It was a lively group meeting for dinner. Me, my good friend Anne and five lively southern belles who had come to visit the beach.
I met three of them in October when they were visiting from Mississippi and Texas. I formed a strong bond with one of them.
She was a classic beauty, much like my mother, kind of a Barbara Stanwick stunning. She also had to her credit birthing 8 children, being one of 13 herself and having a hand in raising some of them. Our walk on the beach last fall felt much like the mother I never had was with me. Whatever made me is generous that way. Sending custom made experiences to me, when I am not even looking. That is my proof that while I times I feel alone, in fact, I am not.
Two more Steel Magnolias had joined the original three here at the Emerald Coast of Florida. All but one had been cheerleaders together in high school fifty plus years prior and they were having a girl time get together at the beach.
We met at a Thai restaurant. It is one of those places where you take off your shoes and step down to be seated around the table in kind of a nook. There are two steps up. That is where you sit to remove your shoes. There is a bamboo wall dividing the sunken booth from the one next door, providing a private dining experience. You can’t see other customers and they can’t see you, unless they are passing by to go to the bathroom. The table is down and in the middle, surrounded by black leather cushion seats. No direct back support, but there are cushions along the back side, so I always park myself there.
The seven of us took up most of the black cushioned area which felt cozy, or at least it had the potential to.
But this dinner, one that I initiated wanting the benefit of social engagement and what promised to be a lively experience with delicious food and spirited women was none of that for me. The experience was there to be had. But I was not there. My body was, but I was somewhere else. I was disassociating. Leaving my body to avoid discomfort. I knew it, too and I made great efforts to be fully present, but with minimal success.
It was like watching a television show. Something I have done lately to numb myself. And I did that in person last night. I may as well have been in a bubble. I was watching them, but I was avoiding eye contact when I did try to engage. And was acting a part really because as much as I desired to be fully present, I could not be. It was concerning.
Something had happened between me and the woman I had felt a maternal bond with. Something that she said to me the day before that triggered my experience with my mother and how she abandoned me while showing the world actions of a born again Christian.
My mother did some good things in the community under the umbrella of her churches outreach ministries, no doubt. She mentored a troubled teen, helping her find herself. She volunteered at a low income grade school, mentoring second graders. But what she didn’t do during that time, was be a mother to a daughter who needed help when the birth of her baby resulted in a disabling postpartum depression. For the first year of my daughter’s life, the first three weeks of which required us to be separated while I was hospitalized, I needed support to take care of me and my daughter. It was a rough year. And my mother was rarely there to help, keeping her schedule of ministering to others in the name of Jesus. The message I got was my needs for my mother were not as important as those of other families. Also, that God somehow supported this because what she did, was in God’s name. I am not saying that is what she said. I am saying that is what I internalized deep in my bones.
I have compassion for my mom. I think had she known better, she may have done better. But if my daughter were to go through what I did, I would make supporting her and her baby a priority and the fact that my mother did not do that for me while busy in the community ministry, frankly fucked up my head around God and faith and not feeling worthy of my mother’s love.
Back at dinner, we did the lean in funny group selfies and when I looked at the images that were caught of my facial expressions, I could see my disturbance in several. Almost a scowl. Not anger, but angst. Then, as I have been well practiced at doing most of my life, in the next few shots, I poured it on and smiled and laughed and those images were there too. But I know that the angst on my face was the only honest expression I had.
My friend Anne knows me well. She was seated diagonally from me, but it felt like a mile. When it is just the two of us, I feel safe to just be how I am and not feel like I have to be the fun one. A role I have taken on to survive at times or compensate for feeling insecure at others. We do play well at the beach, our inner kids one upping each other in imagination, but only recently I have let her into my heart, sharing some of my pain and trauma for which I seek relief.
That is a hard practice for me. To allow someone in to see my hurting, vulnerable side. The part of me that I have so much trouble embracing. The parts that feel unworthy of others attention, nevermind my own at times. Consequently, eye contact with Anne was uncomfortable too. I am seeing all of this upon reflection. In the moment, I was just floating around in my little invisible bubble, poking out of it now and then with a funny story or anecdote. It was exhausting. I struggled to listen to the conversation. I may have well been in my car in the parking lot.
In the days, weeks, months, years leading up to this dinner, trauma had been a main course. I hate that word, by the way. Trauma. It is overused, misused, misunderstood. Let me put it this way. Some shit went down in my childhood which formed me and which dictated my choices in adulthood for relationships and support people which only reenacted that shit from childhood. There were also some external traumas. Death of my father when I was 7, loss of my family as I knew it right after, breast cancer, sudden end of my 24 year marriage, just to name a few.
My body is screaming for attention. My complaints could wear the title of Fibromyalgia if I went to the right practitioner. I sometimes hurt all over, not just in my back or neck, but my legs and hands and feet too. Lupus is on the radar, according to my last blood work. My painful hips, have been charted as hip bursitis, a title, by the way, that I have renounced in the name of yoga and walking.
I am listening to the book, The Body Keeps Score, a book written by Dr. Bessel Van Der Kolk to show the correlation between the mind and brain and body in terms of its response to traumatic events. I am only at the beginning, but already this book has informed me that what I experience in the ways of body pain are symptoms of unhealed trauma that have set up camp all over my body. It is all just my body asking for attention to a problem that goes way deeper than the symptom of pain.
My breast cancer was born in the terror of the week of September 11th, as I lived in the trauma of that attack in my home for a week solid, marinating in the news and images, somehow relating on a visceral level. The tumor in my breast found in April 2002, was measured for how fast it had grown and based on the size, my intuition tells me that it got its start that week.
I have alot of therapy under my belt. Forty plus years of seeking relief or guidance for a world I was not properly prepared to navigate growing up. But none of that addressed the trauma beyond identifying and understanding what I experienced and on some level re-experience when things happen in my current day life to trigger the hypervigilence in my body and brain. Most of those years, practitioners were treating symptoms. Depression? Most likely largely grief at much loss, was and still is medicated. Anxiety? Same. Sleep? I don’t get any without medication. For now.
I am seeking help and have my first appointment for somatic therapy, https://therapy-mn.com/somatic-experiencing-ptsd/ to begin next week. I visited trauma work with a safe and compassionate practitioner last year at this time while I was still in Tulsa. One session in, and there was a rage in me that ran deep. I told myself I could not afford it, discussing it with the therapist. “Trauma is tenacious.” Her words to me, which I heard to say, “this shit is not going to get any relief until I get specific help to do the work.” My rationale at the time was, “I can’t afford this. I have other expenses and bills to pay.” I knew then that I would need to do this work at some point if I were to salvage whatever is left of my life in order to be present to it and to me. As it is, I struggle with disassociating on a regular basis, making jokes that St. Anthony, the patron saint of lost things is my lover because I am always going to him to find my keys, my glasses, my wallet, my car. But it is not funny. Because I also lose my focus in my car. When I text and drive. When I drive while too tired to safely do so. I have been labelled with ADD too. And that accurately describes my struggle. But again, it is but a symptom, I believe of an underlying, untreated, unhealed problem. Trauma.
About a year and a half ago, I had such concern for my concentration and how it impedes my function that I had a thorough battery of two days worth with a neuropsychologist to look under the hood in my brain. My brain is fine. My score was off the chart for anxiety, however. Hypervigilence. In every fiber of my being. Fibermyvigilence.
When I moved from Oklahoma to Florida last fall, I knew that I would need to do this work if I was going to have relief and healing. So I told myself that after the darkness of winter, a time when I go dormant, (called by others seasonal affective depressive disorder,) I would get myself the help I need. And I am doing that. The rationale of not being able to afford it comes up in my ego, Elvira. She is so afraid I will send her packing. I won’t. But she cannot run this show anymore. I want and need more from myself than what she alone can provide. And as far as affording the therapy? Well, as a person who has a history of overspending, who has some recovery there that recent bouts of swimwear and fancy shoes have dented, I don’t see how I can afford not to.
I have also begun to listen to Thich Nhat Hahn, a Vietnamese Buddhist monk. (I have a friend who calls him This and That.) His teachings are famous in recovery circles that I have been in. For me, he is a warm fuzzy messenger of self love and self care. This is just one of his talks about how to deal with strong emotions. In it, he talks frankly of suicide. https://www.youtube.com/watch?v=WOn-mOCKzrY&t=58s His teachings, gentle and simple work for me as I am new to the practice of loving and being a nurturing parent to my inner child.
So my spiritual support is all in place for me to do the work now. And I believe it is the timing that the universe dictated. Right on schedule. I have a support network of fellow travelers who are also recovering from childhood trauma that impedes their adult lives, an inner child mediation that feeds my soul and esteem, https://www.youtube.com/watch?v=o3-haY5mbyg yoga and the beach, also good for my body and soul and now the trauma therapist to hold my hand for the next level of healing. I am grateful. I am willing and I am ready.
If this brings you any comfort or if you read this and relate on any level, I’d love to hear from you here or in the comments. It is my intention as I share here on my blog, to hopefully benefit others by so doing.
One last thing. Don’t give up. I have thought about it many times. And I am so glad that I didn’t.
I got high yesterday. It had been a tough day emotionally, one in a series of many. I did not plan it. I started my day feeling emotionally spent from having made some tough decisions. The kind that sap so much mental energy, I think I can’t move my body.
I used to misinterpret those kinds of days, when I was emotionally fried to mean I could not do anything physical. I would intend to do 3 exercise classes in a week, but then at the end of a workday from a dissatisfying job, I would tell myself I can’t exercise, not realizing that that was a lie. In fact, exercise was not only possible then, but I did have the physical energy, I just didn’t know it. That was 30 years ago. Now, I know that mental fatigue does not mean that my body cannot move. I am fully committed to walking 2 to 4 miles most days, in spite of the heavy emotional ones that leave my brain feeling like mashed potatoes.And I am always better for getting out there and moving my body.
After a morning phone call with a friend where I could hear exhausted chatter coming out of me, all the while my gut was saying “You are too tired to talk. You need to rest,” I caught myself. I told my friend I felt like I sounded like what tired animals look like when they pace aimlessly around in circles and she said she could hear that in my words. I hung up, revised my ambitious plan for the day to look more like gentle self care and self compassion. After all, I had just come out of several weeks of trolling online dating for hours on end. No wonder I felt so wiped out. I was.
I needed to go to the grocery store, and the beach was out because of rain, so I saw an opportunity to go get some paint for a custom order rocker I have to paint. And I wanted to attend a new support group online at six thirty in the evening. Perfect! A couple of errands, cook myself dinner, support group, a little TV, then bed.
But that is not what happened. I got through the first errand picking out some yummy colors for a rocker I was painting for a client in Memphis when an idea came out of nowhere. “Let’s go look at shoes!” That sounds innocent enough. My rationale was that I do need shoes for walking in the summer, as well as some inserts in my current walking shoes. But the energy was not there. And you don’t have the full context.
You see, I have a history of shopping and overspending to avoid dealing with reality. It goes hand in hand with an eating disorder and alcoholism, if you want to categorize it by addiction or disorder. Along with that, my most recent addiction of online dating to excess, you now have a better picture of my challenges. Or, the main moles whose heads pop up in my game of Whac-A-Mole.
Alcohol has been out of the picture for 36 years. But you can’t not eat and you can’t not spend and you can’t not have relationships with people, so those have all been to excess for me in the past thirty some years, talking turns rearing their furry little heads. The food has had a tremendous amount of work put in by me and that disordered eating, which has twice required treatment is most of the time in remission. The relationship/aka online dating obsession has only been a thing since my divorce five years ago, after a 26 year loveless marriage so that is a new mole, relatively speaking and as my previous story indicates, I have disconnected the power to that little furry guy just this week.
My mother was in the fashion industry. She worked for the chic women’s magazine Women’s Wear Daily in New York City, right out of college with her journalism degree in the 1940’s. Her last business which closed in the 90’s was a high end dress shop, serving the wives of wealthy monied oil barons and the old money of Tulsa, Oklahoma. She did fashion shows on private jets. Served wine in the sitting area outside of the dressing rooms. All of the nurturing that she had to offer went to her business. None of it came home to me. And many nights, neither did she.
My brother and sister were adults out on their own. I was in high school and I was home alone. Alot. My mother had her own problems, namely acting out promiscuously with married men and bar hopping to get attention. It was very important to her that she be seen. She had gotten used to that when she met and married my father in New York City, where he was a dashing handsome celebrity in show business. They were a beautiful couple, hob nobbing with the show business elite of radio and television and music in Manhattan in the 1950’s, so after my father’s untimely death in 1967 at the age of 42, her party, the one with the silver spoon and the Stork Club and Big Apple came to a screeching halt.
Her store was the only place I really saw her much. It was clothing for women, which did not fit my adolescent form in high school, but she would not buy me much from stores more appropriate for me, so I was stuck with pants that pooched where I didn’t have hips because that was what I got.
Over the years, I developed her love for clothing and fashion and pattern and texture and color, and I learned a lot from that exposure. In some weird way, the clothes I got from my mom, were a form of love in my experience, so it makes sense now as I write this that I would become a compulsive shopper, as I was groomed for it really when that actually WAS love from a mother who did a poor job of giving it otherwise.
I walked into the shoe store with the best intentions of just trying on some shoes for beach walking and getting some inserts for my sneakers. It was dark and rainy outside and I had just enough time for this quick stop before heading to the grocery store and then home. This is where the high comes in. Most of the time, when I go into ANY retail store, I pray this prayer, “God, please make this a sober shopping experience.” And for good reason. Because for me to walk into a store full of pretty things with a 1,000 open line of credit on a card and not say a prayer for protection, I can get and have gotten into some serious debt over that. Especially when I have been upset or emotional. And I practice what I call sober spending as a rule as a means to do just that. Be sober with money. Some people would call it being financially responsible. That works for them. For me, it’s sober spending.
Before I share what went down yesterday, I’ll share another episode of, let’s just say, me getting shitfaced on shopping at Chico’s. Chico’s is a women’s fashion store, similar to my mom’s and was at one time my favorite place to go for clothes. On this occasion, I was freshly wounded from the surprise ending of my 26 year marriage one night in my living room some weeks prior. I had dropped my daughter off to go to a concert in Oklahoma City and decided I would take myself out to dinner and shopping while I waited. And when I say my life blew up, I mean it. I thought my then husband and I were working things out when all in one 24 hour period, I learned that no only had he relapsed in his alcoholism, but he had been paying for sex and acting out in a full blown sex addiction, spending tens of thousands of dollars in the process for at least 6 years right under my nose, which had been up in the cloud of denial for that entire time. So, needless to say, I was hurt, and perhaps fit the description of a woman scorned.
So as I am putting my pile of merchandise on the counter that had to be 14 items stacked, I am vomiting this all to the woman ringing me up. Just like she were a bartender pouring me shots that just happened to come on plastic hangers.
“And then he…” me having inappropriate oversharing “this happened to me” tourettes all over her because that was the best I could do at the moment. Thing is, Chicos hires women my age for part-time work, so she was commiserating with me that she had had the same experience and the woman in line by me, who may have well been swivelling on top of a red leather trimmed in chrome bar stool said this to me. “You know what some women in your situation do, they go out and buy a ‘Fuck You’ Lexus.” Believe me, had that been an option, I would have. But that money was gone, so clothes it was.
Yesterday was not much different in that I was emotionally spent, for different reasons, but still raw and hurting. I walked into this brand new store, full of fabulous shoes, handbags, beach apparel, well lit and displayed, literally out of the dark of the storm into the light, and there they were. My bartender and the servers! The manager and two clerks who had no other customers, plus the owner, who happened to be there with his wife. I turned on and connected to get off before I even got near the register. Just looking at the funky artistic designs of the bold, colorful shoes in snakeskin, leopard, sapphire blue, metallic and combinations of all of these. When I tried on the first pair, the owner, or, should I say the dealer, spoke to how great the shoes looked and said maybe I should be a shoe model for him.
My ego grabbed ahold of that like a shot of tequila and went to town. What should have been a twenty minute stop turned into over an hour after I virtually created a position for myself in his store as someone who would essentially lurk around customers, getting a read on the one who might be receptive to buying if I saw them hovering at a display, slipped into the back to grab a pair of what they were looking at to wear out and show them, “this is how they look on,” it was brilliant. And the owner was all over it. I gave him my number, after extolling my retail history resume and upbringing, bragging how I knew when to leave customers alone and when to cater, sharing my lesson learned from my mom, who used to nag me to try things on, saying, “go on, try it on, you can’t tell until you try it on,” which was accurate, and he was literally going to create a spot for me. So I left, elated, but only as long as the light from the store’s door closing behind me still reflected upon me. By the time I got in my car, and after calling my neighbor still flying to tell her what happened, I hung up, my mood began to rapidly deflate and by the time I got home, the high was gone, replaced by exhaustion, no groceries, an overpriced to go order and me too spent to be on that support group meeting online. Instead, I checked out on the couch with Netflix and girl scout cookies.
I don’t want to abandon myself anymore, so today I succeeded in not doing so. I got my groceries, spent the afternoon sunning at the beach and fed myself a nice dinner. So tonight, I committed to myself that I would write this instead. And I love me more for doing so. Now, I can watch a little Netflix and go to bed feeling good about getting to the grocery store and being there for me and with me.
I am starving for affection. I live alone. And I am sad that prudent measures of healthy living in the midst of a pandemic include not touching others. So I looked it up and the definition of starve is “suffering or death caused by a lack.” I don’t feel like I am dying, but a hug or two sure would be nice.
As I write this I have done some research and learned that there is a thing called Touch starvation. It even has an alias. Skin hunger.
“When you touch the skin,” explains Tiffany Field of the Touch Research Institute at the University of Miami, “it stimulates pressure sensors under the skin that send messages to the vagus [a nerve in the brain.] As vagal activity increases, the nervous system slows down, heart rate and blood pressure decrease, and your brain waves show relaxation. Levels of stress hormones such as cortisol are also decreased.” Touch also releases oxytocin, the hormone released during sex and childbirth to bond us together. In other words, human touch is biologically good for you. Being touched makes humans feel calmer, happier, and more sane.
Without touch, humans deteriorate physically and emotionally. “We know from the literature that lack of touch produces very negative consequences for our wellbeing,” says Alberto Gallace, a neuroscientist at the University of Milano-Bicocca. He explains that humans are inherently social creatures; studies have shown that depriving monkeys of physical contact leads to adverse health outcomes. Our brains and nervous systems are designed to make touch a pleasant experience, he says. “Nature designed this sensory modality to increase our feelings of wellbeing in social environments. It’s only present in social animals that need to be together to optimize their chances of survival.”
For four months now, I have missed being able to show my affection for my friends. I have felt like the loneliness in this time has been exacerbated by not being able to touch those friends that I do see while practicing social distancing. I am humbling myself to admit that too because this world has become so big on autonomy and technology that I think the need for physical contact has been dismissed and devalued.
I am in a couple of support groups where hugging hello and goodbye is common practice. And this is especially good for people like me, who don’t get physical touch at home. Since March of this year, these groups have, for the most part, taken to the online rooms of ZOOM, where we get to see those we love, but the touch needs met by the hugs hello and goodbye are gone for now and into the foreseeable future. And I miss it terribly.
One of my most affectionate groups of friends are those that I spend all day Thursdays and half day on Saturday with at a place called Stuff Dreams Are Made Of in Jenks, Oklahoma. In this modest craftsmen house, full of vintage everything from postcards to buttons to trinkets to marbles and toys, we gather to make art. A different theme suggested each week. Some weeks a scribble is the starting point. Others a mandala of mixed media finds or doll making. But really, we gather to make connections. The art is merely a by product.
And our practice there for the year and a half I have attended religiously to grow my soul with the use of paint and found objects in the company of like minded travellers is to welcome each person as they arrive with hugs all around. Everyone gets up from their button sorting, doll making, painting or gluing to literally get in line and welcome fellow creatives into the room. And we all do the same whenever someone gets up to leave the house. “Hugs!” Linda exclaims, upon each arrival and departure. And we all follow suit, as she is like our Pied Piper of Passion.
When the pandemic rolled in, we had to take a break from gathering at Stuff Dreams Are Made Of. A month to honor the mayor’s “Shelter In Place” order. Stuff Dreams Are Made of was forced into slumber.
From mid March to June, I went through withdrawals. Gone was my reason to load up my art supplies on Wednesday night for the 15 minute drive across town to this magical place where my friends and I would gather to create art, eat, pray, love, laugh and tell stories.
Gradually, we started back up getting together to make art. A couple of times in the interim, I would sneak over to meet Linda over a social distanced Happy Meal in the driveway, the chosen faire of every Thursday when business was as usual. We all suffered through chemical soaked apple slices and skinny dry burgers just to get to the toys that have been proven to be the stuff whimsical art can be made of. And meeting her helped. It gave me a reason to leave the house with the payoff of seeing my friend.
The Stuff Dreams Are Made Of woke up from its long springtime nap on the first Thursday of June, opening its doors to a social distanced small group of masked creative zealots. And I was first in line.
It was strange at first. I felt socially atrophied. So when I found myself back in the social setting with these people, I found myself talking rapid fire for the first five minutes, saying practically everything I might say over an entire day. It was like the dam had burst and I had Post Lockdown Tourettes.
But the lack of physical contact for all of these weeks, that was something else to adjust to. And while we are back at our art making, we can only see smiles in our eyes as the rest of our expressions are blunted by a piece of fabric that acts like a barrier blocking good things and bad.
After a few Thursdays of not being able to hug hello and goodbye, I had had enough.
About a week ago, when I walked through the doors right after the door opened at 9am on Thursday, so happy to see my good friend and proprietor of Stuff Dreams Are Made Of, Linda, I looked at her, and I clapped. “I am clapping my hug to you!” I said and she grinned her big kid grin and joined me. I slapped myself silly from hand to hand as an energy came from it that surprised me with relief. There was something tactile in that touch, even if it was just one of my own hands slapping the other. Two senses were sated as I could hear the smacking of skin on skin and I felt some real satisfaction. Some touch need met.
So as the others began to arrive, one at a time, we welcomed them in with applause, explaining as they looked at us funny, “We are hugging you with applause!” And they reciprocated. This went viral in a good way as each person came and went throughout the day of arting as a group.
This may seem silly, but if you think about the world we are finding ourselves in, where human touch comes with a potentially high risk until further notice, why not get creative? For those of you who live alone and are used to the hugs from fellow travellers, who are choosing to be careful when it comes to physical touch, I dare you. Try this! And if I am right, let me know what you experience.
In the wise words of Herbert Spencer, 19th century english philosopher, biologist, anthropologist, and sociologist:
“There is a principle which is bar against all information, which is proof against all arguments and which cannot fail to keep a man in everlasting ignorance-that principle is contempt prior to investigation.”
Let’s start a new virus. One that won’t need a vaccine.
“We don’t like your image. Come back tomorrow.” The words that I heard just before I hung up my phone. This wasn’t about public persona either. No, the image referred to was the mammogram that I had just had. Number 13 in a series of annual boob squishings.
I was 42 years old, a wife and the mother of a 4 year old daughter. We were getting ready to build our dream home and move to suburbia in Bixby, Oklahoma to raise Abby, plant flowers, walk dogs, go to basketball games and be happy.
My mother had breast cancer when I was 30. She was 67, lost a boob, took tamoxifen for five years and she was good. Hell, the day she got home from the hospital after over a week of festivities, she was out sunbathing on her deck while I passed out on her couch.
When I showed up the next day for this follow up appointment, I wanted to throw up. I lay on the table, surrounded by techs and in walked the doctor. Not just any doctor either. This guy was the head of radiology for Hillcrest Hospital in Tulsa, Oklahoma.
I tried to crack jokes as I lay there outnumbered by people who had their clothes on and one ominous looking shadow about the size of a grape with a big red circle around it on the x ray screen.
I am quite sure I was funny, but this was a tough room. Not a peep. Until the doctor took over the stage. “You have a stage 1 breast tumor, 8 out of 9 for aggressive growth…blah blah blah, blah blah blah blah” was what I heard. In an instant, I had joined the ranks of a group I wanted nothing to do with. My mother was a member, her mother had a breast removed, (unclear if that was cancer), my Aunt Rosemary had succumbed to metastasis and we had just buried a member of our church who fought long and hard for 16 years from a stage three breast cancer. And I was about to get schooled in the science of cancer, whether I liked it or not. And I did not. In fact, a lot of the information bounced right off as I was in complete shock.
My case was more complicated than my mother’s. The start to finish of it all. My journey, while not as bad as some, I mean, I lived, but what I did experience in the process was from hell. There is no other way to put it. Not only was the cancer actually a 9 out of 9 for aggressive growth, meaning whatever was in me was growing at the highest speed, my ensuing treatment and recovery spanned two long, hard years.
Cancer Treatment Center is in Tulsa and was open at that time, offering a holistic approach, using conventional medicine, spiritual guidance as well as counseling and nutrition.
I chose just plain conventional medicine. I didn’t give much credence to spiritual anything or nutrition for that matter at that time because frankly, while I was sober and spirituality is the cure for me there today, at that time, I worshipped a God in the form of my intellect and the fact that I had it all, things outside of me- the kid and the van and plans to build the house, so I saw no merit in the added expense of that other God stuff. What’s funny is that it was The Cancer Treatment Center that ultimately made me whole again at the end of what was a two year walk down a hallway that had a few burned out light bulbs along the way.
The day I found out it was cancer, I was exhausted. It was an afternoon sometime in June and I was sprawled across my bed. My daughter Abby, age four, walked in and stuck something on me and left. When I looked down, what I saw was a red heart shaped sticker about an inch in size that she had gotten out of a February issue of a kid’s magazine. And when I looked at the spot where she had (not so) randomly placed it, it was right where the tumor was located. This was one in a series of many moments that drove home the undeniable fact that God was present in the midst of a very rough patch in my life.
In order of appearance, the treatment players were these:
July 18, 2002-Lumpectomy in Sunny California, where we were led by a long set of circumstances. These made Dr. John Phillips, a brilliant surgeon in Tulsa, Oklahoma who had taken care of my mom, and removed many breasts once belonging to old Tulsa oil money bless the trip.
Dr. Phillips is part of the reason I am still here because right after my mom’s surgery, he sat me down when I was just 30 (like the father I did not have after age 7) and said, “You, young lady, will have an annual mammogram from now on.” I did not do the recommended self exams because I had fiber cystic tissue, a.k.a. lumpy boobs and the “normal” bumps to the touch made me gag, so thanks Dr. Phillips. Those mammograms paid off.
Lumpectomy is where they just cut out the lump and the tumor, along with a prudent amount of lymph nodes from under the arm so that they could check them for cancerous cells. The good news for me was that it came back a negative, meaning that avenue for spreading was likely to be a dead end.
Lymph nodes are small, round or bean-shaped clusters of cells. Inside lymph nodes are a combination of different types of immune system cells. These specialized cells filter your lymphatic fluid as it travels through your body and protect you by destroying invaders.
They took 14 of these good guys away from me and I was left with the lifelong threat of a thing called lymph edema. That is when there is a swelling in the arm which can come on anytime post cancer and can be very painful. I attended a support group once with cancer survivors who had a long period of recovery and had been get hit with this painful condition out of nowhere. I take precautions with massage therapy, exercise and I wear a compression sleeve to travel.
We made the best of California. My ex -husband, who I refer to as my wusband, daughter and I sleeping together in a “Heavenly” California bed like Charlie Bucket in Willy Wonka’s time. We lived at the Westin Hotel in Costa Mesa, near the breast care center at Fountain Valley. We were there for a couple of weeks and while there, we enjoyed the beaches of Malibu, Laguna and Huntington.
The day after my lumpectomy, I left my wusband and Abby asleep, slipped off to La Provence, the fancy hotel coffee shop for a scrumptious celebratory bowl of oatmeal that had creme brulee on top. As I made my exit, I stopped at a round table of people who appeared to be having a business breakfast, uninvited. “Yesterday, I had cancer. Today, that tumor is in a ziplock in a dumpster somewhere in Orange County.” This was my boasting. It wasn’t much weight loss to be rid of that tumor, but the weight lifted was immense. The response was enthusiastic as they gave me a unanimous round of applause.
A day or so later, we got a doctor’s note for the short lines at Disneyland and went to the Magic Kingdom. I had never been and since my daughter was four, well, we just HAD to go. We had a great time, I bought out the gift shop and then it was time to return home to our “new normal” life living after cancer in Oklahoma.
Summer/fall 2002-Next up, chemotherapy. I could paste the definition of the word and the process, but my version will make the point. It’s liquid poison. Used to kill lots of things. Like cancer cells, healthy cells, happy cells, appetites, spirits and energy reserves, and any hair that you might be fond of and even some that you aren’t.
Abby was also quite cognitive of the fact that I was going to lose my hair because I was sick. “Mom, I wanna shave my head.” She sounded like a teenager, standing next to me in the bathroom at Lowe’s, until she followed that up immediately with a perky “Will it grow back in two weeks?” We compromised and she settled for a mohawk with blue glitter.
When I was pregnant just four years before this, I spent my first trimester in bed and in the hospital for nausea, but let me tell you, that was NOTHING like the nausea I had with the “A/C Cocktail,” as the kids in the clinic like to call it. That stands for Adriamycin/Cytoxin. Two toxic liquids that get shaken, not stirred, then placed in an IV and slowly, but surely, over a period of hours, with six trips over a couple of months to just drive that shit home, sent into the body through an IV and a port. Just to give you a clue, Cytoxin has a pet name of “Red Devil” as it is one of the most toxic of all. If it gets ON the skin, it can cause severe burns. And from my experience, (I won’t get into much detail,) it felt like gasoline coming up my throat when it left me through a different pathway from the nice little port it came in on under my chest skin.
The day before chemo was to start was a field day at the hospital. I was wheeled and rolled from place to place to get checked out for treatment. Bloodwork and installation of a chemo port, all part of the day. A port goes in the chest area so that there are less needle sticks in the skin so that when they plug in the IV, the access is already there.
Somewhere along the course of my day, I decided to have a party. That night. I called it my “Comfort Shower On Chemo Eve.” The idea was to have a party to distract from the fact that I was having chemo the next day. And it grew to include a cost for admission which was a tube of pink lipstick.
My anxious brain had a wild idea to start a foundation called The Great Pink Hope. I had worked in low income housing and when I found out I had cancer, I learned that the demographic of low income and minority women had a higher incidence of breast cancer. I thought that maybe these women, who typically did not have access to any reliable transportation if they did go for a mammogram, could be coaxed out of their apartments to be tested with some kind of mobile mammography service by giving them a free tube of pink lipstick for their trouble.
It was a slow news day in Tulsa, so all three local TV stations showed up to cover the happy event. One ran their story in a special that October during Breast Cancer Awareness Month. I confess, I invited them. I still knew the number to the KJRH newsroom, Tulsa’s NBC affiliate where my brother had been a reporter in the 1970’s and I felt like this was good news.
By the end of the night, a good time had been had by all 50 or 60 people who attended, some I knew, some I had only met that day in my travels through the hospital halls, and whose cars at one pointed wrapped the street next to my house down one side and filled the cul de sac on the other. It looked like that scene from Field of Dreams where all of the cars showed up at the baseball field. “If you invite, they will come.” And they did. Leaving me with a huge bowl of pink lipsticks ready for a good night’s sleep.
My posse and I arrived for day one. Me, my wusband and daughter, our pastor, my mom and my neighbor all crammed into the waiting area. Then they took me back first, and in a few minutes, my wusband followed. On his way, he was met by a woman wearing a white coat with her name embroidered on the pocket who claimed she had been to med school and who, violating HIPAA, spoke to him before speaking to me about her plans for my (mis) treatment.
“Your cancer is back. It’s in your breast, your liver, your uterus and your ovaries. While it is incurable, it is treatable. We can make you comfortable for two years, using the drug Taxotere.” I could only wish that this shock came from a toaster dropping into my tub, but no. Not only was I just pronounced soon to be dead, but the drug she named to “make me comfortable” was a word I had heard once before.
In the midst of all the jargon and staging and planning in California, the one thing that got through was the result of my assay, which is the process they use when they cut up the tumor and test various toxic cocktails to see who the best ones are for the job. And the one drug that my tumor essentially said “F*** no, I won’t go” to was called Taxotere.
I had California on speed dial and while I stood in line for stand by boarding, I prayed to God, “Please get me on this flight.” when my name was called and I boarded to seat 1 A.
Across the top of my chart, this oncologist in California, who actually went to class looked at me calmly, then looked down at my chart, and then popped his head up when he realized it was me. “What are you doing here? You are supposed to be starting chemo in Oklahoma.”? Incredulous in his affect and tone, while trying to remain professional. “The doctor over read her chart.” His words to the diagnostic center (I think it’s code for “some doctor f**ked up here”) where I would spend the next four days, drinking barium smoothies, getting injected with contrast fluids, having my ears plugged to drown out the hammering of the MRI. Four days where my 9 out of 9 for aggressive cancer, if there were any crumbs left, was throwing a party at my expense.
On day five, I was cleared of all counts. And the death penalty was off the table. Now I had been given a prognosis with better odds, a first round of chemo and a plane ride back to Oklahoma to get back to my “new normal” life as a cancer patient.
And that woman in the white coat in Tulsa? That was in the (mal)practice of prescribing toxic drugs? I could not find her. And believe me, I looked. She was off the grid. I intended to file a complaint, with the hope that she wouldn’t (mal)practice on anyone else. And I said a prayer that whoever she did serve in her illustrious career might be someone across the counter at the food court, as she sported a tall, stupid hat, selling hot dogs on a stick.
During the early part of my treatment, Bob Losure was there for me. Former anchor at CNN, Bob had worked with my sister in television in Tulsa back in the 70’s. Bob was also a cancer survivor, so he knew what it was like. All throughout my treatment, Bob either called, emailed or visited me, inspiring me with his words of hope and encouragement. It didn’t hurt to hear them in that beautiful satiny broadcast voice. He interviewed me for a story he was doing about cancer and survivors.
Next was radiation. Another burning process. This time, burning tissue, leaving it hard in the aftermath. The recommendation for my flavor of tumor was 35 rounds, 5 days a week, over 7 weeks time.
By this time, it was winter, and I was bald, tired and very depressed, so after 6 rounds of laying on a sterile steel table, wearing nothing from the waist up but a creepy screen mold that was shaped like a torso set over me so that they could aim the xray guns at the small tattoes I now had dotting my upper body for precision of their sharpshooting.
It was a Friday afternoon and I had just come home from round number 6, when I sat on the floor of my brand new dining room, (we built the house against the advice of my primary care doc and friend Marilyn Culp because I thought I needed the distraction) and the phone rang. “Lucinda, it’s Jane.” My surgeon from California who had saved my life once already by cutting out that tumor and a second time when she told me on the phone that she did not “have confidence” in that cancer of an oncologist.
Her call was divinely timed, although I was a little mad at her, because when we first made the pilgrimage to Fountain Valley, California to the Women’s Breast Health Center that had been recommended, I had BIG plans to come home with BIGGER boobs than the ones I left home with. She was too good at her job, coming to tell me after surgery, “Good news! You are cured with breast conserving lumpectomy!” I was both relieved and disappointed. I think my first wusband’s message to me at the age of 23 that he thought I needed larger breasts had stuck with me all those years. I even had a Hooter’s T shirt that was autographed by the wait staff wishing me well on my trip and treatment.
“How are you?” Jane said. She let me call her Jane because California doctors like her, whose esteemed medical family have streets named after them in Long Beach can do whatever the hell they want.
I explained that my mood was not good. An underlying concern throughout as I showed up on her table with a significant history of major depressive illness. I also let on that laying there for that radiation was playing games with my head as I felt vulnerable being naked from the waist up and not free to move. “I don’t want to finish the radiation.” I told her, knowing in my heart of hearts that I could not take any more of that. “What do you want to do?” She asked, to which I did not miss a beat in my speedy reply. “I want to have a double mastectomy with reconstruction.”
I could have stopped there. At lumpectomy and chemo. On paper, I was “cancer free” the day I left a tumor in a ziplock bag somewhere in a dumpster in Orange County. And the chemo most certainly did a number on SOMETHING. But the prudent measure was not to stop there.
I had done much reading and the consensus among women who, in some cases, were in the medical field, was to go ahead and have both breasts removed to reduce the chance of recurrence because statistics were higher for metastasis when the breasts were left behind. I later learned of two cases of women who, like me, were deemed “cured” with lumpectomy and chemo, but in both cases, the cancer returned and the women did not survive.
The reconstructive procedure that I chose, after the breasts were removed, is called a pedicle TRAM FLAP reconstruction. In a pedicle TRAM flap procedure, the surgeon cuts a section of skin, muscle, fat and blood vessels from your abdomen, tunnels the tissue underneath your skin to its new location, and uses it to form a new breast mound.
In my words, what happened to me was this. Over a period of six hours, four doctors would have a part in this. The general surgeon came in first, removed the breasts, leaving the surface skin. Then, enter the plastics guy. He is the artist. You don’t need a bedside manner with this one. You need someone who thinks they are God and performs to the best of their ability. And I got that in spades. What he did was make a big cut across my abdomen in the shape of an elipse, then take the tissue and muscle there, divide it up and going under my own skin with it, he moves it up from my abdomen and into place under the top skin that remains where the original breasts once were. And if you are cringing here, sorry. But this is my story. And it is quite amazing.
While the procedure was a technical success, the recovery was from hell. At six weeks post op at home, where I was sleeping in the recliner because I could not lay down yet, the pain was severe. And because of my mental health history being part of my record with the plastic doc’s office, he was all but too eager to say hasta manana to me when I hit their magic six week mark. “Our patients don’t have pain at six weeks.” The dismissive words on the phone from his office as I was left on my own to find a solution to some very real pain that resided in my back.
It took two years from that point to find my solution. Went down the pain management hallway, treating the symptom but never the problem with fentanyl patches for a large part of that time.
Nothing was working. And the reason I was hurting there was that I was literally stuck. To myself. Yes, you can laugh if you know me. I was stuck on myself. The pathway that my abdominal tissue and muscle had travelled along my mid section from my well earned tummy tuck to my abdo boobs, as I like to call them, was full of scar adhesion. And this made standing up straight and upright completely impossible. So my 5’10” frame was working against gravity for all of that time, until finally, somehow, because there is a God and I am not him, I was directed to the Cancer Treatment Center of America for what is called myofacial release. A most gentle and gradual process of a massage therapist gently coaxing my innards to let go of each other, where they were holding me down so that I could join my fellow upright apes.
I survived. And today, I thrive. 18 years. July 18. Cancer free.
If you are reading this and you are a woman, or if you have a mother or a sister or a daughter or someone you love who you don’t want to lose, ask them if they are taking proper care of their girls. Mammography has come a long way. I learned that some women know that they should go, but they fear the discomfort that might come along with that. My reply? DO IT ANYWAY. The pain of your absence in the lives of your loved ones if you are lost to this far too common form of cancer could be prevented.
There is much more to this story, which I am telling in my book. But for my purposes here, I want to list the gratitude that I take away from my experience of having had breast cancer.
I am grateful for the oncologist who taught me to trust my instinct over someone who is quite literally practicing at their craft. She did me a favor. I have no idea what went so terribly wrong with her interpretation of my medical records, but had that not happened, I would not have seen the need to be my own BEST advocate for health and medical care. Those who, even well intentioned, practice medicine, are just people. Who went to school and got training. Don’t get me wrong, I am not dismissing the expertise of some doctors, but not ALL doctors are worth their salt. And they are ALL human. The lesson here? Trust your gut. If it says, “What this doctor is saying to me doesn’t sound right.” Listen to that still small voice. And run like hell for a second opinion.
The plastic surgeon also did me a favor. When he dismissed me and my care with the insinuation that my pain was “in my head”, it drove home for me that when a person has a mental health diagnosis on their chart, some doctors don’t want a thing to do with that. I didn’t go to med school, but I have noticed that the human head, where the mental health or sickness resides, is a part of the physical body. But hey, nobody asked me.
This was not the first time I had found myself being dismissed by a doctor with the coincidence of my chart including a mental health diagnosis and the blessing in that was the education to the fact that some doctors don’t care. Stigma is a powerful thing.
The first doctor who dropped the ball on my care over mental health issues was the man who delivered my daughter. I suffered with tremendous postpartum depression which required hospitalization after she was born, which rendered me virtually unable to take care of her. For that entire pregnancy, my resounding concern out loud with the OB/GYN doc was that I was ripe for the picking to have some kind of major depression after childbirth, based on my history and the research I had done on postpartum depression and psychosis. I had a reasonable expectation that he would support me in my care after her birth. And I was wrong, as he too, dismissed me at that magic six week mark. I guess that is a time frame that specialists get to use to decide when they can dump people who are too much work for them.
I am even grateful for the cancer. And while, at times since, I sometimes forget that I got another shot at life having survived it, it is proof in my book that God wants me here fore something. I lived through it, and since it is far too common today for people to get breast cancer, I know I did not suffer in vain because I can share my story in the hopes that it will enlighten others to see what they might expect and also what they do and don’t have to tolerate from the doctors along the way.
I am grateful for the scars that I have. My scars have made me feel unfinished all these years. They have been difficult to live with as I don’t look the same. Over the years, the scars have faded quite a bit, but I still have a long one across my abdomen and scars on both breasts which I intend to have tattoo art done on at some point as I, an artist, am my most precious canvas.
And when it comes to intimacy, it has been quite a vulnerable thing to have to prepare someone for the scars that contributed to the ending of the intimacy in my marriage of 24 years. That left a mark of its own. But it has all forced me to find a self love that goes beyond skin deep. In that respect, these scars are a thing of beauty because without them, I may not even be here.
If you find yourself with a diagnosis for breast cancer, remember that you are paying the doctors to provide you a service. Coming to an end are the days when the doctor is the authority and final say. You have always got a choice in how your care will go. Do your homework. Learn all that you can. About your diagnosis and your treatment options. If you don’t trust your doctor, find a new one. Your life may depend on it.
Find people who have been through the kind of cancer treatment that you may be facing. The American Cancer Society is a great resource for pairing people up with those who have been through that same type of cancer and the resulting treatments. I had two people matched to me as mentors for when I faced chemo and my double mastectomy. They were great comforts to me for the fact that they had survived what I was facing at a very scary time.
One of my doctor’s (I have one for every orifice at this point) said, as I look to find a replacement in my new home out of state, that a doctor/patient relationship is not a dictatorship. It is a collaboration. And should be a relationship based in a mutual respect. Especially in matters of life and death.
I don’t have a problem changing doctors as I age if I feel I am not both respected and well cared for. You wouldn’t take a Maserati to Joe’s Garage, and aren’t you worth the best you can find? I think so. Life is a precious gift. And so are you.