Quick Update

I will write in more detail, hopefully soon. I just have not had the energy as of yet.

The stem cell transplant (day 0) went smoothly and I have been recovering since. Not unexpected, I was running a fever in the clinic on Friday and was admitted as an inpatient at Smilow. I've received some blood transfusions and have been getting Neupogen shots every day to help my blood counts recover later this week.

I am very exhausted, not able to eat much, and not able to have visitors besides my immediate caregivers (Craig and the 'rents) or leave the room. My blood counts are nonexistent so so is my pep. However, I am very positive and hopeful for a full recovery. It is anticipated that I'll start to make a turn around on Wednesday (Day +8). Until then, I'm digging deeper and deeper and keeping my focus on a healthy, new start.

Thanks for all the positive vibes and support.

They Do Exist

Tuesday night I felt understood, accepted, befriended, appreciated, like I belonged. And I can only hope that's how everyone else felt as well. It was the culmination of a project I have been working on with my friends at the Helen & Harry Gray Cancer Center (where I am treated and at the hospital that I work at) and I'm Too Young for This!, a national foundation devoted to empowering young adults with cancer.

Throughout my entire cancer experience I have met one woman in the flesh with cancer under the age of 40. No matter what age you are, cancer can be hard to cope with and having no one else in my peer group to turn to didn't help matters. You're not supposed to be sick with a potentially deadly disease at the age of 27 - it just doesn't make sense and it's very hard when everyone stares at you with pity and wonder marveling at how young you are and why you're hooked up to a chemo drip.

I've found online communities to be extremely beneficial during all of this - especially i2y.org because the language is catered to me, it's full of humor, yet also vitally important information, but it's delivered in a way that's not so ominous and straight-edged as many other cancer support sites are. I've thoroughly enjoyed the Monday night "Stupid Cancer Show" online and its connected me with some very informative factoids and resources. I've connected with other young adults through their blogs and social networking sites, but again, never met someone like me (an otherwise healthy twentysomething who is still living her life with cancer) in person.

So, I approached my friend Val who works at the Cancer Center and asked if we could put something together. She also knew about i2y and the "Stupid Cancer Happy Hours" that they host across the country and was all for doing one in Hartford - so was the Cancer Center's VP - and the rest is history. It was fantastic to get so much support from them and I feel lucky that I'm in a position where I can point out where there may be voids in our cancer program and to know the right people to go to to get them filled. We partnered with i2y and promoted the happy hour to all current and former patients in the 18-39 age group, along with the heavy promotions of the i2y group in the hopes to bring us all together. We built it. They came. And it felt fantastic to be a part of it.

Over the course of the night 25-30 young adults showed up - some currently in treatment, some years in remission, some with their friends, some by themselves. There were other women with buzzed heads and cute hats. Others with the tell-tale lady lump in the chest where their port lies. The conversations were so easy, so comfortable because you didn't have to explain yourself away - we were all there for the same reason - to celebrate our lives, dish about stupid cancer (and anything but), learn about each other's experiences, get inspired and of course, have a beer.

I met a young guy who had six biopsies before he finally got diagnosed. He has 43 radiation treatments to go and is working full-time as an investment banking manager. Like me working the IV machine, he stamps his own parking ticket at the Cancer Center valet stand.

I met two other Hodgkin Lymphoma survivors: one four-and-a-half-years in remission, the other one year ahead of me. It was so fascinating to hear what they went through, how eerily similar, yet so different our experiences were. One was told she couldn't eat any raw vegetables for fear of the germs they could carry, while I on the other hand have made that my diet mainstay! One begged for the port - in fact switched oncologists until one would give her one - while I shied away from it until I couldn't bear the vein pain any longer.

I met twenty- and thirty-something women with breast cancer, all positive, spunky, cracking jokes about puking, losing hair, going out.

I met another young guy who has undergone three brain surgeries and just recently discovered that a fourth malignant tumor has now grown. He traveled all the way from Danbury to meet others like him.

I met some who have ridden the cancer wave from pediatrics to young adulthood - the disease creeping in and out of their lives.

I met a man who was told that it was a fungus on his head caused from his hockey helmet (not cancer). I met a woman who took four months worth of antibiotics (of course, not cancer) before it was finally her dentist who diagnosed her with lymphoma.

It was such a breath of fresh air to see young spirits fighting against all of this and able to be out in the world, to be positive, to know that it's still okay to meet new people, to be at a bar, to snack on nachos and pigs in a blanket even with the dreaded cancer we all hold closer to us than we probably would like.

The difference in talking with these people was that they get it. I love my husband, my friends, my family, my doctor, the older patients that I've met, but no matter how much they try, they can't fully grasp what it's like to go from being a blonde-haired, successful, running, hiking, biking, carefree twenty-something with big plans for the future to a bald, weak, lethargic twenty-something fighting my hardest against an invader inside my own body. I hope those people that I love never have to understand what it's like. But for those of us who know the realities, it's nice to be able to talk to each other without abandon, to not have to worry about offending someone or making them feel uncomfortable. I could look these other young adult cancer patients in the eyes and without saying anything, completely understand each other's mix of pain and elation to be standing there in that moment. One woman thanked me repeatedly for helping to make the event happen, saying that it was exactly what she needed. It felt so incredibly good to be able to turn something as awful as a cancer battle into something positive for myself and hopefully many others to come.

The cause to advocate for young adults with cancer was illuminated more than ever for me. It's so important for everyone my age to realize that unfortunately, yes, we can get cancer too, and when we know something isn't right we need to be persistent, listen to our bodies and take care of ourselves. How I got to be a stage 4b cancer patient I will never know, but I only hope that others will learn from my story and pay attention to the warning signs. We tend to think we're invincible, we can take on the world. No time for sickness, for naps, for pain ... just push through. We've got careers to conquer, charities to start, countries to visit, families to create. Who has time to be sick? Well, it all comes to a screeching halt when you're standing in a dog park with an empty leash in your hand and the voice on the other line of your Blackberry tells you you have cancer and your life changes forever.

Brief Encounters

Brutal Simplicity 

I got all the way down to the beach and realized I forgot my book. It's windy and chilly so knowing there is no swimming to be had I turn back around to trek back up the weathered wooden staircase to the parking lot. It's after beach hours so the lot is sparsely occupied. 

I'm walking at a slow clip toward the car I had just came from, in my own world of thoughts, when I hear a tiny voice behind me. 

"Mommy, is that a boy? It is. It's a boy." in the not-so-quiet "whisper" of a four-year-old. 

"Shush, shush honey," the mom answered.  

I glance around me absentmindedly and see not another soul in site. This little girl is talking about me. I dare not look behind me but there is no doubt that this girl doesn't know what to think of this specimen she sees in front of her with what looks like women's clothing but no hair. I must have really thrown her for a loop. I'm wearing short green shorts and a bandana halter that reveals my back and bikini straps while my head is covered by my tan cap, which by no means hides the fact that I have no hair. 

I pick up the pace, embarrassed for the mother more so than myself and at the same time unable to ignore the twinge of hurt creeping up inside me. 

"But Mommy ... she looks like a boy. She's wearing a hat, but it's a boy. Is it a boy? It is. It is." 

"No. No ... " the mom awkwardly laughs it off knowing full well that I can hear her child's accusations. 

I pick up the pace as much as I can without making it obvious and reach for my book off the car's back seat with a swift swipe. I get my hand around it just in time to be able to shut the door and keep on walking while staying enough steps ahead of  the mom and child to not have to acknowledge them. The last thing I want is to end up face-to-face with this surely wide-eyed inquisitive girl and have to answer any questions or confuse her about gender forever. 

I make it back to my beach chair and sink in hard. From afar I watch the little girl get back at the sand with her shovel and run around giggling as the waves swirl around her feet. I know she has completely forgotten me as I was probably one of 1,000 things she questioned that day, but I know I won't forget her. So many of us struggle with gender, with appearances, with having the right kind of body, the breasts, the muscles, the V-shape, the curves, but in the simple world of a child it all comes down to hair length. Maybe there's something to be learned from that? 

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Chemo Talk Over the Clearance Rack 

"Are we doing the same thing?"

"Excuse me?" I say as I look up from the $7 sundress I'm fingering on the Marshall's clearance rack to see a woman with deep ebony skin, almond eyes and a raspy voice addressing me. 

"I said, are we doing the same thing?" she repeats as she draws her finger to her head and the scarf turban that covered it. 

Taken off guard it takes me a minute to register what she is asking me. I reach to my own head and remember I am wearing a navy blue bandana - a surefire symbol that I'm a cancer patient. Then I realize what this is about. 

"Lose your hair too?" I reply. 

"What kind you got?" she asks, her voice milky and fluid. 

I fill her in and she tells me she's got ovarian cancer. We stand there looking at each other for a minute and give each other a knowing nod before returning our glances to the end-of-summer deals on the rack before us. 

It's quiet for a few minutes then she says, "My chemo hurts. It hurts so bad." 

She's looking at me like I can make it better. Like because I'm going through it too I must know what to say. I have no idea what to say but come back with the only answer that makes sense to me: "You've just got to push through it. There's not a choice." 

We lock eyes in a glance of understanding then I drape the $7 dress over my arm and move toward the register. 

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A Sign 

We're finishing up our dinner of yellow curry and General Tso chicken on the outdoor patio of Meadow Asian restaurant. Maybe it was the spices. Maybe it was the miso. Whatever it was, I will never forget the moment. Walking up the path from the parking lot was my Peppe. My Peppe who passed away two winters ago. 

The man had the same labored walk, the same bend in the waist, the same weepy, yet bright eyes, the same stark white hair- thin but expertly combed into style. He wore crisply pressed tan linen pants and a wide plaid blazer in tepid summer pales with brown dress shoes perfectly buffed. An outfit I'd seen my grandfather wear many times on our trips to Tanglewood or Jacob's Pillow for a music or dance performance. 

I stared blatantly as he approached and could not take my eyes off him. I put my hand on Craig's and whispered, "Does that not look just like Peppe?" He nodded and locked in on the man as well. He stared right back at me as he approached, a stare I could feel throughout my entire body. 

He passed our table and entered the restaurant where he then waited in the lobby for take-out. My throat grew incredibly dry and my eyes welled heavy with tears. Craig was a mirror of myself and we just looked at each other stunned. 

The man came back out with his to-go bag and remarked to the host about a flowering bush right behind my chair. Even the shake of his voice was markedly similar to my grandfather's. He stood on the patio right beside our table for what seemed like a solid five minutes, though in reality it was likely only seconds, and we shared another long and powerful stare. He walked away slowly and purposefully before hoisting into the driver's seat of an SUV. 

I turned to Craig and said: "If he had stood there for another minute I was going to get up and give him a long hug." 

We compared goosebumps and shared several shocked sighs of disbelief at the surreal experience we just had. 

I remarked that my Peppe wouldn't show up all dapper to tell me bad news. 

The next day I got the word about my cancer-free PET-CT Scan. Now I know he was there to assure me that everything was going to be okay.