Tag Archives: Angelina Jolie

My ReBirth Day

The most outwardly feminine part of myself, I took to the altar and offered up to the gods. I bargained for my life. When I could finally form words into a semblance of prayer, it was “Take my breasts, but let me live to see my boy grow into a man. Please!”

I was the first woman in my line to benefit from the advances in genome mapping, the first to test positive for the BRCA 1 gene mutation. The “Angelina Jolie gene” as people have come to think of it. Grandma had died before I was born, not long before I was conceived. She was ravaged by breast cancer and lost the battle at the age of 58, one year older than my Mother is now, and nearly the same age Mom learned that she too caries this ticking explosive in her coding. Viola was her name, and in 1973, the butchery done to her bore no resemblance to modern day reconstruction.

I grew up hearing, “Cancer often skips a generation,” and like prophecy I found that lump in my left breast at the age of 36. I told no one, but I was sure I would die. A curtain had dropped somewhere between diagnosis and the third opinion. When I tried to imagine life after surgery, there was just blackness, a void of absolute nothing. I wore my best poker face that morning in pre-op, chatting bravely for Mom and for my husband, Joey, for I could never let them consider this was a one way trip to the hospital. Inside I felt I had been led to slaughter.

I went in there and let them lop off and scrape away every last bit of breast tissue. Then like Frankenstein’s whore, implants were crammed in on top of freshly scraped ribs. They were sandwiched between pectoral muscles that were pried up like thick clams to hold the implants in place.  Surely going for aesthetic, as is a plastic surgeon’s job, his calculation for pain held little thought. No measure of research or soul search could prepare me for the searing reality of nerves severed, of nipples excised. My brain could not compute as all the signals flashed red, an angry train of phantom feelings, the demonic ghost baby sinking teeth for the well gone dry. In morphine addled delirium, I cried, “I told him I was fine with the B cup! He did whatever he wanted!” The swelling and tightness was more than I could manage, morphine and later oxycodone barely floating me through each crashing wave.

I am one year a survivor now. It has been one year since that July 15th double mastectomy which included removal of three sentinel lymph nodes, confirming the Triple Negative tumor had not breached the lymphatic system. I was “lucky” to have found it in an early and treatable Stage 1 the previous winter. Julian was using me as jungle gym, and I felt a stab of pain right over my heart when he climbed on my chest. I brushed it off for 2 or 3 months as just a swollen lymph gland. Although I am sure I have changed, surgery and the chemotherapy that followed could not stop the force of who I am.

If only there was a way to have reached through that inky black uncertainty, to have touched myself on the arm with a sisterly stroke of reassurance. I would go specifically to the day right before surgery, when I lost my shit and punched a hole through the bathroom wall, my rage parting drywall like soft cream cheese. I would sit on the edge of my bed that sleepless night before my first chemo treatment and show her the scar where the port used to be. I would let her run her fingers through my crazy thick hair when she is at her most bald, the eyebrows and eyelashes jumping ship too.

Slogging through each painful, exhausting day, there is a momentum forward that can only be appreciated from the top of the mountain. Now I pause on the adjacent peak, just one version of my future self that was unknowable to me while I marched straight into my terror and uncertainty. The view, which was obscured entirely at the start of this journey, stretches in panoramic possibility.

This June I resumed the Life Coach training program I had embarked on just 3 weeks before that shattering diagnosis. I wasn’t sure I had it in me to navigate New York City. I felt like I was barely formed and far too soft for such a hard world. Sweat poured from my face as I dragged that wheelie suitcase from Port Authority into the subway going the wrong direction. Pinched for time, I jumped into a cab, and soon we were gridlocked by a manhole fire, just before the cabbie clipped an SUV. While the two drivers screamed at each other, while I was feeling pathetic for getting lost and being late, I nearly gave up on my dream. After all I had been through, it was my deep shame at showing up late, at feeling like a complete farce that almost turned me around.

In spite of having the rug ripped out the year prior, the minute I sat back in that circle of classmates, and reconnected to this transformative work, I knew this was my path. My heart grew in resilience and pumped up fresh wisdom from a well of compassion previously unknown to me.  I found a direct line to the eternal part of myself that, although obscured, had pounded the drum to deliver me here. By the end of the seminar I had rededicated myself to this vision. I had fully emerged from the chrysalis and kicked off that remaining bit of identity of, “Melissa the cancer patient”.

Returning to the city last weekend, I chuckled to myself in realizing Port Authority is really only 5 blocks or so from the hotel where we meet. I remembered too that I have GPS capabilities on my phone to fall back on and began to relax in the stream of people flowing all around me, life in its varied colors, smells and dialects carrying me forward.

ReBirth Day

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Scar Tissue

anesthesia

The brain heals memories like scar tissue. Little pockets of betrayal, oozing pustules of heartbreak, shards of anger encapsulated, slowly covered up by a thin layer of skin and hardened there. If you’re lucky, if you massage the memory just a little but not too much, you’ll end up with a scar you can live with. Sometimes the memory is still too fresh, the membranes of remembrance barely fused together, leaving obvious traces still hot to the touch. Just a wrong look from the wrong person at the wrong time causes the seam of it to weep and there I go getting undone again.

I clutch my hand to my chest to steady myself and hope to hold back the fever. This one is too soon to even remember, a baby of a memory, threatening to break me open and take all my insides out with it. I can’t sing myself a lullaby of denial and go back to sleep. An unspoken part of me wishes I were an alcoholic, so maybe the bottle could keep this under wraps. But I’m not, so here it comes again. These words will undo me and maybe do me in.

The too soon time of which I speak, the one I hope to fade to memory is that of my surgery. My double mastectomy with immediate reconstruction that took place last July left wounds that are healing far faster on the outside than in. “Give it time,” a rational person will counsel. But a memory, just like a wound is breeched if you get too close and you rub it the wrong way. Thanks to mass media and Angelina Jolie, most people by now have heard of the BRCA gene mutation, which is the culprit behind hereditary breast cancer. Discovery of that lump in my left breast a year ago soon led to genetic testing, and the revelation that my mother too caries the BRCA 1 gene mutation. My soon to be 57 year old Mom, who has never had cancer, is about to undergo a prophylactic double mastectomy.

At this point, the universe is just messing with me. My mother’s surgery has been rescheduled twice now. The first time, I was at her house dog sitting and she was at the hospital about to meet with the anesthesiologist when the surgeon came in and canceled the whole thing. He sent her home that day because he said he had been up all night thinking about the complications that I had, and wanted to take an entirely different approach than what was planned for that day. The second time the surgery was rescheduled because my Mom had to have a non-elective surgery first, to remove a bile duct stone.  Each time the date is set, a countdown begins inside of me. Now a third date has been set, and on the outside I am steady and supportive, upbeat and positive when I speak with her. We talk about practical things, like button up shirts and rearranging her shelves so she doesn’t have to reach for things. Like me, she wears a good mask of efficiency and organization. Like me, is she scared shitless inside?

There is no way to really prepare yourself for a major surgery like this. Doctors and nurses will gloss over your concern with a gentle smile and tell you it won’t be that bad. (They tell you this because, A. They have to, and B. They just don’t know, and C. They want to comfort themselves and won’t you please stop asking the hard unanswerable questions.) You can read all the pamphlets, books, blogs, websites and forums you like but in the end the outcome is the same. You will be on the table facing the blade, your skin will be cut, nerves will be severed, tissue removed. You will be sewn back together. Anesthesia will make you groggy, grievously sick and later constipated. Drains will awkwardly protrude from under your arms and collect bloody fluid for you to measure, record and dump twice a day.

It is the searing pain that I am most afraid of… even afraid to tell of because it hurts to remember and write about. Waking up, with the anesthesia wearing off, even fully loaded with morphine, it was like a Mack truck smashed into my chest and I was left with a load of cement on top of me, pushing against each breath. The nurses were eager to get me out of bed to walk to the bathroom or stroll down the hall. I thought they were completely insane. It took so much effort and another morphine drip just to sit up and leverage myself against the bed. You can’t use your arms to push up off with or steady yourself. I remember teetering towards the bathroom and then came the challenge of wiping myself. The first week, I could take care of #1, but really couldn’t reach my backside. There goes privacy and dignity. Hopefully someone loves you enough to know you in this more than biblical sense.

I spent less than 22 hours at the hospital from admission to release. It seemed the sweet and doting night nurse had been replaced with a hard, cold and unfeeling morning nurse whose job it was to make my stay so unpleasant, that I would be eager to get in that wheelchair and scoot my agonized self out the door. It was the longest 45 minute car ride of my life, as I could feel every little bump and turn in spite of being padded with a fortress of pillows. My long, unpaved and potholed driveway had just received an emergency last minute load of gravel by the landscaping company my step-brother worked for. It was a crazy scramble to make happen on short notice, but after I threatened to walk up the ¼ mile driveway, everyone knew it had to get done.

I vomited every last bit of anesthesia out of my body the first night home. With nothing able to stay in my system, every wretch wracked my body with hot searing nerve pain, and I felt every bit of it. I remember my husband saying, “This is fucking insane. How could they send you home like this?” Those first few days are hazy to me, but my husband says that everyone was falling apart. Our four year old son had to be barricaded out of the bedroom and could only visit me with careful supervision. Everyone was worried and regressing. Both the cat and our son were shitting everywhere. My husband’s neck and back had seized up so bad, that I thought I would have to call my Mom to come stay with me because he was falling apart. I pray we will never have to live through something that hard again.

Think of how delectably sensitive your nipples are, then imagine having them cut out along with all the nerves and tender tissues below. Every time I was caught in a slight breeze, or touched a certain way, stabbing nerve pain would radiate from my phantom nipples. I was having phantom milk “let-down” feelings again, where a nursing mom feels her milk ducts release. It was a knife in the heart to have to hold tender memories of nursing my baby at a time like that.

Sleep could only happen in 3-4 hour windows while the narcotic pain relievers did their job. I would escape to dreamless sleep in a semi reclined position, my back and arms fully supported. My preferred method of side-sleeping was not possible until about two months later. I was sewn up tight and fragile and walked that way too, my shoulders sort of hunched up and frozen like a turtle caught without it’s shell. For about the first 3 weeks, I learned to manage with a regular 4 hour dosage of oxycodone or hydrocodone, then I was cut off. The doctor felt I could manage with Tylenol, which didn’t even come close to touching the pain. I had to learn to feel the pain in a whole new unmedicated way.

I suppose surgery is like childbirth in the way the body can go through such a shock, such profound pain, and find a way to heal, to bounce back in some respect. I didn’t have a beautiful bundle of joy to take home at the end of this excursion though. I was the helpless baby, crying and inconsolable, until I found that it hurt too much to cry, that I was too dehydrated to cry. No one could hug or hold me anyway.

I want to comfort my Mother. She has seen my nippleless breasts, and the meandering snake of a scar on my left, the horizontal crescent moon on my right. On a braver, happier day I have proclaimed that I am more comfortable in my skin than I have ever been since the day of the surgery and that she too will one day get to this place, with time and healing. We try to make light by rejoicing at the miracles of plastic surgery, to be able to have your boobs on your chest again, rather than lugging around saggy, tired “Nat-Geo” breasts that droop down towards your navel.

I just don’t want to face this surgery again. I want to save my Mother from the pain she will endure. A very small childish part of my brain thinks this is happening because of me, because of the lump that I found. I’m sure she had to face that same demon, to see her little girl suffer because of a genetic trait passed down. Really this is no fault of our own. Still, could someone please put me to sleep and wake me 6 months later? Logical brain knows that this is the best choice… the right choice. Those breasts that had nourished me as an infant, just might kill my mother. If she chose not to have surgery, intensive screening every 6 months might be the thing to kick that cancer gene into action.

Each time this is rescheduled, we play with time, we play the odds game. There was no one to save me from facing this surgery. The countdown continues. Tick… Tick… Tick…

Thank you Grandma, I love you and I’m sorry

Dear Grandma Viola,

We never met. I am the oldest daughter of your youngest daughter. You passed away only a few years before I was born. My mother watched you be diagnosed with breast cancer at the age of 51, go through a barbaric mastectomy, which was the best they could do at the time I suppose. I understand that you passed away at 58, partly due to your fear of cancer and doctors and by the time you sought treatment it was too late. I’m sorry for your pain and your early departure. Mom told me years later that having seen you suffer with cancer at the age of 15, that she was so terrified of her breasts to the point that she begged her own doctor to remove hers. At that time, prophylactic mastectomies were unheard of. In hindsight, I understand that fear.

Great Grandma, Grandma, now me.

I don’t wish to follow the same path as my fore-mothers.

I will not let fear rule my outcome. I will be a warrior and wear our family crest upon my scars.

I am a 21st century woman with options of improved diagnosis and care for breast cancer survivors. The science that is available now is staggering and I am sure will be beyond our imaginings 50 years from now.

Angelina Jolie and countless other women who have had to make the difficult choice for a prophylactic mastectomy suffer much criticism and heat. I am here to say that unless you have sincerely walked that path, unless you have seen someone you love be ravished by cancer, you must refrain from making judgement about this very intense and personal decision. Trust me that this is not a fickle decision, like what kind of hair cut to get…

In my case, the surgery is not prophylactic, but a genuine action against the cancer growing in my breast. I will not let fear rule my outcome. I will meet this head on.