When Life Hands You Cancer Lemons….
I have always wanted to a be a writer. When I was seven, I wrote a story about a family of beavers who lived in a cozy beaver den and faced real world problems like divorce and alcoholism. Coincidentally, my parents were on the brink of divorce at the time and my mother, having fallen off one too many bar stools, was well on her way to rehab.
When I showed the story to her she looked at me with a smirk and asked, “Does your beaver where clothes and host Tupperware parties?”
Clearly, I would have to research my target audience’s definition of “beaver” before publication.
When I was eight, I decided to switch gears and try my hand at poetry. I wrote a long poem entitled, “I Ate a Worm Today.” The poem told the story of how I had eaten a worm, which then multiplied in my stomach and eventually killed me.
When I showed it to my mother she pried my mouth open to inspect while she yelled, “You better not be eating worms, or bugs, or dirt, or anymore of that sour grass shit you and your brother are always gnawing on from under the porch.”
In my defense, I never ate worms or bugs or dirt. I’ll cop to the sour grass.
When I was nine, my fourth grade class was given an assignment to write a story based on an illustration from the book“The Mysteries of Harris Burdick.” Most of the kids in my class were inspired by their chosen pictures to write sweet stories about noble adventures filled with heroes and fairies and magic.
I based my story on the image of a suburban house that appeared as if it was being lifted into the air by a mysterious glow. There was nothing sweet about it. It was a horror story about the family inside becoming possessed by an unknown evil that forced them to turn cannibal and systematically pick each other off.
My teacher seemed both impressed and horrified by the story. When my mother was given a copy at the next parent-teacher conference, she tossed it into my lap upon returning home and exclaimed, “What the hell is wrong with you?”
In high school, I took a journalism class I was admittedly inspired to take because I yearned for the excitement of the news room portrayed by Brandon Walsh and Andrea Zuckerman of Beverly Hills 90210. “The Beverly Blaze” tackled ground breaking stories about steroid use by the track team, condom distribution and the conspiracy behind a legacy key that almost got Steve Sanders booted from the halls of West Beverly.
I couldn’t wait to blow the doors off a major story of my own. Unfortunately for me, my high school paper turned out to be more like a pamphlet and the only exciting thing about it was the crossword puzzle. My dreams of winning a high school journalism award, (which would then reveal my out of district address, forcing me to move in with my grandma in a rent controlled apartment in Beverly Hills, even though I never lived out of District, or in Beverly Hills), were gone likeBrenda Walsh’s virginity at the West Beverly Spring Dance. When I confided this disappointment to my mother she stated, “I told you to try out for cheerleading instead.”
My freshman year of college, my English professor asked my class to write a story about something prolific that happened in our childhood that forever changed us. Since the statute of limitations had probably not run it’s course on most of the things that happened to me in my childhood and because I wasn’t interested in a too little, too late Social Services investigation, I chose not to share anything factual.
Instead I made up a story about the untimely death of a lifelong childhood friend. It was a tragic piece of non-fiction that nearly brought my professor to tears. Afterwards she proclaimed, “I think you’re going to be a writer someday!”
However, this proclamation was challenged by my communications professor who read through my first ever college research paper and then asked if I was failing English.
Needless to say, my dream of becoming a writer was nothing more than a seed that was never watered; fleetingly fertilized, but promptly trampled at the first spark of life. Eventually, I gave up on the idea, tossed it into my “Bucket List” and my life went on in what often felt like a haphazard, nonsensical manner as I tried to figure out exactly what I wanted to do with it.
I graduated from college, and in the early years that followed, I tested out a few career options and a starter marriage, all of which I promptly discarded at the first inkling I was not on the right path. Eventually though, I started to figure some things out. I moved to a new city, remarried, became a step-mom, settled firmly into a career I could live with, did a little bit of traveling and just genuinely enjoyed all the many blessings in my life.
Just when I thought it couldn’t get any better, it did. On July 14, 2011, a home pregnancy test, OK, three home pregnancy tests, revealed I was pregnant. The news on the stick brought a flood of emotions. I was beyond happy and excited to share the news with everyone I knew, three month rule be damned, but I was also a little apprehensive. Earlier that year, I had miscarried during the eighth week of my first pregnancy, a fact discovered during my first ultrasound when the heart beat of my baby couldn’t be detected.
Instead of leaving my first prenatal appointment with a black and white photograph of my little blueberry to share with family and friends, I left clutching a pamphlet explaining the Dilation and Curettage procedure that would “remove the contents of my uterus.” I was devastated in a way I was not prepared for and I couldn’t immediately commit to the procedure.
I told myself it was possible the ultrasound technician could be wrong. Maybe she needed corrective lenses and a hearing aid. Maybe she got her degree from a college she saw on television with low admission standards.
For the next several weeks, I dodged my OB’s attempts to schedule the procedure while I researched misdiagnoses of miscarriage and convinced myself it was possible my baby was just hiding in my inverted uterus. Ultimately, I was wrong. Six weeks and a different tech later, a second ultrasound failed to detect a heartbeat or any growth. I had to accept it was not meant to be.
Now, here I was again, five months later, staring at the pink double lines in the pregnancy test results window feeling cautiously optimistic. On August 8, 2011, I had my first ultrasound and this time, I could not only see the tiny flicker of my baby’s heartbeat on the screen, but I was able to hear it too. It was an amazing moment and to say that I was simply excited would be an understatement.
I was so pumped to be a mom and so determined to provide the best, most accommodating uterus for my growing little one that I had already begun to spruce it up. I had been taking prenatal vitamins for months and I had given up my caffeine laced breakfasts for food I actually had to chew. By the time my pregnancy was confirmed, I was four months caffeine sober.
After I became an official mommy-to-be, my prenatal work kicked up a notch. Despite my irrational phobia of full service gas stations, I sought them out so as not to expose my baby to harmful gasoline fumes.
If I used a microwave, I positioned myself so that my belly was not directly facing it. As soon as I pushed start, I promptly vacated the area and retrieved my food only after the timer had gone off and an acceptable amount of time had passed for the nuclear charged particles in my food to stop bouncing around so as not to radiate my baby.
Instead of driving 80mph down the freeway, steering with my knee so my hands were free to text and update my Facebook status, I abided by all traffic laws and became a strictly ten and two kind of girl.
I created a baby playlist for my iPod and filled it with soothing classical music and piano renditions of lullabies and G-rated tunes like Louis Armstrong’s, “It’s a Wonderful World.” I listened only to this playlist throughout my pregnancy, firm in my belief that by avoiding profanity laced pop tunes I would be ensuring that my baby’s first word would not be something like, “shit.”
I also stopped watching my favorite true crime documentaries on TV, because I was afraid exposing my unborn baby to such information might turn him into a serial killer. The list goes on.
Some might say I was being a bit paranoid, butI had good reason to be so obsessive. My own mother’s parenting skills had been more akin to Joan Crawford’s than Carol Brady’s so it’s quite possible I spent my time in the womb floating in a sea of Budweiser. Therefore, I was determined that my baby would incubate in the Rolls Royce of wombs rather than hanging on for dear life in the back of an El Camino.
As the first three months of my pregnancy ticked by, my efforts seemed to be paying off. At each of my prenatal appointments, my baby’s heartbeat was strong, his growth normal and I became more and more secure in the fact that this would be a healthy, normal pregnancy.
And then, the shit hit the fan.
At approximately 13 weeks pregnant, I woke up one morning, went into the bathroom, looked in the mirror and was horrified to see the Stay Puff Marshmallow Man staring back at me.
My neck and face had swollen to seemingly three times their normal size. The veins in my forehead, across my chest and down my left arm were protruding so much, I could almost pinch them.
My skin looked slightly purpleand when I bent over the sink to brush my teeth, I felt a surge of pressure force its way into my head as if it might just pop right off my shoulders. In a word…I was hideous.
When I asked my husband to assess my appearance, he said, “Yes, you look a little swollen, but pregnant women swell, right?”
It didn’t look like just a little swelling to me….it looked like a rapidly developing case of Elephantiasis, but perhaps I was over exaggerating. I had never been twelve weeks pregnant before, so really, what the hell did I know? Plus, I’d read in my pregnancy Bible, “What to Expect When You’re Expecting,” pregnant women do indeed swell. I didn’t recall much discussion devoted to extreme neck and face swelling, but I reasoned that everyone experiences pregnancy differently.
Thirty minutes later when I retreated to the bathroom to throw up my breakfast, (YAY morning sickness), I studied myself again in the mirror as I washed vomit backsplash off my face. I shuddered at my appearance. I may have been a novice, but my intuition told me that this couldn’t possibly be normal. I wasn’t even sporting a baby bump yet. If I hadn’t been spending 85% of my time in the bathroom, (even that wasn’t much of a clue since I could have just been bulimic or stricken with explosive diarrhea), no one would have even suspected I was pregnant.
I brought up the question of my newly developed deformity several more times that morning, but my husband continued to insist that although I looked a little puffy, it wasn’t extreme and he was sure I was fine. I was sure he must have had his contacts in backwards, or was just horribly unobservant and had never actually seen me before.
Eventually, my worry got the better of me and I called my doctor who agreed that the symptoms I was describing didn’t sound all that great. It was a holiday weekend and we were away at our lake house, so he suggested I head over to the local emergency room to get checked out.
Shortly after settling into an exam room at the small, local, community hospital, I was amused when a child came in and began to exam me.
How cute, I thought as I watched him play with his stethoscope and start ordering things like blood work and chest x-rays. It must be “bring your child to work day” here at the hospital.
Alas, it was not. Dr. ER was a real life, medical school graduate, which I officially confirmed after leaving the hospital when I looked up his credentials online and found out he was actually in his late 20’s and not his early teens as I had suspected. After completing a thorough examination he looked at me, a bit baffled and said, “I don’t know what’s wrong with you.”
Hmmm, I thought to myself as I eyed him suspiciously. Is he suggesting I’m some sort of medical mystery, or is he perhaps too young to wager a reasonable diagnosis? Before I could ask if someone with a few more miles on their stethoscope was available for consultation, Doogie Howser, MD followed up his statement by indicating that it was possible, although rare and probably not the case, that I might have developed a blood clot somewhere in my upper body.
Unfortunately, the community hospital didn’t have the ultrasound technology necessary to make such a diagnosis, so I was directed to the main campus for further testing.
On the way there, I debated to myself whether or not it really made sense to investigate this any further. I mean, come on, everyone knows that if you get a blood clot, it promptly travels to your heart or lungs, explodes and you die. I obviously wasn’t dead.
However, the ultrasound technician at the hospital was waiting over time for my arrival and it seemed rude to stand her up, especially on a holiday weekend, so despite my skepticism, I went. Good thing too, because it turned out I did indeed have a blood clot in my subclavian and apparently it’s not a condition that results in sudden death. Fortunately.
“It’s really not a big deal.” The Physician Assistant assured me as we discussed the condition and treatment plan. “You’ll just need to give yourself a blood thinner injection, every day, twice a day, in the stomach, for the rest of your pregnancy. You and your baby will be just fine though!”
“I’m sorry, what?” I asked skeptically. “What kind of sadistic bastard are you?!” (This last part I said in my head. If he truly was a sadistic bastard, calling him out while he was holding a dripping syringe in his hand seemed foolish).
But seriously though, stabbing myself in the stomach twice a day, seemed a bit counterproductive to all the work I had been doing. What if I poked my baby’s eyes out? Or punctured an ear drum? This seemed to be the sort of thing that would result in social services overseeing my pregnancy or perhaps to my giving birth in a jail cell.
Turns out, there’s quite a lot of skin and various layers of other things protecting a baby in the womb. So, after a quick lesson on injection technique and proper sharps disposal, I was on my way with a bag full of syringes and a bright red sharps container.
Over the next few months, I diligently followed instructions and never missed an injection. I saw several specialists including a Hematologist, a high risk Obstetrician and a Vascular Surgeon who was “just curious” and wanted to “have a look” like I was some sort of carnival attraction.
Each of these visits, the later being the exception, was an attempt to determine whether or not I had some sort of genetic disorder that made me predisposed to clotting. After collecting about two gallons of blood for testing, my doctors were unable to find anything wrong with me and the general consensus was this was just a rare side effect I was having to pregnancy.
However, despite properly treating the blood clot, I wasn’t getting any better and new symptoms began to develop. Now, in addition to the ever present swelling, I had begun to experience extreme shortness of breath following simple activities like, walking from the living room to the kitchen, getting dressed, chewing gum.
Pretty much any activity that required movement was a challenge. Also, although I was so exhausted I was practically delirious some days, I couldn’t sleep through the night. When I was sleeping, I began to have dreams that were so bizarre, I thought I should write them down and share them with a therapist because I was convinced they were a sign I was going bat shit crazy and might at any moment, snap and possibly kill my husband and then eat our dog.
As these new symptoms developed, I shared them with my Obstetrician who, in turn, reached out to her peers in the medical community for advice. My OB had never had a patient with my issue before. She was used to treating nice, normal, status quo type patients, not the kind of stuff you would only expect to see if you treated patients who lived beside a nuclear power plant.
All of the medical professionals Dr. OB discussed my case with indicated that with a condition like mine, these symptoms were really not that unusual and may not go away until after my baby was born. I had no idea how I would find the energy to make it all the way through my pregnancy. I was mentally and physically exhausted with no reprieve in sight.
Then, in late October, 2011, approximately three months after the whole ordeal had begun, I had an ultrasound that revealed we were having a baby boy! My husband and I were thrilled and so proud of our baby who was enduring my medical mystery with flying colors. He was thriving and perfect and seemed oblivious to all the craziness of the outside world. For this, I was grateful and determined to just suck it up.
After the ultrasound, we followed up with Dr. OB for our regular prenatal check- up and to again discuss my growing list of issues.
My doctor planned to reach out to a few more resources who might be able to shed some light on what was happening to me. She cautioned that if they also agreed this was relatively normal for someone with my condition, that we should just accept it and focus on getting me through the rest of my pregnancy as comfortably as possible.
A few days later, Dr. OB called to inform me that she had spoken to a high risk Obstetrician at one of our cities best hospitals, who informed her that although it was reasonable for some of the symptoms I was experiencing to continue throughout my pregnancy, they shouldn’t be getting worse. He suggested I get a chest x-ray and depending on the results, a CT scan of my chest and neck.
The following day, I had the chest x-ray. My doctor called later that afternoon to advise that the radiologist who reviewed the x-ray indicated he saw some “fullness,” whatever that meant, I was too tired to ask many questions, but he felt it was related to the blood clot. Dr. OB advised that I should go ahead and have the CT scan which had already been scheduled for the very next day.
After the CT scan, the tech who snapped the images, came into the room, patted my arm with a mournful smile and said “Doing OK, honey?”
“Sure, I’m fine.” I said, a bit confused and somewhat alarmed by this sudden display of sensitivity as it was a notable switch from the detached indifference I had been greeted with when I had first arrived.
My suspicion grew when she followed up her question by saying, “Well, good, I’m glad you’re doing OK honey. You know, we’re only doing this so we can get you back to being nice and strong, so you can go ahead and have that baby!” and then she escorted me to the door of the imaging room and watched me walk down the long hallway toward the exit with a sad, foreboding expression.
I briefly wondered if this is what a dog felt like on its way to being euthanized; confused but warmed by the unexpected tenderness of a stranger, unknowingly taking its final walk down the green mile.
I shrugged off my suspicions though and headed off to work. I had been in my office for about an hour when I got a call from Dr. OB.
Dr. OB: “So, I got the results of your CT scan,” she said slowly, “and it appears there’s a mass in your chest. Now, some masses are problematic and some aren’t, so we need to do a little more research to figure out what this is.”
Me: “Ok,” no alarm to my tone. After all, she had said mass, not tumor, right?
Dr. OB: “You’ll be getting a call from the High Risk OB department at the hospital,” she continued, “They want to schedule some work-ups. You’ll also be getting a call from the Oncology department. They want to schedule some work-ups as well.”
It was at this moment I may or may not, (I’m too much of a lady to say), have shit my pants.
Me: “Oncology?” I practically choked on the word. Clearly, my grasp of medical knowledge to this point had been shoddy at best, but I knew what this word meant; cancer.
Dr. OB: “Yes.”
Dr. OB: “You should be prepared, because I think they are going to want to admit you.”
Me, to myself: “Where is that loud ringing coming from?”
Dr. OB: “I know this must be very scary, but they can expedite the work up’s and a diagnosis if you’re in-patient. and it’s important that we figure this out sooner, rather than later.”
Me, to myself: “Why is it suddenly so hot in here and where the hell is that damn ringing coming from?”
Dr. OB: “Are you still there?”
Me: “Yeah, I’m here.” I managed to choke out quietly. I frantically wracked my brain for a sarcastic quip I could contribute to the conversation….as I prefer to do in any situation that makes me uncomfortable or scared. “Why don’t I know any good cancer jokes?” I silently chastised myself.
The truth was, in that moment, I could find no humor in the message I was being given, or the situation I suddenly found myself in. All I could register was a mixture of disbelief and shock. This didn’t make any sense.
Why would I need an Oncologist? She said mass, not tumor!
Pregnant people don’t get cancer!
No one really thought I had cancer, did they?
Turns out, they did and they were right and a tumor by any other name, is still a tumor.
In the hours, weeks, months and eventual years that followed, a lot would happen to me. At the end of it all, I would reevaluate my bucket list and other pieces of my life. This blog is a part of that evaluation….writing because I love it, even if no one else ever reads it. But there was a lot of other stuff that would have to happen first.
I would show up at the hospital as directed and be admitted to the Oncology department.
In the span of only a few hours, I would learn that I could have any number of cancer types. That the survival rates among my possible diagnoses varied from as low as ten-percent to as high as eighty-percent.
I would be told I might have to choose between my son or myself….or I could just take us both down.
My husband would sleep on a small couch in my hospital room my entire stay and when I told him I was scared and I didn’t want to die and I didn’t want our son to die, he would look me straight in the eyes and with all the conviction in the world, he would say, “There will be no dying. You can do this.”
My dad and my brother and my brother’s partner would get in a car and drive all night, abandoning work and other responsibilities to be there with me.
I would meet my unbelievably incredible, brilliant, kind and compassionate team of doctors who would take care of me and make me feel like I was the only patient in the world.
I would have a needle biopsy that would reveal I had the best possible diagnoses that could be pulled from the cancer grab bag…Stage 2, Primary Mediastinal Large B-Cell Lymphoma.
I would be ecstatically surprised to learn that I could safely begin chemotherapy and continue to carry my son.
I would begin my prescribed six cycles of RCHOP, my chemo cocktail, and my hair would begin to fall out in chunks about six weeks after my first treatment.
I would head over to a local salon with my husband in tow, where I would tell the innocent woman who shaved my head, that I had to do it because I lost a bet with my husband and he was being really mean about the whole thing.
I would see my completely bald head for the first time and cry almost as hard as I had cried when I was told I had cancer and my husband would tell me I was still his beautiful wife.
My best friend would fly to see me and when she saw me for the first time, she would start crying and exclaim, “I was so afraid you were going to look like Bella Swan!” and we would laugh so hard I would pee my pants…which wouldn’t be the first or last time that happened during my pregnancy…or since.
She would come wig shopping with me and I would try on every style and shade, the more awful the better and we would laugh some more.
I would find a lot of opportunities and reasons to laugh.
Five chemo cycles in and exactly one week from my final treatment, my water would break at home and I would arrive at the hospital wearing a Super Man night-time diaper belonging to one of my step-children.
I would ask the nurse checking me out if this meant they were going to plug me up and put me on bed-rest and she would look at me quizzically and say, “No….it means you aren’t leaving here without a baby.”
I would have to deliver my son without the benefit of an epidural (long story) and at one point, I would think to myself, “I would sucker punch an eight-year-old to make this stop,” but approximately sixteen hours after it started, my son would be born and seeing him for the first time, would be the most amazing moment and my best accomplishment.
In the hours after he was born, I would remember something one of the physicians who treated me during my initial hospital stay had said:
“It’s quite possible your son saved your life.”
She would explain that most people with my particular type of cancer, a rare and dodgy type, aren’t typically diagnosed until they are in much later stages of the disease, making it more difficult to treat and the survival rate much lower than the eighty-percent I was given. Because I was pregnant and under the care of my OB, my symptoms were more prevalent than they may have otherwise been, leading to an early diagnosis.
As I sat with my son in his hospital room on the NICU, I would tell him thank you as I have done nearly every day since.
Today is his third birthday. So, Happy Birthday, Little Man! You are all the most wonderful things….and THANK YOU!