After hearing about Angelina Jolie’s recent decision to have elective surgery to remove her ovaries and tubes, I feel thankful to her for bringing light and attention to women’s health. Knowledge is power and having the bravery to use that knowledge to help herself makes her beautiful inside and out. Jolie’s surgery was preventative. Mine was not. But in several years, I will have the power and the knowledge and the option to attack my fear head-on and have a full hysterectomy. Surgery isn’t ideal. Neither is early menopause. But the ability to live life without a permanent sense of dread will make it all worthwhile.
To read Angelina Jolie’s powerful story, check out her Op-Ed piece here: http://www.nytimes.com/2015/03/24/opinion/angelina-jolie-pitt-diary-of-a-surgery.html
To read my story one more time, check out my earlier blog here:
I’m feeling particularly reflective this week on the more serious aspects of life and while I have the time, I’ve decided to get it all down.
Earlier today, I posted about being an advocate for your child (or children’s) health. It’s extremely important that as parents, we are vigilant and we speak up on behalf of those in our care. But equally important, is the idea of taking care of ourselves. I’m reminded of the flight attendant’s speech on airline safety. “In the event of an emergency, please secure your own oxygen mask before assisting others.” If our own health and well-being is failing, it is impossible for us to care for another.
I’ve alluded to it in past posts, but tonight I’d like to share a very personal story. It is in this story that I learned about being an advocate for my own health and well-being and it is from this experience that I’ve grown into the strong and outspoken woman I am today when it comes to health care. I wrote this cathartic essay last year as a way to cope with a very traumatic experience, but also to shed light on a serious condition that is very unknown. It’s an honest account of a difficult time in my life. I hope after reading about my experience, you can walk away feeling empowered to know your own body and to advocate for your healthcare needs, even when met with resistance (or dismissal or crazy stares or or or or…).
And in an effort to show your own self-appreciation, please join in the Milk Free Mama Challenge.
Spread out, my back firmly planted against the mattress, I lay crying. I felt exposed, vulnerable, afraid. Even though I felt isolated, I knew I wasn’t alone. The tears were mounting and I reached out for someone, anyone, to hold my hand and tell me everything would be alright.
But the truth was, even though someone did reach out, I knew her words were false. She didn’t know anymore than anyone else – my mom, my husband, my doctor. But I knew. I knew in my gut that things were not alright. I tried my best to smile through the tears, to put on a brave face as they wheeled me into the operating room.
Newly married, I felt on top of the world. My husband and I dated for five years before we tied the knot, and even though I was only in my second year of teaching, we were discussing starting a family. We were excited and hopeful at the idea of raising our own brood. As I prepped my students, in March of 2008, for their upcoming English Regents Exam and SATs, my husband I and started trying. The trying and the pressures of a new job put me into full-stress overload, not conducive for a peaceful internal baby-home. I started getting recurrent infections and the doctors wrote them off as normal female issues.
A couple of months passed by – more infections, more doctor appointments, more co-pays, and no baby. I sought out doctor after doctor in my OBGYN practice and I still got no concrete answer as to why I was suffering from re-current infections. None of the doctors thought there was anything drastically wrong with me. None of the doctors thought these infections were inhibiting me from getting pregnant, except for the fact that I was abstaining from sex so the infections would clear up. I solemnly trudged on and finished out the school year.
At the end of June 2008, I decided to reach out to the high-risk doctor in my practice. I knew that the high-risk related to pregnancy and that the chance of him diagnosing something different than the last five doctors in the practice was slim to none, but at least he might have some encouraging words to offer on the pregnancy front. This was the first time I would meet my hero face to face, my savior in scrubs.
Dr. B decided to do a sonogram to see if that could shed any light onto the situation. Sure enough, it did. There was a small cyst-like obstruction near my right ovary. I would need more tests in a few days to confirm its nature. So my first meeting with Dr. B at least offered some answers as to why I had discomfort, but to this day, the doctors do not believe the infections had anything to do with the cyst. I however, wholeheartedly disagree and I believe that my body’s rebellion against itself began with those infections. I called my husband with the news and then I called my mother. She assured me that cysts and fibroids were often nothing to worry about. But for some reason, I had a sinking feeling in my stomach. Something just wasn’t right.
Three days later, my husband drove me early in the morning to the radiological group that would perform the sonogram. I sat on the edge of my seat, a painful ache in my lower back which I equated with the overwhelming urge to pee out the 32oz. of water I was instructed to hold in my bladder for the sonogram. In hindsight, I know the pain was caused by more than that. My appointment was early in the morning and I remember skipping breakfast before we left because my husband and I were going to go out to our favorite local diner afterwards. My husband sat with me in the waiting room, somewhat detached, and I suddenly felt isolated. When they called me in for the test, my husband said he was going to wait in the car and I could meet him downstairs when I was done. Clearly, he didn’t think the test would show anything horrific and clearly he hadn’t yet been trained in Husband –Ettiquette 101 – stay with your nervous new wife during medical testing. He later learned how to let me lean on him when I needed to. As I lay on the table and the technician prodded me with her probe, I could feel the tension mounting in the room. I was in pain and the radiologist was called in. He prodded too and instructed me to get dressed while he called my doctor. None of this sounded good.
When he returned, the radiologist explained that my doctor wanted me to go for more tests. They needed me to go right away to the CAT Scan/MRI office across the street for further testing. Questions ensued – “Is someone with you?” “Yes – husband in the car.” “Did you eat yet?” “No.” “Great, head across the street.”
I ran out of the office, trying to force the tears back into my eyes, but they just tumbled out. When I reached the car, my husband was on his phone and when he looked at my tear-stained face, he thought I was just angry that he hadn’t waited with me in the office. I yelled, “Next time don’t leave me. It isn’t nothing. Something is wrong and I think it’s serious. I need to go for more testing – NOW!” I cried. He hugged me, apologized, and held my hand. I called my mom, I cried. I walked into the waiting room of the next office, I cried. I had to drink some disgusting dye-drink and I cried. And then I threw up. My husband rubbed my back and told me I would be okay. It wasn’t pretty. I went into the test anxious and I walked out feeling just as worried. I wish I could say I “ladied-up” and stood bravely, tear-free, throughout all the tests, but the truth is, this stuff was just plain scary.
My husband and I headed home to our two-bedroom apartment and we tried to relax. We ate, we talked, we watched TV and then the telephone rang. I almost threw up again. It was Dr. B. “Where are you?” – “Home.” – “Where’s home?” “Great Neck.” “Good sweetie, I’m in the Great Neck office – you and your husband come in so we can talk.” Was this really happening? It couldn’t be good news if we needed to go right into the doctor’s office. I knew the tests indicated something bad.
When we arrived at Dr. B’s office, we were taken right into his office and he started explaining. His words rang in my ears as I tried to process what he was saying. I gripped my husband’s hand so tightly as tears streamed down my face. He gripped back. I asked Dr. B to get my mother on speaker-phone. And so the words poured out of his mouth, echoing a staccato in my ear. “Mass the size of a grapefruit. Ten centimeters. Has cancer-like properties. Needs to be removed. Prepare for the worst case scenario – possible hysterectomy.” What? I blinked unsure that I heard him correctly. We were trying to get pregnant. Hysterectomy? Seriously? “Can we extract eggs?” – “Not enough time. If it’s cancer we need to move on it now. I’m calling my associate, the head of Gynecological Oncology at North Shore University Hospital in Manhasset.” Suddenly, the words cancer danced away from my mind and I zoned in on the hysterectomy. No babies? Ever? I was twenty-five years old and I wanted a family damn-it!
As we left the doctor’s office, my hero-in-scrubs hugged me tightly and whispered kind, supportive words in my ears. He handed me a tissue and we left the doctor’s office, our heads swirling. We took the dog for a long walk. In that moment, I wasn’t afraid of the possibility of cancer. I was afraid I would never have a baby. “Eric, promise me something.” My husband gripped my hand. “Promise me if the doctor says I needed a hysterectomy that you will immediately get us on any and all adoption lists. I want a family.” He smiled and nodded. It was a promise I made him repeat over and over again in the days leading up to surgery. It obviously wasn’t an entirely rational response to what I had just heard, but it was what my mind was willing to process at the time.
While we walked, I called my parents. We called my in-laws and told them too. Then I called my grandparents and asked if we could come over. We loaded our beloved pup into the car and took the twenty minute drive to my grandparent’s house. We talked, we cried, we laughed, we ate dinner.
The next morning, my mom and I headed to the hospital and we met with Dr. M. He was wonderful and understanding and he took his time explaining everything as we both cried. The right ovary would almost definitely need to be removed and depending on what biopsies showed once they went in, a hysterectomy might be needed too. I repeated over and over, “I want to have a baby.” He promised to be as conservative as possible and to try to preserve as much of my fertility system as possible. We left his office, my mother feeling hopeful and optimistic that things wouldn’t be as bad as we initially thought, and I left once again with the sinking pit in my stomach.
Two days later, the first week of July passing by, I was in the hospital pre-op, my family flanked at my side. My parents, grandparents, aunt, and husband were at the hospital with me and I was texting funny photos to my brother from my cubicle. I got my Heparin shot in the belly. And then it was time. I was loaded onto the gurney and wheeled to the operating room, my family trailing behind me with words of encouragement. We pit-stopped outside the actual operating room and I was left alone in the hallway, crying on the gurney, isolated and afraid.
In the operating room, they anesthesiologist tried to no avail to get an IV running into my arms. My small, shifty veins were retreating in fear. He tried nitrous gas to calm my nerves and bring my veins forward, but I started to panic because I could no longer feel my feet. The nitrous mask was quickly ripped off and the warming salt cloths began. Forty-minutes later, the IV was in, the sedative was administered, and the surgery was underway.
I awoke in recovery to visits from my family and I was in and out of consciousness. Over the course of the next day, I learned that the doctor had cut an incision tracing from above my belly-button down to my pubic bone. I was hacked open, my right ovary and tube removed, my bladder, stomach, and surrounding organs and tissue biopsied. I was in extreme pain, I felt like half of a woman, and I still had no definite answer as to whether or not I had cancer. So despite the fact that I had my left ovary and my uterus, I didn’t feel confident that I would be able to use them for baby-making, because I could still be facing the big C. I felt guilty for not being more grateful.
Over the eight days of my hospital stay, my family and friends visited or tried to visit. I had bad reactions to the pain medication and I was hallucinating, depressed, and I felt like I was suffocating. The catheter came out and was forced back in again when I couldn’t pee on my own. I was in a lot of pain, but I was pulled out of bed to walk circles around the hospital floor so that my incision and muscles would heal faster and the giant pockets of gas that were pumped into my body while I lay open and exposed on the operating table could expel faster. My mother dragged me around the floor with words of encouragement. My dad held my hand. My brother tried to visit and I begged my parents not to let him come because I didn’t want him to see me the way I was. At twenty-two years old he was not a child, but my younger brother nonetheless, and I wanted to protect him.
I couldn’t shower because of the incision and I was afraid to stay alone at night because it was difficult for me to move around on my own. My husband sat with me after work. My parents hired a night-nurse, my nurse-goddess, Phyllis, and she took care of me from 8pm-8am. I fell in love with her sweet voice, her kind words, and how she tucked me in at night. She washed my hair and gave me sponge-baths. As demoralizing as it was to be a grown woman being bathed by another, I felt so safe and loved in her care. Years later, I still had her sweet voice saved in my voicemail messages to listen to on a rough day.
During my hospital stay, there were a few bright moments of laughter. The corn muffin my parents brought me that looked like a bird’s head and beak had us hysterical laughing. My mother-in-law’s attempt to be helpful by bringing me a bagel with butter has us still laughing years later. I hadn’t eaten in days and the doctor insisted I start somewhere. I agreed to a bagel with butter and my mom asked my mother-in-law to get it for me. Happy to help, she arrived with my bagel. I took one bite and nearly threw up. “This doesn’t taste right.” Everyone in the room agreed it was just that my taste buds were off because of the medication and the fact that I hadn’t eaten in days. “Have another bite.” Another bite, another sour taste. “Seriously, this butter doesn’t taste right.” Turns out, I wasn’t crazy after-all. It was mayonnaise.
There were also scary moments. Like the Steel Magnolias moment when my mother raged her mother love and protection and went full-blown mad screaming psychotic on an intern for explaining that the large red rash growing on my leg was a staph-infection. Antibiotics needed. Intern scared. My mom angry that I contracted another problem while I was recovering. Her love was strong and powerful.
On the sixth morning of my hospital stay, the resident doctor arrived before I was finished using the bathroom, a ritual that Phyllis and I perfected so the doctors would only assess me in bed and not in the bathroom. This time though, she burst into the bathroom to check my incision. I tried to explain that I hadn’t looked at my belly yet, swollen and swathed beneath bandages and gauze, but the words wouldn’t come out fast enough and facing the mirror at 6am, I saw what was left of my stomach. It looked like a train track from hell. It was swollen, red and black, and the staples that were holding me together protruded angrily. I was horrified.
I went home to my parent’s house to recover. I needed constant help and care and my husband had to work. I spent many of my days crying, the hormonal imbalance of losing one ovary taking full control over my body and my emotions. I ached, I walked, I cried, I laughed a little. My parents forced me to get out of bed, to travel up to our summer home for some fresh-country air. I healed slowly and my mom allowed me five minutes a day to wallow in my own misery. Then it was back to eating, walking, healing, recovering. I waited three weeks for pathology to come in and I hoped and prayed that I didn’t have cancer.
When the news arrived that the mass was what they called a borderline ovarian tumor – borderline cancer, I was told that I would not need further treatment. I was instructed to see a medical oncologist to firm up the diagnosis. She agreed that removing the mass with cancer like properties would suffice without chemotherapy and she reminded me to see my surgeon on his strict schedule to make sure I stayed healthy. I was told my recovery from the surgery should take approximately six months and then we could discuss starting to build a family. The doctors suggested cancer support groups in the hospital if I needed to talk through my experience, but I didn’t feel like I belonged in those groups. My tumor was only borderline cancer. I lost a part of my reproductive system way too early in life, but I didn’t need my ovary to live. I would survive. It was hard for healthy people to grasp the scope of my fear and worry and it was hard for those suffering through chemo to take my scare seriously. I walked the borderline alone. As far as I know, they don’t make support groups for women with half their reproductive organs and I certainly never heard of a support group for women with borderline ovarian tumors.
My life drastically changed that summer. I lost my innocence. I learned that bad things could happen to me – I was not immortal. I learned that although it’s not commonly discussed or heard of, Borderline-Ovarian tumors do exist. I learned that when my doctor does an intake at my appointments, he always writes, “History of Ovarian Cancer.” I learned to be grateful for close-calls and miracles and the power of family strength, love, and support. Without the fierce love and prayer directed my way, I wouldn’t have been laughing and smiling as quickly as I was. Most importantly, I learned to be an advocate for my own health, an attribute of my post-cancer-scare self that makes me extremely proud. I don’t second guess my intuition anymore. I am highly in-tuned to my body, my health. I feel transformed. I often encourage my family and my friends to listen closely to their bodies and to not ignore the power of inner intuition.
Four months, post-op, I found out I was pregnant. Because I was hyper in-tuned to my body, I was certain a week prior to a confirmed pregnancy test. We wasted no time trying once my incision healed and the scar stopped itching. I joked that my body just needed a good cleansing before it was ready to be home to a baby for nine months. I baked my doctors cookies to say thank you. Nine months later, I gave birth to a healthy baby boy, the first of my three little boy miracles. It was years later, after my first baby was two years old that my family accidentally told me that when the doctor came out of the operating room, he felt confident that the mass was cancerous. Those weeks where I waited and prayed, my family all thought the worst. But to keep me positive and focused on healing despite the outcome, no one let on. They smiled, joked, laughed with me, and we went about regular daily life.
So now, three babies and years later, there is not a day that goes by that I don’t look at my scar, think about the surgery, mull over the what-ifs and face the fear of it all happening again. When I get sick, I get scared. I’m afraid of germs. I try to eat organic whenever possible. I cut out Parabens from my shampoos. I know a hysterectomy near age forty is an almost certain preventative possibility. But also, there is not a day that goes by that I don’t feel thankful for my health, thankful for the body that in one moment betrayed, in the next, gave me three healthy, happy little boys. Although there was a time that I felt like less of a woman with only half of my reproductive system, I know that I am more a woman now than I was before. I have the strength to believe in my own instincts, to trust my gut, and to advocate for my health and the health of those I love.