I have this big huge fantabulous Thanksgiving party every year; it’s always on the weekend before thanksgiving. We call it our Charlie Brown Thanksgiving Party. This is a party for all the people we hang with every day, who are mostly not our family by blood, but who are our family in more ways than we could ever know; the neighbors and friends and teachers who make our lives so wonderful and less as old Chuck himself would say, Rats. The party has grown bigger and more crazy every year, both in numbers and what we do for fun. We now have an industrial cotton candy machine, a chocolate fondue fountain, and pilgrim hats for all. The grande finale after dinner is when the adults all get slingshots and there is a marshmallow shoot off the deck into the kid’s mouths as they run to catch them on the ground below. Inevitably about ten hours and seven mimosa’s into the day, someone loudly announces, “This is ten times better than Thanksgiving with my family!” But for real, these peeps are my family; the folks who have encircled us and are the village it took to get us three through soo much these last ten years. And I love them all bunches. It is indeed one of the best days of the year here at the ranch.
Anyway, several years back, late in the day at the party I was feeling all warm and fuzzy and mimosa’y, and I found myself looking around and taking it all in; thinking good thoughts about everyone in my house and considering how lucky I was to have so many wonderful people in me and the kiddo’s lives. For some reason as I looked around that day, it suddenly dawned on me that on me there were 7, count ‘em 7 breast cancer survivors (and one leukemia survivor) in my house at one time. As I took inventory of these women, I realized that with none of them did I become friends because of cancer. Some of the friendships were years old before cancer found any of us, some of the friendships were found after cancer, and yes while all of the friendships deepened because of cancer, none existed because of cancer.
I will admit I kinda got the willies that six of these women lived within a mile radius of my house and thus, as we all now know and love about me, I briefly ruminated about a hot spot in our neighborhood and my tap water, but another mimosa succesfully lassoed me back into the corral. And honest, doing the math, I realized the statistic was correct, about 1 in 8 in the world, about 1 in 8 in the neighborhood, about 1 in 8 at the party. That sucks.
I so wanted to take a picture of us seven, and then take one every year after with the caption that said, “We’re ll here cause we’re not all there.” I imagined having a festive toast to us each year when the picture was made. But I hesitated. First, I respected that the others may not want to be identified publicly as breast cancer survivors, and second, I did not want the day to become about cancer. But honest, I was most afraid of the year when we would not all be there and it would be sad, to have a picture with one missing from this magnificent seven.
The next day, I chewed on this experience along with some leftover fondue chocolate dipped blue cotton candy, and arrived at the notion that for none of us was the experience of breast cancer the same. That even if I had taken the picture, and we were linked by a frame of that one common diagnosis denominator, nothing more than the wood around that picture made us equal or inclusive.
Assumptions about breast cancer and how cancer patients must act or look is something I have touched on in both the Swimmers and Pink Dress blogs a while back. But those were more discussions of how treatment varies from woman to woman, and we must realize too that the emotional experience too is so vast and even more varied for each of us cancer chicks. There is such an enormous spectrum of emotional responses to breast cancer, in part because we all are built differently, in part because we do undergo different treatments, and in part because we come from different places in life and have different places still to go when breast cancer finds us.
Experiencing a trauma like cancer is like firing a shotgun. We really don’t know where the spray will end up, what little nooks and crannies in our brain the shot will find to roll it’s tiny pebbles into. We never know just what future jar to our system, what bump further down the road in life, will cause a pellet, long hidden in a dark corner of our noggin, to come rolling back out. We don’t know which seemingly tiny pellet will wound us almost fatally when it hits a thin part of our psyche, or how it will happen that a full on blast in one area barely will barely nudge us with its impact.
When I testify in court on behalf of abused kids, I am always asked about typical patterns of how abused and traumatized kids act. People want to believe that we will be able to tell if a child is abused based on the presence of behavioral changes. Indeed my greatest task in testifying is in educating juries that the absence of behavioral changes does not rule it out the fact that abuse occurred. I spend time explaining that there are no typical reactions, no typical “patterns,” and that less overt behavioral change does not always mean less damage internally/emotionally to the child. In fact, how these kids fair emotionally after abuse is a function of a number of factors that all vary from kid to kid. How old they were at the time of abuse, what exactly happened to them, how many times something happened, if it was painful, the relationship to the perpetrator, if they had support and were believed. Finally the wildcard, resiliency also plays into a child’s emotional recovery. Kids can often show huge outward signs of the trauma or none at all; what we see or don’t see is a function of all these factors. Further, trauma visits us again emotionally at different ages, in that it means something different to you to have an abuse history at 15 than it does at 25.
Breast cancer is trauma, and all of the above holds true to it.
I so get that there is no one way to experience trauma and loss, so when I write my blogs, I often fret about generalizing my experience to other women’s experiences. As a psychologist and a breast cancer survivor, I know full well that there is no one breast cancer. Treatment is as varied as the women in the room. And there is no one emotional response to breast cancer either; every woman suffers different losses from cancer.
First just look at the varied treatment my friends had:
1) A mastectomy, nodes removed, nothing else done
2) A double, 8 weeks of chemo reconstruction with nipples done
3) A double, chemo reconstruction without nipples done
4) Chemo and radiation and mastectomy, reconstruction done five years later
5) A lumpectomy, then a double then chemo, then radiation
6) Chemo, lumpectomy, radiation, no reconstruction
7) Mastectomy, no chemo no radiation and reconstruction right away.
8) A double, chemo, radiation and full reconstruction 5 years later.
Treatment alone separates all of us based on what kind of personal hell we went through, and the trajectory of our physical recovery alone being so varied. When you throw into the mix how varied the emotional experience of breast cancer is for each of us, you will wind up with the same truth as with child abuse; there is no pattern of behavior, there is no one way to act, there is no standard emotional response. Ever.
It is why it is personally frustrating for us when people try to compare us to another woman with breast cancer and how she is doing emotionally/physically.There are so many factors that play into to how we will recover and heal both physically and emotionally from breast cancer; so many variables which dictate the ambiguous losses we each may individually experience, and how profoundly those losses are felt.
Physical treatment alone can take over a year for some, or be over in the flash of a mastectomy for others. Regardless of how long treatment takes, well-meaning people will likely say to us, “Treatment is done, be happy, get on with it, you survived!” We may even tell ourselves that, puzzling why, if we survived cancer, we are so blue. Yet, the place where treatment ends is only the beginning of the road for emotional assessment and recovery. It is hard to conduct emotional tasks when you have a chemo line attached, or can’t sleep with the pain of tissue expanders. As I have said before, it is when all that noise and distraction of the physical stuff stops, when the tornado has passed per se that we go back and assess the emotional damage and begin the cleanup.
Every woman is different. Every woman will experience different losses in cancer, and every woman will feel the impact of those losses differently. Simply, every person on the face of this planet grieves differently; some are out loud weepers and some are poker faced. The grief that we experience in breast cancer relates to both tangible and intangible losses. The more ambiguous losses are often infinitely harder to navigate, to assess, to cleanup; they are the hardest to get our hands around and mourn. Ambiguous losses are more wispy than the loss of a breast. And indeed, the same exact loss no matter what it is, has the abilty to weigh heavily on one woman, but be just a glancing blow to another. We will all have different things to grieve, and different ways to grieve.
People imagine we are just grieving our breasts, but I think every cancer chick will agree with me that it’s the ambiguous losses that will tangle us up the most. Grieving what was to be is sometimes harder than grieving what was.
Where you were, who you were, what you were, how you were, and when you were in life when cancer came a knockin’ will dictate not only where your emotional journey begins, but where it will take you and where it will end. These are the places where intangible losses are found.
Where you are in life is perhaps the biggest variant to the losses you will experience. Are you 20 or 40 or 60 or 80? When we are diagnosed young, we grieve the loss of life as we dreamed it would be. The idea that a long life may not be yours, that you may not see parenthood, or marriage, or a finished degree. That you may not see retirement or grandchildren ever. There is a whole life ahead of you that you imagined to be that is lost, and that needs to be grieved; marriage and babies and career and retirement; all of it must be reassessed and reconfigured and possibly grieved as lost.
Cancer in midlife brings it own sets of concerns as you are sometimes a parent, sometimes have an established career. Another age factor that is so often overlooked is if you have gone through menopause or not, because if you have not, you will with chemo. Menopause is hell both emotionally and physically in just normal life, but being brought on with chemo, when you are dealing with a bazillion other side effects and worries, it’s infinitely worse. Breast cancer even very late in life, say in your eighties has it’s own losses. Sometimes it’s not validated by others as horrific as cancer at 20. People assume that cancer is what happens when you get old, and they are often puzzled by your grief, not realizing that your game plan included making it to 100 and Willard Scott wishing you a Happy Birthday.
When cancer finds in your life dictates what it can steal from you; what grief tasks will be ahead of you and what future you had ahead of you to grieve as lost. The loss of possible babies, the evaporation of the arrogance of youth and the loss of the yawning stretch of life we saw ahead when we believed that we would live forever, all gone. We grieve bikinis and we grieve breastfeeding. We grieve our bodies working in predictable ways and we grieve retirement. We grieve what was to be, what we hoped for, what we imagined, and this is huge and complicated grief. Vanished dreams are huge losses to grieve.
Your status, married, divorced, single, really your support system that you have when cancer comes is also a variant in your emotional outcome, affecting not only how difficult cancer is for us to go through, but also again, what we will have to grieve. This may not sound big but it is, trust me. A girlfriend and I both went through cancer alone, just after a crappy divorce and it is very, very painful to sit at chemo alone and watch attentive husbands dote on their wives. It is scary to think about dying alone and contend with the loss of the dream of finding a happily ever after.
And for those who are married, the status of the marriage is important emotionally. I have seen women go through breast cancer with husbands who are princes, and husbands who are just toads who should have been kissed and left in the bog long ago. I have seen marriages where guy is absolute toad at home but where he likes to present himself as the Prince of Meeting his Breast Cancer Stricken Wife’s Every Whim in public. (I hate that guy BTW and more later on that.) I have seen many a relationship/marriage end with the diagnosis, with a guy saying he just couldn’t handle cancer or worse, a husband announcing an affair (think of the biggest toad in the bog, Mr. Edwards.)
And then there is there is the grief that is tangled up in the dreams of future prospects of dating and marriage after cancer for us single girls. A woman in a happy marriage has a wee bit less to navigate emotionally than a woman who has dating ahead of her in this department. And too, a single woman with a mastectomy that has yet to be reconstructed may find future dating a bit more worrisome than a woman who had reconstruction. We grieve the freedom of dating without worry, without this heavy thing coming with us into a new relationship. Suffice it to say, the prospect of dating and being naked with a new person when you have half a breast or no breast or no nipples is let’s just say, a tad daunting. A young woman with cancer must now find a special guy who will understand her inability to perhaps become pregnant or breastfeed. And an older single chick like me must decide when in the dating game, you let on your history and broach the fact that all that glitters in a Victoria’s Secret Miracle Bra isn’t gold. And less we forget, we carry this bag of emotional stuff in our heads that a future partner must be willing to take on. (Thank you sweet man, you know who you are.)
I have seen single women with no support systems and single women with a world of support. Women isolated in big cities and women like me, with the most awesome village on their street, or with an awesome church network, club network. Support systems are huge predictors of emotional outcomes for many.
Who you are when cancer finds you dictates who you will be after cancer. This has to do with where you draw your identity from, as from your career, as an athlete as an actress, as a wife. Some chicks were athletes before cancer, they were swimmers and runners and tennis players, and cancer does have the potential to steal that identity and it must be grieved if it does. Even with me, a generally average fit person, I still struggle with and grieve what cancer took in terms of my ability for my arms to look healthy, for my weight to regulate after years of steroids, for the residual pain that reminds me any time I exercise that cancer nabbed a bunch of lymph nodes from my armpit. I still fret with swimsuits. A double mastectomy can cause irreparable harm to a professional athlete or even to a recreational tennis player. The lesson here to mind is that depending who you are, it is a different ball of wax; what cancer can do and steal, for each woman. Loss of identity is a huge intangible loss.
Who are you? Will cancer steal that identity? Are you still in school, finished or in an established in a career? Breast cancer wreaks havoc on concentration presenting trouble for women in school or in certain careers. Many women face the fear of being hired ever again, with a history of breast cancer looming on health insurance and many remain trapped in a bad career by insurance. Being unemployed during cancer brings on grief of its own, fear of ever being hired, fear of medical bills mounting, fear of how to find a job bald. Many women must work full-time through cancer when they don’t want to, many have to work just to keep benefits. Cancer controls the identity here not you. A woman I know who is a lawyer had a very tough go of it, worrying about a big trial on top of cancer. For me, being told I could not work during treatment was devastating, as I draw so much of my identity and feel good from work.
Loss of security and identity is a huge intangible loss. Like it or not, money issues weigh heavily on our mental health in cancer. We may grieve how cancer stole our college funds for our kids, or our vacation away, or just our sense that we were financially secure. There is such grief in worrying about putting food on the table when you are sick. You may feel such loss at having to move, or give up a job, or ask to borrow money.
Are you a parent? Single parent or married parent? How old are your kids? For me, the terror and grief ranged from the logistical, such as how will I get them up, ready and driven to school on days I am really sick and who will cook dinner on vomit days. And it ranged to the nurturing, as in who will tend to them when they are sick and I have 3 white blood cells to my name? Do you have teenagers who can help out and conversely can look on the internet for propaganda to scare the crap out of them secretly about how you will die, or do you have toddlers who so much more physical care. The grief runs to the larger scale, of how do I contend with my kids not recognizing me bald, with their fears, with their worries? How do you hug a kid who is afraid of how you look? And then there is the biggie, the anticipatory grief when we wonder what will become of them if we die, and we wrestle with the potential loss that we maybe will never be able to pick out a wedding dress with our daughter, or will never see our grandchildren.
Family history. Are you a breast cancer legacy family who, like Christina Applegate, kinda saw it coming and maybe even expected it? Do you have examples of survival in your family or did it take someone out? Or are you someone for whom cancer was a complete shot in the dark blindsiding you? Sometimes, a bit of anticipatory grief has been completed, long before diagnosis for some women.
How you identified yourself prior to cancer in terms of self-image, body image and sexuality is huge. Were you always the girl with the boobs, or never the girl with the boobs? Many women have a great deal of sexual and self-identity attached to their breasts, and for them, the loss is even more devastating. Some women already have difficulty with sex and nudity and cancer just compounds it. Were you a woman who was already uncomfortable being naked during sex? Were you a woman who loved her body or who one who already had a conflict with her body? I have one friend who says to this day 6 years later, her husband has never seen the reconstructed breast. I have one who did not get her nipples done and talks of never having sex without wearing a camisole. I have another who has had several boyfriends and has had no problem at all getting naked since her double was done. Some women come out very very happy with their new breasts and others, no so much. All this will affect what is an enormous part of our emotional life, our sexual life, in what we have to grieve and navigate emotionally.
Are you grieving anything else besides cancer at the time? An empty nester, a death of a spouse, a divorce, a child leaving home, a parent dying? Is your grief compounded? Are you a resilient person? Are you a pop back up like a bobo doll kinda girl, or one who tends toward her wounds taking extra long to heal? Is this your first bout with cancer or second? Are you a tough it out chick or one prone to depression? Are you in a culture that even allows grief?
See, all these variants can become so tangled up in just one simple decision, say reconstruction for me. In making that one decision, the factors include how much I am grieving the loss of my breast and why, how much of my identity sexually is attached to my breast, how will I afford the surgery and what new trauma it will bring, if I can afford to take off work, worries about who will take care of me and my kids in recovery, concern with how will I work with being up at night with the pain of tissue expanders, wonderings about what future relationships will be like sexually if I don’t do it, and wondering if I will I ever feel ok in a swimsuit again if I don’t. And no other woman will answer all of these questions that same way, in the same combo that I would. And no other woman will grieve the same that I do or find important what I do.
The Thanksgiving party is always a pot luck. Every plate made at my party is overflowing, yet filled differently based on the person. Breast cancer, and all the trimmings is the same way….that is, depending on YOU, who you are and how you are built, where you have been, where you are and where you want to go, it will show up differently on your plate; the experience will heap different things on your plate. Breast cancer will steal different things from every woman, but often the greates losses are things we don’t readily see on our plate, the ambiguous things.
Thank God we are here. I wish I could tell you that the grief of cancer is a predictable course. But it is different for each of us. What I can tell you is this. Be mindful of who you are, and be mindful of what YOU have lost. Shoulds and shouldn’ts are bullshit.
Simply take this food I offer for thought in dissecting your own experience, in giving yourself permission to grieve the intangible and ambiguous. Accept my permission to tell yourself and anyone else around you who doesn’t get it that you aren’t crazy or malingering. You are grieving things you never knew you lost.
We are indeed all here cause we’re are not all there, but what is not all there is so much more than meets the eye, and is something a snapshot cannot capture.
Sometimes, what is not there is easier to grieve than what was to be there.
The loss of what was to be is sometimes harder to grieve than what was.