Smile! You’re on Cancer Candid Camera

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Was diagnosed with cancer (note my swollen belly above. That’s me sucking in. Full of a big tumor and 3 liters of fluid)

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So my friends and I said “eff it” and had my 25th birthday early and threw a rager. Here are the tamer shots.

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I went under the knife on December 4, 2012 for the first of several surgeries. I had a total abdominal hysterectomy. Luckily I had my big brother by my side with my parents before the surgery. In the months following I was cut open a few more times to insert an intraperitenial port and a central line. I learned to embrace the beauty of scars.

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Scars are nothing in comparison to the torture that is the NG tube. WORST EVER.

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A few weeks after surgery the chemo started at Yale.

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In preparation for the impending doom of losing my hair, my mom and I headed to the salon and had some fun trying on wigs and trimming my long locks into something more manageable. I also learned that blondes do not have more fun. Yikes.

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I was reminded by many wonderful friends that “bald is beautiful”

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But that didn’t stop my family and I from having some fun with a few novelty “cranial prosthesis”

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It also didn’t stop me from making my friends try on my wigs for my amusement (p.s. they are all red heads/blondes)

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I rocked a lot of hats after I lost my hair. I grappled with my perceived stigmatization of “cancer patient” without my hair.

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But eventually I put it out into the world.

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Sometimes in the midst of physical and emotional pain and the uncertainty of my condition I got scared. Luckily I had the support of many to keep me afloat. I’m smart to have kept some evidence.

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Sometimes the advice came from the universe.

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Nothing compares to the wisdom of your parents.

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Even on Valentines Day in the hospital I got by with a little help from my friends. Stack was the BEST valentines date…

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…and chemo date…

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…and St. Patricks date.

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When my immune system was compromised, even my tiniest of friends found a way to cheer me up!

Regardless of chemo, surgeries, and general unpleasantness my friends, family and I were determined to have fun…

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And with the fun came some rewarding hard work further fueling me to still pursue my dream of finishing a half-marathon. For now, a messy 5k will do…

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Thank goodness I worked so hard to gain my weight and strength back because I had some weddings to boogie at!

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I also didn’t have any time for cancer because I needed to go on vacation to California to see my brother…

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I also had to jet set to Wisconsin for an Australia 2009 reunion!

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Where I learned how to drive a jet ski and was showered with paper cranes ūüôā

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Cancer had to go on the back burner because I also had to casually hang out with New Politics and The Mowgli’s…

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The most important “rockstar” I met all year was hands down Eff Leukemia’s own Tony Lanza. He kicked Leukemia this year and after many months of being “cancer pen pals” we finally met! Best day.

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But nothing was better than my biggest accomplishment of the year:

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Finding out that I was cancer free and announcing it to the world (despite Chris showing up late and ruining everything hehe)

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And as the result of such good care from my parents, brother, oncologists, surgeons, nurses, PA’s, family, friends, colleagues, ¬†and strangers I am here today. Clearly not many of my darker times were documented. It wasn’t all sunshine but I am really lucky to have captured so many moments that were wonderful. My heart is very full right now.

THANK YOU from the bottom of my heart to everyone that ever cared, worried, sent love and support. It’s been a hell of a year.

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Diagnosis-aversary: One year later!

It is difficult for me to wrap my head around the fact that exactly one year ago today I was sitting in a hospital bed. A doctor looked me dead in the eye and told me that the “suspicious mass” found in my abdomen the day prior was a 12 centimeter malignant tumor. I looked at my parents stunned and watched their hearts shatter. In that moment it killed me more to see the fear in my parent’s eyes more than the diagnosis itself. No 24 year old should have to face their own mortality but no parent should EVER have to hear that their child is dying.

In the matter of 48 hours I went from being diagnosed with “just gas, you’re fine” to “You have cancer.” We had so many questions that the doctors couldn’t provide answers for. No one told me that I would die, but no one could answer when we asked if I would live.

With uncertainty like that  you can understand how I am completely dumbfounded by the fact that today, 365 days later, I am sitting in my favorite coffee shop by the window, eating a bagel and sipping on a hazelnut latte. A year prior I was faced with the predicament of having chemo first or surgery first. Today, my most frightening decision was whether I was going to order a spinach or cinnamon-raison bagel (totally went with spinach).

Sometimes I go back in my head and think about the more difficult times. The pure physical exhaustion. I think back to vomiting, abdominal pain, falling down, scar tissue forming and breaking up, NG tubes, needles, that nauseating hospital smell, the way my scalp ached as my hair suddenly fell out, ¬†the beeping of the pumps on a chemo IV, the unpredictability of my bowels (ask any cancer patient and they will tell you what’s up)…this list is endless. I also think of the moments where I was immersed in depression and feelings of helplessness. These feelings were especially pervasive when facing the ¬†disappointment and angst of not being able to bear my own biological children.

Sometimes I will have flashbacks when I’m driving home from work or trying to get to sleep of some of the darker times. Those raw emotions still linger and will be slow to heal. Even though it’s physically over, it will never be the same emotionally.

Despite these dark, lingering, memories, cancer gave me the ability to make very pure meaningful connections with others in a way that I don’t think I could have otherwise. I felt unmatched love, unmatched kindness, unmatched friendship. This came from family, old friends, new friends, colleagues, strangers for no other reason than we are all part of the human condition. When you are facing your own mortality, not much else matters. The petty bullshit suddenly seems a little less important. It’s not to say that I don’t have my moments. I still sweat the small stuff but perhaps not to the degree that I did previously.

Whenever I talk to other people about my experience I often hear: “I don’t know how you did it! I couldn’t have.” Here is a little secret. You could. I hope you never do, but you could. The mind-body connection is incredibly powerful and with a lot of science, a lot of luck, and a lot of love it’s possible.

One very important message that I want to put out there is that “survivor” is a funny word. I use it for lack of a better term but it is an awkward label to embrace because it implies that I did something that those who died from this condition did not. I’m not a special and unique snow flake. I just did what I was told to do to the best of my ability. There are people that smoke, drink, piss and moan all the way through their cancer and live for years. There are others that have great attitudes, eat organic, meditate, exercise, and embrace emotional support who pass quickly. When it comes down to it, it’s just science and dumb luck. If ever faced with cancer, you do the best you can, to the best of your ability given your constraints and leave the outcome to a power greater than yourself.

I am lucky to be here, I am grateful to be alive and for first time in my life, I am truly happy to be me.

Do you feel the love? I feel the love. Come on, come on…

Exactly 9 months ago today it was Valentines Day. But not the hearts, flowers and all the bullshit kind of day. It was more like a “12” on the 1-10 pain scale, intestinal obstruction, new chemo at a new hospital kind of day. I could say with certainty that it falls in my top five worst days of all time.

It was my third round of chemo but my first infusion at Women & Infant’s hospital. My roommate, Kelly, was kind enough to bring me in early that day for an emergency 7am visit to the doctor having been up all night with excruciating pain in my abdomen. Not the best way to start a day of chemo (at a new facility no less). Little did I know that this emergency visit would lead to a ten day stint in the hospital (many of those days being NPO). Luckily my sweet Stacey volunteered to be my Valentines date and stayed with me the entire night when I got admitted.

I’m jumping ahead of myself. I swear I have a point here. Back to the chemo infusion-

I get sat in a little room with two recliners and my chemo nurse walks in and introduces herself as Sheila. She’s tall and very eccentric looking. Edgy, multi-colored hair and a laid back but confident and comforting approach. I’m going to be quite honest with you, the actual infusion was a skosh fuzzy because Sheila hooked me up with a solid dose of pain killers. Despite my hazy memories of the actual few hours Sheila took care of me, I’m going to infer that she did a great job.

Sheila continued to see me almost weekly. We got into the “chemo rhythm”. She knew I liked to check my work email before my Benedryl nappy-time cocktail so she would always save that for last. Her enthusiasm for my CA-125 improvements matched my own and when times were not-go-great she was always honest but reassuring. I don’t know if it was fate or luck but I bagged myself the perfect chemo nurse.

As the weeks went on our chemo routine turned into a sincere friendship. I knew this with certainty when the girl waited an hour after her shift was over to find out my CT scan results on a FRIDAY and proceeded to invite me to the bar, buy me a beer, and tell me that I was cancer free.

Nine months later, Sheila and I are together again but not for a port saline flush or further treatment. We’re at a concert, throwing back a beer, and enjoying some great bands. How appropriate that exactly nine months later we’re enjoying a high energy, upbeat, evening out together. Shocking considering that she was actually poisoning me for many of those months…

It’s even more appropriate that we’re seeing The Mowgli’s. A band I admittedly only got to hear of this past year but one of their more mainstream songs “San Francisco” kept me upbeat during some really dark days. Watch this and don’t smile. I dare you (you won’t be able to)

I must admit that I wrote everything above this link prior to going out tonight. I was just so excited to see some great bands live, that was enough for me. Never did I imagine what would happen after the show. Sheila remembered me saying that San Francisco was a meaningful song for me and secretly arranged with her friend from the radio station, 95.5 WBRU, for me to meet The Mowgli’s!

I honestly thought we were just going to meet them on the fly because her friend worked for the radio station hosting the concert. It turns out everyone, including the band, has known about this for weeks and they even autographed a bunch of gifts and put it in a WBRU gift bag for me! We hung out for a while after the show and I was quite literally shaking. It may have been a combination of being starstruck plus them taking the time to be so nice to me when they really did not have to be at all. We hung out, talked, ate fortune cookies, and I even met their dogs. I couldn’t have been happier and more overwhelmed.

More than anything I am amazed at Sheila for knowing how meaningful this would be and making the arrangements just to put a smile on my face. She is remarkable. There is a special place in heaven for a person like Sheila Enderby.

Check it out!

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I can now go to sleep a VERY honored and happy girl.

Create what you need (Part II)

A problem that I have always had as long as I can remember is asking for something that I want/need. I couldn’t tell you why. In childhood I would see something at a store and just hope that my mom telepathically knew. Oddly enough my mama does have what I believe to be telepathy and can detect me in “crisis mode” from hundreds of miles away. WEIRD. (It’s a far better skill than knowing what barbie doll I liked in the store.)

In getting sick I was pretty much forced to tell people what I wanted or needed because for several months I was on “independence probation”. If I wanted to go from my bedroom to the living room, I needed my Dad to spot me so I didn’t tumble head first down the stairs (and I’ll be damned if I tumble and don’t stick the landing!). Now that I am back to normalcy and can do everything that I could before I got sick, I need to remember that the same rules apply. I must ask for what I need and what I want when it comes to my emotional wellbeing. This ties back to my last few entries about creating what you need. I am pleased to say that in a quest to meet other young people with similar stories, I not only helped to create a Providence meet-up, but it became an official Stupid Cancer Meet Up on the http://www.stupidcancer.org website!! So legitimate.

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All I did was put my feelers out in the right forum and in a matter of 9 days the event came to be. I am really excited to meet other likeminded people with similar life experience. I think it will be a healthy step in the right direction in adapting to me new normal. I am glad that I asked for what I needed. (Shout out to Jocelyn that helped to make this an official event! And for being doctors appointments being spaced out to every 4 months!)

Speaking of new normal…

Many of you have told me that you have been following my friend Tony through his journey through http://effleukemia.com/

He just updated his blog for the first time in a few months and I am so proud to share that he finished in 14th for the NYC MS Ride and has officially registered for the 2014 NYC Triathlon. I am so proud of how far he has come in the midst of such dark times. All I have to say is Tony Lanza gives ZERO effs.