Like any good inspiring superhero, I too have an origin story.
It begins in the fall of 2006.
I was 33 years old and living what would appear, from the outside, a fantastic life. I had a husband and two beautiful children: Lily, four and Jack, 13 months. I had a great job on Wall Street making six figures and a stunning 2600 square foot loft in Brooklyn. We even had a nanny.
But here’s the thing about outward appearances: they mean nothing. In reality, I was a stressed out 300 pound hot mess in an 11 year relationship that was ending, and not amicably. I could barely keep my head on straight at work. I couldn’t afford my rent and was in six figure debt. The only time I found any sense of joy was coming home and spending a few quiet hours with my kids. Dismal days. I ate myself sick just to keep the pain at bay.
At the end of September 2006, I packed the kids up and moved home with my mother for a few weeks until I could find a suitable home for me and the kids. I eventually landed in the suburbs and day by day, month by month, I began to heal. I hired a life coach and tried to get a handle on my mental and physical health.
It worked. Four years later I owned my own home, had lost 150 pounds through diet and exercise and found a way to reconcile years of hurt with my ex-husband so we could try our best at co-parenting Lily & Jack. I was still working in finance, but had taken a 50% pay cut: more than worth it for the chance to be happy.
I kept hoping and praying that I could find a way to be closer to home for my kids; take them to school, be there for their activities, or even just be home for dinner.
They do say be careful what you wish for.
In March 2011, after losing 150 pounds over 2½ years, I was committed to clean living. Healthy food, gym seven days a week. It was during this time that the trainer I was working with encouraged me to go see a doctor to have a lump in my leg investigated. I laughed it off! You see, I am 100% asymmetrical. I have Cerebral Palsy that affects the right side of my body, so my left leg has always been bigger and more muscular. I fought against the idea of a doctor because in my mind the lump was just muscle. My left side had carried me through life and did all the work for the right. The lump was a muscle! A tribute to its 38 years of hard work.
But as I got thinner and stronger, my left leg started aching more and more. With every squat or burpee, it rebelled. The aches grew stronger and eventually my trainer refused to work with me until I saw a doctor.
On March 21, 2011 I begrudgingly went to see an orthopedic oncologist (the orthopedic surgeon had immediately referred me after an initial x-ray; this should have been the first clue something was up).
The first visit with the oncologist was very promising: he basically said that Sarcoma (soft tissue cancer) is usually lethal, and with the size of the mass I was rocking there was no way I would be alive. In summary, there was only a 2% chance it was cancer. Those sounded like good odds to me so I let him biopsy the lump and went and made appointments for some precautionary scans.
A few days later I was at the imaging center feeling fairly upbeat! I mean, the odds were ever in my favor, right? As they set me up for the chest cat scan, a typical scan done with sarcoma because of the high rate of metastasis, the upbeat feeling disappeared. I had a sinking feeling in the pit of stomach: FUCK, I have cancer. Don’t ask me why I felt that way. It was an intuition thing, a déjà vu like no other. I felt like this machine and I knew each other, and we were not friends.
Seven days later: March 28, 2011, and I am back at the oncologist’s office. They all file into the room and are very somber, not upbeat like before. That 2% chance? Turns out I was the 2%. I won the cancer lottery.
I have never won anything in my life except a writing contest in 2nd grade and an oversized glass that said “Gemini” on it at the local firehouse carnival when I was 8 years old. Now 30 years later and I’m the 2% cancer winner.
Fuuuuck. I went home, I cried and obsessed over the fact that I couldn’t make a quilt like Susan Sarandon did in Stepmom. Then I drank lots of red wine.
Exactly one week after diagnosis, it’s surgery number one. Seven pounds of cancerous yuck is removed from my left thigh and, most importantly, my leg is saved! Woohoo!
Two weeks later I’m back in the office for suture removal and they blind side me with “Oh hey remember that chest scan? We are concerned that the 2cm mass on your left lung may be cancer as well so we are scheduling you for surgery in May.” Now the lower left lobe of lung gets removed (I mean it’s an extreme weight-loss plan, but the scales don’t lie) and I’m on the home stretch. In this time I learn I’ve won another rare lottery: my sarcoma doesn’t respond to chemotherapy so I only have to endure radiation.
THIRTY-EIGHT radiation treatments later—actually wait. Can I digress a minute and talk about what a ridiculous rule follower I am? Even if there is no one else in the bagel shop I will still zig-zag through the roped off line instead of walking straight to the counter because it was put there for a reason and I must obey. So believe me when I tell you I did not miss one single session of radiation. They told me on my last day what a great patient I was, because I didn’t miss one damn session. Apparently, people miss a lot of sessions or give up completely? I didn’t even know that was an option!
Here’s the thing: radiation is hard. Not as physically hard as chemotherapy, but still: you slowly burn from the inside out. At least that’s what I did: my leg Freddie Krugered up nearly two weeks after my last treatment: I developed gnarly burn scars and lost the ability to bend my knee.
Okay. Burn scars and no knee mobility. No problem! I’m not a quitter. Well technically I am: I quit my finance job for good and went in search of something more meaningful.
I didn’t find it: I took another finance job—I know, I was disappointed in me too. Don’t worry, that job didn’t last long because I contracted cellulitis that I ignored for nearly six weeks, so I spent the first week of my employment in the hospital trying to save my leg yet again. You cannot make this stuff up! After a few months of trying to sit still in a chair (I could not sit for more then 30 minutes at a time, the pain was so bad) my new boss decided it was best if we parted ways.
It was the best gift he could have given me. During those few months of employment I was going for weekly vitamin injections to get my energy and focus up, and getting lymphatic drainage massage twice a week to try to keep my lymphedema at bay which I thought was causing the majority of my pain. After I was fired I had an epiphany: I wanted to do something else. I realized I loved the idea of massage therapy, so I enrolled in massage therapy school and began taking the first steps towards my new and rewarding career…totally forgetting I had a knee that didn’t work and a leg that rebelled against me every chance it got.
By August 2012, I had graduated with a certification in massage therapy, and had opened a practice in a town where I knew not one person and had no money to advertise (if you look up “biting off more than you can chew” in a dictionary it’s just a picture of me making a dumb face). Oddly enough I found my best work was done not with cancer-related massage therapy, but sports massage: working with people who were injured and needed to get moving again. I guess my lack of mobility made me passionate about no one ever having to live with enduring pain. I’d found my calling!
Working long hours on my feet was not easy, and there were days I would come home in quite a bit of pain, but a hot shower and a good night’s rest usually took care of the worst of it. By 2014 I was two years into successfully running my own practice, working with a very kind chiropractor who gave me a leg up (oh, the irony).
On December 15, 2014, I was having a bad body day. My leg was hurting and I was having severe back pain. It was nothing I couldn’t handle as long as I could get home and get some rest, but it was a struggle. I saw nine clients in a row that day, and was just getting ready to head out the door. I threw my big bag of dirty massage table sheets over my shoulder and SNAP!
I both heard it and felt it. I panicked, but refused to look down. I took some deep breaths and did an internal assessment, trying to sense what had happened. My knee felt weird but was otherwise okay. Deep breaths. My hip was moving fine. Deep breaths. My leg was…bad. Very bad. Deep breaths. I had somehow shattered my leg, mid-femur. Three goddamn glasses of milk per day as per my annoying mother and father and 41 years later I still break a bone!
I was so lucky that night, there were people there to help me. I was usually the last one to leave the building, all alone. I had help that night and for that I am grateful.
So what do I do in times of crisis? I make jokes and boss people around. Kids sorted: check. Fiancé notified: check. Flirting with the EMTs, telling them if they’re gonna cut me out of my new jeans they at least take me to dinner first: check. (PS you boys still owe me a pair of Tommy Hilfigers)
By a weird twist of fate, my NYC oncologist had recently left the big city for a new job in New Jersey and I end up at his hospital. I had crap insurance that barely paid but he agrees to rod my leg and see me for a follow up because he knows my history. Two weeks later, on Christmas Eve, my rod is in place and my attitude phasers are set to “positive!”, and I’m in his office being told he’s not overly optimistic that I will generate bone, that my leg may never heal, and that off the record I probably received too much radiation. WTF? All I could do in that moment was cry.
In 2011, my radiation doctor told me radiation had changed. He said it was targeted, it was different and that my side effects were going to be minimal. He laughed at me when I complained of nausea and exhaustion, saying it was all in my head. He said burns would be nonexistent, that I would only have some minor skin irritation. He certainly never mentioned that my leg might snap one day under the weight of a cloth bag full of bedsheets. He also stopped returning my calls once my treatment was finished and my insurance was gone. That’s right folks, after MY COBRA coverage ran out I was no longer insurable because of my PRE-EXSITING CONDITION!! He didn’t return calls until another physician called him when I was admitted for cellulitis. This is what happens to cancer patients, they are often forgotten when their treatment is complete. They are often forgotten when two and half years later they are hanging onto a filing cabinet with a shattered femur, trying to avoid going into shock.
Okay, so I’ve been dealt a tough hand, but I persevere and return to work eight weeks later. Four weeks after that I break my screws (not nearly as sexy as it sounds) and I’m laid out for five more months. I finally convince the orthopedic surgeon to replace my screws, knowing full well that it could lead to infection and amputation, BUT I still haven’t tried all my options for making bone so we need to give me another 6-12 months.
2015 is spent waiting and hoping and hobbling.
With new screws in place, I take it easy and wait an additional five months before I return to work. On January 2016 I FINALLY RETURN TO WORK! I work away happily until June when something starts to feel “not right” with my leg. And it’s been that way ever since.
I’m still not sure what happened but I have moved slower since then and after trying homeopathic, ultrasound, nutritional and some experimental options I have yet to make bone. My leg, for all intents and purposes, is still broken two years later.
By late 2016 I realize that amputation is most likely inevitable. I had thought about this option many times but now it was going to be my reality. This may sound like it was an easy conclusion to come to, but it still took me eight months to make the appointment.
But finally I did.
On March 21, 2017, six years to the day that I had my first appointment that led to me discovering I had cancer, I took the first step toward freedom.
NEXT WEEK: The Dates (Or: How Facebook Remembers All: The Good, The Bad, and the Occasional Ex-Boyfriend)