance of boarding), I changed only the international flight, not the domestic one.
So there you go...I have learned to return those curveballs.
Oh, and hope you had a good flight, Jackass. All 9 hours and 40 minutes.
Friday, February 19, 2010
Three Sentences
Ok, first off, I know it's been a really, really long time since my last post. This doesn't mean that I haven't been writing or even more importantly, that I haven't been thinking. A tremendous amount of activities--some medical, some not--coupled with an introverted state of mind, account for this.
Fast forward to now. Ended up in the hospital earlier this week with a post-surgical complication that was so painful that I truly was scared that I might die. This level of fear is rare for me, and as it turns out, one of the docs told me that had the problem been left unresolved, it easily could have been fatal (tangential note to self: congratulations on coming out of a 20-year fog and re-learning to trust your intuition). During my transport in the ambulance from my physician's office to the hospital (when we still didn't grasp what the problem was other than there was pain that couldn't be controlled, even by narcotics), I felt compelled to compose something to leave for my children in the event of...ummm...well...you know.....
Anyway, I kept it to 3 sentences, thinking ever pragmatically that 3 sentences would be easy to write or to dictate to someone if needed. Here is the distillation of thoughts that were running rampant during that ride:
To my most Special Boy and my most Precious Boy,
The purpose of life: To leave the world in a better condition than it was when you entered.
Instructions: Try to live every day with integrity and to take as many opportunities as you reasonably can to experience the joy of putting someone else ahead of yourself.
Parting words: I certainly am at a great loss to tell you how deeply I love each of you, but I hope that one day when you have a child of your own, this experience will more than make up for my lack of words--especially if you remember back to this note and double the bliss, gratitude, and wondrous blessing that you feel the first time you hold your special, precious newborn in your arms.
All my love, forever and always--
Mommy
As I transcribe these thoughts tonight and think more about the things that seemed most fundamental and heart-felt that day, I still stand by them. What you (my boys) don't yet know is that I am starting to create books and boxes for each of you, books and boxes that will be filled with photos, reading lists, stories of your childhood, birthday and bar mitzvah gifts, and to my best effort, the types of conversations that I hope to have with you as you grow into young men, but that will nevertheless be written down "just in case". By no means is this even remotely a mind-set of "giving up"--but for my own peace of mind, especially as I go through treatment, it is imperative to me that you have as much as possible, whatever I can give you--should that day come too soon. And for every year that passes, I will celebrate with immense joy and gratitude for the milestones that we have shared, and smile in private victory as I move yet another item or letter into your "before" box.
This is much of what has captured my focus and kept me from completing draft posts that have been lingering untouched for the past few months. Oh, and compilation of a second bucket list*--one that I am planning for the stuff I want to do after I die. I promise to be back soon.
*item number 1 is to take dance lessons from Michael Jackson
Fast forward to now. Ended up in the hospital earlier this week with a post-surgical complication that was so painful that I truly was scared that I might die. This level of fear is rare for me, and as it turns out, one of the docs told me that had the problem been left unresolved, it easily could have been fatal (tangential note to self: congratulations on coming out of a 20-year fog and re-learning to trust your intuition). During my transport in the ambulance from my physician's office to the hospital (when we still didn't grasp what the problem was other than there was pain that couldn't be controlled, even by narcotics), I felt compelled to compose something to leave for my children in the event of...ummm...well...you know.....
Anyway, I kept it to 3 sentences, thinking ever pragmatically that 3 sentences would be easy to write or to dictate to someone if needed. Here is the distillation of thoughts that were running rampant during that ride:
To my most Special Boy and my most Precious Boy,
The purpose of life: To leave the world in a better condition than it was when you entered.
Instructions: Try to live every day with integrity and to take as many opportunities as you reasonably can to experience the joy of putting someone else ahead of yourself.
Parting words: I certainly am at a great loss to tell you how deeply I love each of you, but I hope that one day when you have a child of your own, this experience will more than make up for my lack of words--especially if you remember back to this note and double the bliss, gratitude, and wondrous blessing that you feel the first time you hold your special, precious newborn in your arms.
All my love, forever and always--
Mommy
As I transcribe these thoughts tonight and think more about the things that seemed most fundamental and heart-felt that day, I still stand by them. What you (my boys) don't yet know is that I am starting to create books and boxes for each of you, books and boxes that will be filled with photos, reading lists, stories of your childhood, birthday and bar mitzvah gifts, and to my best effort, the types of conversations that I hope to have with you as you grow into young men, but that will nevertheless be written down "just in case". By no means is this even remotely a mind-set of "giving up"--but for my own peace of mind, especially as I go through treatment, it is imperative to me that you have as much as possible, whatever I can give you--should that day come too soon. And for every year that passes, I will celebrate with immense joy and gratitude for the milestones that we have shared, and smile in private victory as I move yet another item or letter into your "before" box.
This is much of what has captured my focus and kept me from completing draft posts that have been lingering untouched for the past few months. Oh, and compilation of a second bucket list*--one that I am planning for the stuff I want to do after I die. I promise to be back soon.
*item number 1 is to take dance lessons from Michael Jackson
Friday, November 27, 2009
Farewell, my friend
Dear Boy,
I’m smiling a little as I write this. “Meteora” is playing, loudly enough that I can hear the lyrics and cannot dismiss it merely as background noise. What a prophetic choice this turned out to be—do you remember my not knowing about any of the music in your car collection? That morning I was tired, slightly hung over, and a bit out of sorts, so rather than try to force my mind to work too hard deciding, I let my intuition guide my CD selection. In my world experience, which certainly does differ very much from yours, there is rarely any such thing as coincidence. Anyway, I liked this music that day (and BTW, I also liked riding in your little red race car with you exuding your boyishness) and now that I’m home and letting my mind wander, I like it even more.
So, just as you were feeling awkward the day I left, I too felt that way. It has taken me a few days to understand what I feel—and why—and I will try my best to articulate this to you as an attempt for more peaceful, easier feelings between us. In fact, it was the awkwardness, the uncertainty of resolution, that I didn’t want to leave behind.
There are some really important things I learned from you, which underlie my feelings, and which I tried in part to explain that morning when we were in the airport. I don’t know if this time it will be any clearer, but I will try.
About two months after my diagnosis, I felt the need to connect, to love and be loved, to find joy that might help me cope. Coming out of a long term abusive relationship had pretty much destroyed my self worth, and any remnant was quickly consumed shortly after starting my treatment. Losing my hair, battling my weight and the injustice of steroids, the near instantaneous drug-induced launch into menopause, and the prospect of losing my breasts (these are actually the least unpleasant side effects, but I think you get the idea)—all of this left me full of fear and distress (not to mention the angst over whether I will actually survive). I wanted nothing more than to crawl into the arms of a loved one and hear that no matter what, that these are silly, shallow things, and that me, my essence, my being are still here--beautiful and lovable as ever--and that in the end this will pass and it will all be ok.
When I realized this is what I most wanted, you were the one who came to my mind immediately (and I do mean immediately, even thought it had been 20+ years). You see, when we were younger, you were the one person who could make me feel safe, and make me feel like everything really was ok—my haven, of sorts. As I explained to you, my feelings for you were based on my love for you as a person—a love that was slow to develop, that grew as I learned more about you, and that to this day, was deeper than any romantic love I have ever experienced. It was not your appearance, but rather you, that was the basis for my attraction. After spending plenty of time chasing “cute” boys (and even eventually marrying one), I became even more certain that what I had felt for you all those years ago was true and meaningful and the best way to really love another person. I will never forget the evening we kissed in your bedroom on Elm St. For about a week or so prior, I walked around in a daze, thoroughly confused and trying to understand why the most handsome boy in the world had been there all along without my having seen you that way before. This realization was so startling that I am sure it caused the nervous jitters that led to my clumsiness when I leaned over to you for that first kiss.
So in my present state of mind, you were the obvious (and only) person to whom I would let myself go. In my mind, I remembered your love for me being based on me, with not much thought to the external. And maybe this was true then; even if not, I prefer not to know, as I would like to hold my idealized memory of us as I have kept it all these years. Regardless, I do understand that as adults we differ, and I respect the fact that what I more recently had wanted for us is not possible.
When I think about it, despite not getting all that I had wanted, I did find some of what I had been looking for. You held me up and led me through some of my darkest moments, and did give me hope that somehow, some way things will one day be ok. I now realize that I can carry this hope with me always—it need not necessarily be linked with you—and this is a remarkable gift. Thank you for bringing this to my life, and I will never forget that this is now a part of me.
So with this all said, I would like to leave the past in the past, and wish you well, my friend. I will always love you—that boy I knew so long ago—and am grateful for the many joys you have shared with me (and even for the not so enjoyable times, too, since they also were occasions to grow and to learn). No regrets on my end—I am happy to have tried, and content that I will no longer carry the question of “what if ?”. Perhaps one day we may resume a friendship, but for now, I think it best for both of us to let it be. I had told you a while back that I would never ask for more than you can give, and I mean it.
And remember, I do not believe in coincidence so if we happen to meet again, it will not be by my design and I will be yours with a smile…
Violet
I’m smiling a little as I write this. “Meteora” is playing, loudly enough that I can hear the lyrics and cannot dismiss it merely as background noise. What a prophetic choice this turned out to be—do you remember my not knowing about any of the music in your car collection? That morning I was tired, slightly hung over, and a bit out of sorts, so rather than try to force my mind to work too hard deciding, I let my intuition guide my CD selection. In my world experience, which certainly does differ very much from yours, there is rarely any such thing as coincidence. Anyway, I liked this music that day (and BTW, I also liked riding in your little red race car with you exuding your boyishness) and now that I’m home and letting my mind wander, I like it even more.
So, just as you were feeling awkward the day I left, I too felt that way. It has taken me a few days to understand what I feel—and why—and I will try my best to articulate this to you as an attempt for more peaceful, easier feelings between us. In fact, it was the awkwardness, the uncertainty of resolution, that I didn’t want to leave behind.
There are some really important things I learned from you, which underlie my feelings, and which I tried in part to explain that morning when we were in the airport. I don’t know if this time it will be any clearer, but I will try.
About two months after my diagnosis, I felt the need to connect, to love and be loved, to find joy that might help me cope. Coming out of a long term abusive relationship had pretty much destroyed my self worth, and any remnant was quickly consumed shortly after starting my treatment. Losing my hair, battling my weight and the injustice of steroids, the near instantaneous drug-induced launch into menopause, and the prospect of losing my breasts (these are actually the least unpleasant side effects, but I think you get the idea)—all of this left me full of fear and distress (not to mention the angst over whether I will actually survive). I wanted nothing more than to crawl into the arms of a loved one and hear that no matter what, that these are silly, shallow things, and that me, my essence, my being are still here--beautiful and lovable as ever--and that in the end this will pass and it will all be ok.
When I realized this is what I most wanted, you were the one who came to my mind immediately (and I do mean immediately, even thought it had been 20+ years). You see, when we were younger, you were the one person who could make me feel safe, and make me feel like everything really was ok—my haven, of sorts. As I explained to you, my feelings for you were based on my love for you as a person—a love that was slow to develop, that grew as I learned more about you, and that to this day, was deeper than any romantic love I have ever experienced. It was not your appearance, but rather you, that was the basis for my attraction. After spending plenty of time chasing “cute” boys (and even eventually marrying one), I became even more certain that what I had felt for you all those years ago was true and meaningful and the best way to really love another person. I will never forget the evening we kissed in your bedroom on Elm St. For about a week or so prior, I walked around in a daze, thoroughly confused and trying to understand why the most handsome boy in the world had been there all along without my having seen you that way before. This realization was so startling that I am sure it caused the nervous jitters that led to my clumsiness when I leaned over to you for that first kiss.
So in my present state of mind, you were the obvious (and only) person to whom I would let myself go. In my mind, I remembered your love for me being based on me, with not much thought to the external. And maybe this was true then; even if not, I prefer not to know, as I would like to hold my idealized memory of us as I have kept it all these years. Regardless, I do understand that as adults we differ, and I respect the fact that what I more recently had wanted for us is not possible.
When I think about it, despite not getting all that I had wanted, I did find some of what I had been looking for. You held me up and led me through some of my darkest moments, and did give me hope that somehow, some way things will one day be ok. I now realize that I can carry this hope with me always—it need not necessarily be linked with you—and this is a remarkable gift. Thank you for bringing this to my life, and I will never forget that this is now a part of me.
So with this all said, I would like to leave the past in the past, and wish you well, my friend. I will always love you—that boy I knew so long ago—and am grateful for the many joys you have shared with me (and even for the not so enjoyable times, too, since they also were occasions to grow and to learn). No regrets on my end—I am happy to have tried, and content that I will no longer carry the question of “what if ?”. Perhaps one day we may resume a friendship, but for now, I think it best for both of us to let it be. I had told you a while back that I would never ask for more than you can give, and I mean it.
And remember, I do not believe in coincidence so if we happen to meet again, it will not be by my design and I will be yours with a smile…
Violet
Friday, November 13, 2009
Just a quick one that I had to get out of my head and onto paper...
Why I run: to be in the moment, to feel alive, to feel strong, to feel beautiful, to feel connected with the world, to honor my friend, Josh, who was a runner (and may very well still be--who knows what they really do up there in heaven?), to express gratitude for a body that still (mostly) works, to experience the incredible endorphin rush, to smell the honeysuckle and jasmine that are still in bloom despite the calendar, to feel sun and rain and wind on my body, to smile at anonymous others who also like early mornings, to watch the sun rise (or set, depending on schedule), to be good to my body and my soul, to push myself beyond my limits, to set a positive example for my kids, to beat the crap out of cancer, to clear a space in my head so I can hear myself think, and sometimes also simply just to enjoy getting to the end, where occasionally there is a perfect bacon, egg, and cheddar biscuit made specially for me--a recently lapsed pescatarian!--by my favorite early morning place.
Thursday, October 22, 2009
The Red Devil Speaks The Truth
Chemo cycle 5--the switch from 4 rounds of Docetaxel ("T") to my first of 4 rounds of Adriamycin + Cyclophosphamide ("AC")--will remain etched in my memory as the one that brought me to my knees, the week that I could no longer take respite in my "informed denial", the week of relentless crying and pain and searching for strength, and the week that I finally, just finally, accepted the stark truth about where I am, which, as I later learned, was the long avoided but all too necessary prerequisite to grasping where it is that I want to go.
Adriamycin is termed "The Red Devil" by those in the know, due to its vibrant color, wicked toxicity--it must be administered manually by the infusion nurse in order to prevent even a microliter of caustic leakage outside of the vein--and of course, its malevolent side effects, which in my case, persisted for at least one full week post-treatment. What made it so difficult was that this was the first time I truly felt "sick" since the day of diagnosis. Of course, since beginning chemo, there has always been a bit of low-grade malaise, a feeling of things being just not quite right, a physical slowing down, difficulties with short-term memory and the frustration of not being able to reliably retrieve the "right" words on demand--but overall, nothing that kept me down for too long, nothing that I couldn't shake off and find a way around to keep going. This all changed, however, when I had my first dance with The Red Devil.
Looking back, I realize how well I set myself up for this, when just a few days prior to treatment, I decided for the first time to pick up the packet that had been sitting around since June and look at my mammogram, CT, and MRI films (which, scientist I am, from day one, I had demanded, err, I mean politely requested, copies of all "data"). So, there I was, alone in my office, staring reality in the face, transfixed by the areas of contrast on the images--which had they not been mine, would have been beautiful in that all too textbook perfect way--counting the positive nodes, comparing my interpretations with the pathology reports, and furiously crunching numbers on websites (e.g. cancermath.net, adjuvantonline.com) that are probably better left to use by oncologists rather than patients (but what the fuck, I know too much and even if I didn't you can be sure that my triple-type A, hypercompetitive, get-the-fuck-out-of-my-way-I'm-not-stopping-til-the-end self would be damn sure to obtain all necessary info).
So with this fresh in my mind, and several nights of sleep deprivation, plus pre-treatment anxiety over switching to harsher chemo meds, I ended up losing it, actually losing my freaking mind, from pretty much the moment I sat in my chair. The tears came hard and fast and I couldn't stop, never mind at the time even process why this was happening. I had never, never, not once cried in the infusion suite; in fact, so far I've been the poster child of hope and serenity, sailing through every fucking third Thursday when I take my usual seat, surrounded by the other "regulars" on the same treatment schedule. Others, whom I might add, always seem to be happy to see me, who seem to be cheered by my shirts and hats with their sassy, in-your-face commentary like "Cancer, you picked the wrong bitch!" or straighter to the point, "F*ck Cancer". But this day was different, off, and out of control. When I realized I couldn't stop the tears, I wanted nothing other than to hide, to crawl into the fetal position and stay there until it would pass like the nightmare it felt like it was. But how the hell to escape with a line, drip pole, and various other medical accoutrements? I did the next best thing, which was to gather it all together and wander the floor, finally settling on standing in a corner, where I had some degree of privacy. And there, dear reader, is where, thanks to my astute, compassionate, and Ativan-wielding nurse (what an angel!), I received my entire infusion, except for The Red Devil, which my nurse very kindly deferred until last, knowing that it would be some time before I could collect myself and crawl back into my chair. Standing there, hiding in the corner, I called Boy, and between tears and i.v. bag switches tendered unobtrusively by my angel-nurse, I tried to explain that I couldn't cope and asked that he talk to me about anything, anything at all, just help me get through this, distract me, please help me...
And he did. I cannot tell you a single word that he said that day, but really, the words were not the point. It was the strength and the caring in his voice that was important--at the moment, this is what kept me anchored to that spot long enough to complete most of my treatment and eventually, which even led me back to my chair for my final infusion.
And this is when I faced another of the many harsh realities of disease, which is that despite my best attempts at informed denial, cancer ultimately is a singular, lonely experience--no one can do anything at all to change it, or share the burden, or crawl into your mind or body and know for a second what it feels like, but this somehow doesn't change the fact that you still want to forge this impossible human connection, to seek understanding and solace that cannot be had. One of the things I figured out pretty early on is that going through this without a parent or a spouse is damn hard, and no matter how loving and dear to my heart are my friends, they simply cannot put their arms around me as a mother or a husband would and let me get lost in the (if only fleeting) belief that in the end, it will all be ok. Perhaps this is why, when we meet each time for the kid exchange, Jackass almost always tells me just "how strong and amazing I am". Well, although to him I say nothing, inside I do know that yes, I am that (and so much more), but this is a digression probably better left to discussion in another post.
So back to treatment day, somehow (I remember not), I made it out of there and back home. The first few days passed in a haze of nausea, sleep, and fearful depression. It was all I could do to move from my bed to the sofa. My depression was so severe that had it not been for my children, I might have seriously considered checking out. That is, I do know the thought occurred more than once, and I was still desperate for finding an escape. Running through all of this was the undeniable realization that I am sick, I have cancer, and I am afraid. It wasn't much of a stretch to think about the many losses, the slow stripping away of my life that had been happening so gradually, that I had failed to fully notice. I have never felt so beaten, so helpless, so unable to control. And let's face it, I am a controller, a person who always has a plan (which is always backed by plans "B" and "C" and usually even "D"--did I mention that I am a controller?). But this? There was no plan for this. I had exhausted every resource, and was too physically weak to formulate a plan for getting my ass off of the sofa, much less a plan to break free. So there I stayed for days, waiting in misery, waiting for it to pass, fixated on death, too scared to sleep because (at least in my mind) there was a real possibility of not waking back up.
I wish I had some good explanation for how my mind eventually kicked back into gear, but this too was a hazy event. I do recall a major shift toward the end of the week, when in a moment of clarity, I came to understand that no matter how important, no matter how much desire, no matter what, that there are some things that simply cannot be controlled. Of course, to most people this is quite obvious. But for me, I don't think I really accepted it til then. And I must say, it scared me silly. All of my life has revolved around the illusion of control. Of course, we are all dealt circumstances that defy control, but not me, oh no, I've always found my way around the seemingly impossible. I am a fighter, indefatigable and unstoppable. Determined and perseverant, full of guts and plans. If the first one fails, so be it. I will always find another path. And so far, so good. It hasn't been pretty nor straightforward, and certainly by no account has it ever been easy, but in the end, I have always found my way.
So in the quiet moment of this revelation, I did the only thing that made intuitive sense. I surrendered. And you know what? This led to the second epiphany, which is that although I couldn't control my disease, nor more to the point, the quantity of my days ahead, I nevertheless could control the quality of my days. Sigh. Another point that is so simple, so fucking trite, and so true--and yet, was so foolishly overlooked by myself til then.
Fast forward a couple more days ahead...I decided to make the proverbial bucket list. For those of you who have not tried to make such a list, a word of caution: it is hard, damn hard, to sit down, reject autopilot mode, and get real on what is meaningful in life. I started with some of the easier, more obvious goals, and found that if I make time to be quiet every few days, more answers come. I suppose it was the compilation of this list--which ironically, returned an acceptable level of control--that saved me. And of course, the loving friendships of those who all along were there that week, ready to listen, to do, to help in any way possible. My only regret is not having had the courage to let more of my friends know sooner the depth of darkness I had been in. I am finally starting to accept that even the strongest, most competent, skilled, and independent person has limits...and vulnerabilities...and can (and should) depend upon others. Given my past (thanks so much, Jackass and runners-up, my family of origin), I don't know if I ever really will be able to trust, but for now, I am surrounding myself with those I hold dearest, and am hopeful that one day experience may teach me otherwise.
And so, dear reader, I did get my ass off of the sofa, and decided from that moment on to live each day as authentically as possible (loosely translated as reconnecting with who I am and very consciously, very deliberately deciding how to spend my time). Made a visit to Boy, which accelerated progress in this direction beyond belief. I have since gone for AC cycle 2 and much to my surprise, have yet to feel any debilitating side effects, nor has any depression surfaced. I feel as though this time I am laughing in the face of The Devil, almost daring him, the son-of-a-bitch motherfucker, to head my way. I will never know how much time I have (and really, who among us does?), but things I do know for sure: I am now living life on my terms, with fearlessness, with no regret, and with as much contentment and peace as can possibly fill each day.
Oh, and this more recent cycle (three days ago) when I had that initial, ever so slight wave of nausea announcing the impending arrival of The Red Devil, I knew better. I went straight to item #1 on my bucket list (involves distance running), and headed for the gym. There, on the rooftop track--as I admired the gorgeous harbor side sunset and conversed with my friend Josh (who is in heaven and assures me that they truly are not ready for me any time soon)--I claimed control. This time, over the course of a 4-miler that flew by nearly effortlessly, I decided to reduce the Red Devil into sweat and spit that I ground into the asphalt with each stride, letting my thoughts unravel, cocooned in joyous gratitude for being on my way to that place where I finally, just finally, realized I am intended to go.
Adriamycin is termed "The Red Devil" by those in the know, due to its vibrant color, wicked toxicity--it must be administered manually by the infusion nurse in order to prevent even a microliter of caustic leakage outside of the vein--and of course, its malevolent side effects, which in my case, persisted for at least one full week post-treatment. What made it so difficult was that this was the first time I truly felt "sick" since the day of diagnosis. Of course, since beginning chemo, there has always been a bit of low-grade malaise, a feeling of things being just not quite right, a physical slowing down, difficulties with short-term memory and the frustration of not being able to reliably retrieve the "right" words on demand--but overall, nothing that kept me down for too long, nothing that I couldn't shake off and find a way around to keep going. This all changed, however, when I had my first dance with The Red Devil.
Looking back, I realize how well I set myself up for this, when just a few days prior to treatment, I decided for the first time to pick up the packet that had been sitting around since June and look at my mammogram, CT, and MRI films (which, scientist I am, from day one, I had demanded, err, I mean politely requested, copies of all "data"). So, there I was, alone in my office, staring reality in the face, transfixed by the areas of contrast on the images--which had they not been mine, would have been beautiful in that all too textbook perfect way--counting the positive nodes, comparing my interpretations with the pathology reports, and furiously crunching numbers on websites (e.g. cancermath.net, adjuvantonline.com) that are probably better left to use by oncologists rather than patients (but what the fuck, I know too much and even if I didn't you can be sure that my triple-type A, hypercompetitive, get-the-fuck-out-of-my-way-I'm-not-stopping-til-the-end self would be damn sure to obtain all necessary info).
So with this fresh in my mind, and several nights of sleep deprivation, plus pre-treatment anxiety over switching to harsher chemo meds, I ended up losing it, actually losing my freaking mind, from pretty much the moment I sat in my chair. The tears came hard and fast and I couldn't stop, never mind at the time even process why this was happening. I had never, never, not once cried in the infusion suite; in fact, so far I've been the poster child of hope and serenity, sailing through every fucking third Thursday when I take my usual seat, surrounded by the other "regulars" on the same treatment schedule. Others, whom I might add, always seem to be happy to see me, who seem to be cheered by my shirts and hats with their sassy, in-your-face commentary like "Cancer, you picked the wrong bitch!" or straighter to the point, "F*ck Cancer". But this day was different, off, and out of control. When I realized I couldn't stop the tears, I wanted nothing other than to hide, to crawl into the fetal position and stay there until it would pass like the nightmare it felt like it was. But how the hell to escape with a line, drip pole, and various other medical accoutrements? I did the next best thing, which was to gather it all together and wander the floor, finally settling on standing in a corner, where I had some degree of privacy. And there, dear reader, is where, thanks to my astute, compassionate, and Ativan-wielding nurse (what an angel!), I received my entire infusion, except for The Red Devil, which my nurse very kindly deferred until last, knowing that it would be some time before I could collect myself and crawl back into my chair. Standing there, hiding in the corner, I called Boy, and between tears and i.v. bag switches tendered unobtrusively by my angel-nurse, I tried to explain that I couldn't cope and asked that he talk to me about anything, anything at all, just help me get through this, distract me, please help me...
And he did. I cannot tell you a single word that he said that day, but really, the words were not the point. It was the strength and the caring in his voice that was important--at the moment, this is what kept me anchored to that spot long enough to complete most of my treatment and eventually, which even led me back to my chair for my final infusion.
And this is when I faced another of the many harsh realities of disease, which is that despite my best attempts at informed denial, cancer ultimately is a singular, lonely experience--no one can do anything at all to change it, or share the burden, or crawl into your mind or body and know for a second what it feels like, but this somehow doesn't change the fact that you still want to forge this impossible human connection, to seek understanding and solace that cannot be had. One of the things I figured out pretty early on is that going through this without a parent or a spouse is damn hard, and no matter how loving and dear to my heart are my friends, they simply cannot put their arms around me as a mother or a husband would and let me get lost in the (if only fleeting) belief that in the end, it will all be ok. Perhaps this is why, when we meet each time for the kid exchange, Jackass almost always tells me just "how strong and amazing I am". Well, although to him I say nothing, inside I do know that yes, I am that (and so much more), but this is a digression probably better left to discussion in another post.
So back to treatment day, somehow (I remember not), I made it out of there and back home. The first few days passed in a haze of nausea, sleep, and fearful depression. It was all I could do to move from my bed to the sofa. My depression was so severe that had it not been for my children, I might have seriously considered checking out. That is, I do know the thought occurred more than once, and I was still desperate for finding an escape. Running through all of this was the undeniable realization that I am sick, I have cancer, and I am afraid. It wasn't much of a stretch to think about the many losses, the slow stripping away of my life that had been happening so gradually, that I had failed to fully notice. I have never felt so beaten, so helpless, so unable to control. And let's face it, I am a controller, a person who always has a plan (which is always backed by plans "B" and "C" and usually even "D"--did I mention that I am a controller?). But this? There was no plan for this. I had exhausted every resource, and was too physically weak to formulate a plan for getting my ass off of the sofa, much less a plan to break free. So there I stayed for days, waiting in misery, waiting for it to pass, fixated on death, too scared to sleep because (at least in my mind) there was a real possibility of not waking back up.
I wish I had some good explanation for how my mind eventually kicked back into gear, but this too was a hazy event. I do recall a major shift toward the end of the week, when in a moment of clarity, I came to understand that no matter how important, no matter how much desire, no matter what, that there are some things that simply cannot be controlled. Of course, to most people this is quite obvious. But for me, I don't think I really accepted it til then. And I must say, it scared me silly. All of my life has revolved around the illusion of control. Of course, we are all dealt circumstances that defy control, but not me, oh no, I've always found my way around the seemingly impossible. I am a fighter, indefatigable and unstoppable. Determined and perseverant, full of guts and plans. If the first one fails, so be it. I will always find another path. And so far, so good. It hasn't been pretty nor straightforward, and certainly by no account has it ever been easy, but in the end, I have always found my way.
So in the quiet moment of this revelation, I did the only thing that made intuitive sense. I surrendered. And you know what? This led to the second epiphany, which is that although I couldn't control my disease, nor more to the point, the quantity of my days ahead, I nevertheless could control the quality of my days. Sigh. Another point that is so simple, so fucking trite, and so true--and yet, was so foolishly overlooked by myself til then.
Fast forward a couple more days ahead...I decided to make the proverbial bucket list. For those of you who have not tried to make such a list, a word of caution: it is hard, damn hard, to sit down, reject autopilot mode, and get real on what is meaningful in life. I started with some of the easier, more obvious goals, and found that if I make time to be quiet every few days, more answers come. I suppose it was the compilation of this list--which ironically, returned an acceptable level of control--that saved me. And of course, the loving friendships of those who all along were there that week, ready to listen, to do, to help in any way possible. My only regret is not having had the courage to let more of my friends know sooner the depth of darkness I had been in. I am finally starting to accept that even the strongest, most competent, skilled, and independent person has limits...and vulnerabilities...and can (and should) depend upon others. Given my past (thanks so much, Jackass and runners-up, my family of origin), I don't know if I ever really will be able to trust, but for now, I am surrounding myself with those I hold dearest, and am hopeful that one day experience may teach me otherwise.
And so, dear reader, I did get my ass off of the sofa, and decided from that moment on to live each day as authentically as possible (loosely translated as reconnecting with who I am and very consciously, very deliberately deciding how to spend my time). Made a visit to Boy, which accelerated progress in this direction beyond belief. I have since gone for AC cycle 2 and much to my surprise, have yet to feel any debilitating side effects, nor has any depression surfaced. I feel as though this time I am laughing in the face of The Devil, almost daring him, the son-of-a-bitch motherfucker, to head my way. I will never know how much time I have (and really, who among us does?), but things I do know for sure: I am now living life on my terms, with fearlessness, with no regret, and with as much contentment and peace as can possibly fill each day.
Oh, and this more recent cycle (three days ago) when I had that initial, ever so slight wave of nausea announcing the impending arrival of The Red Devil, I knew better. I went straight to item #1 on my bucket list (involves distance running), and headed for the gym. There, on the rooftop track--as I admired the gorgeous harbor side sunset and conversed with my friend Josh (who is in heaven and assures me that they truly are not ready for me any time soon)--I claimed control. This time, over the course of a 4-miler that flew by nearly effortlessly, I decided to reduce the Red Devil into sweat and spit that I ground into the asphalt with each stride, letting my thoughts unravel, cocooned in joyous gratitude for being on my way to that place where I finally, just finally, realized I am intended to go.
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