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.

Chemo Day 10

It's an odd thing being in remission while still going through treatments. And no matter how much I've learned that patience is a virtue throughout this whole process, it is still hard to accept that I'm not going to be better with the snap of a finger. 

I've been able to more effectively calm the "can-cer, can-cer, can-cer" drum beat that echoed so loudly in my head over the past five months. It's no longer daunting and ominous. Of course it's still there and still a huge part of my life, but not as overtaking. When I went back in for treatment Wednesday it seemed like it had been months since I'd been there. Of course it'd only been 14 days - same cycle it has been since May. 

I even went into the hospital for an early morning meeting before treatment. Then I shed the suit and heels for chemo sweatpants and slippers ... back into patient mode again, sigh. I was so not in the patient mode getting ready to go that I nearly left the house without my treasured bag of ice chips to suck on - very close call. 

But my mom got me there. Admittedly, I probably would have had trouble getting there if she wasn't driving me and talking the whole ride there. I had a rising sense of nausea the closer we got to the center. The concept is almost like knowingly placing your hand on a hot stove - you know you're going to get burned, that you're going to be in pain afterward, but you've got to do it. So I took lots of deep breaths of the last air I'd breath with a clear head for several days and went back in for 

number 10! 10! 10! 

My mom picked up bagels and cream cheese for the staff so they were especially excited to see us. As always, lots of laughs were shared and I was once again at ease and ready to face the chemo drip. Our appointment with Dr. Dailey was short and sweet compared to my past appointments when I would pelt him with a long list of questions each time we met. Now things are clearer and more straightforward: we're finishing this course and getting it done. It's nice knowing there are no more unknowns. 

The chemo infusion itself went fine - no problems. We played some Gin Rummy, read trashy magazines and watched some funny videos as I tried to demonstrate to my mom how Facebook works. For some reason I do seem to get more effected by the drugs. I feel very, very woozy during certain moments - wasted almost I'd venture to say. Like I had too many glasses of bad Franzia. I get very flushed and my mental processes certainly slow. For example, I was reading the newspaper and asked my mom: 'Who's playing Monday Night football tonight?' Chemo day is Wednesday. Yikes. 

Once I got home I was also more nauseous than I've ever been before. I spent much time in fetal position on the couch, Sammy highly concerned about my well-being, then even got so far as to crouch by the porcelain throne for a bout. However, I am proud to say that I did not vomit and I hope I can make it all the way through treatment vomit-less. It's the small victories, right?

I'm looking forward to a time when I can make advanced plans again, when time isn't divided into "good days" and "bad days," when I don't get breathless walking from the parking garage to my office, when I don't have to talk myself through things in order to stay focused, when I don't forget things that I just heard one millisecond later if I don't write it down, when the at times painfully embarrassing - and frustrating - effects of chemo brain subside. But it will all come in time. Right now I'm taking the bone pain, aches and fatigue in stride knowing that it's all part of the healing process. 

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? 

-----------------------------

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. 

----------------------------

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. 

Chemo Day Nine

9/9/09 was the date of my ninth treatment. Supposedly, the number "9" carries with it a lot of good luck, something I'm certainly not turning down these days. A quick Wikipedia search shows the supposed power of this number and I will believe it, because I want to. 

For better or worse, treatments are becoming old hat. It's not something that you think you will ever get used to, but after doing anything nine times I guess you get to know the drill. I can rattle off my pre-meds, the order of the drugs, alert the nurse when I see the saline bag running low so that she can switch it before having to clear out the tubes. I know what the different beep alerts mean. There's no sound in my life more rewarding right now than the high-pitched alert when the final bag of saline is dripped and I can be removed from my port-a-cath. I'll forever equate that noise with a sense of freedom. I can follow the rhythms of the IV bag rotations from hook to tube to drip. In fact, the IV machine reset itself after I unplugged it from the wall for one of many jaunts to the bathroom and rather than call for the nurse, I just took it upon myself to punch through the prompts to reset the thing. No longer is the IV pole and pump a source of intimidation, but now just a familiar part of the process.  Maybe by the 12th treatment I'll be running the show myself. 

Craig was my escort this time around as my mom was on a well-deserved vacation at the Cape. Always curious, he asks lots of questions about every step in the process, why some needles work certain ways, why some meds are given different ways --- certainly a forever student and the perfect teacher. He's also always up for a game which I love about him so we played "Set" and played around online as we passed the nearly five hours together. The cancer center was hopping so I didn't get my usual private room. That meant hearing about other patients' detest for salt or newly acquired tastes for spicy food, their bathroom habits, their grandkids and fatigue ... how they're so jealous of how I can look good without hair because I have such a young face. Ah, the joys of being the odd man out - does anyone think that it's kind of strange to be jealous of a 27-year-old with cancer? Yes, I'm just so happy that I can go through this now before I have wrinkles because that would just be the worst thing ever ... . Luckily, with Craig there I didn't feel forced into conversation and could still create the laid-back, zen atmosphere that I shoot for during treatments. No serious talk or drama allowed - no room for the negative. However, t-shirts that say "Chemo Day" with an angry monster that looks exactly like how I feel on those days is most definitely allowed. Shooting the shit about my woes just really doesn't do it for me. But, if anything, listening to how others handle things helps me keep perspective. 

We had a good, long visit with Dr. Dailey again rejoicing over the positive PET-CT Scan results. I gushed with thanks but he just said, "Thank you. You're making me look good." I do what I can I guess. He remarked at how dramatic the results really are noting that my first PET-CT Scan which led to my stage 4b diagnosis was aglow with cancer activity all throughout my body - now, not a sparkle. 

Craig and I asked a lot of questions: Where do the cancer cells go? What will the chemo be killing now? When will I feel normal again? What are the chances of relapse?

Well, the cancer cells become defunct and absorbed back into my body's tissues. It is always recommended to push through the full chemo regimen to be sure to kill any residual, microscopic cancer cells that may have survived. I should start to feel my strength coming back 2-3 months after my last chemo treatment, but it could take up to a year to really feel like my previous self. The chance of relapse is higher in the first 2-3 years after being in remission - if I can make it through these next few years without a trace of new cancer then the chances of me ever again facing this are much decreased. But yes, it is safe to say that I am now in REMISSION. 

I'm still not fully able to wrap my brain around this statement and am not quite comfortable in saying it because I still have much more to go in this journey. It's hard to grasp that I actually beat this. The wonders of medicine are amazing to me and I am so grateful to the medical community, but I'm also careful to take pride in what I did to complement that. There are times for being humble but this is not one of them. I am damn proud of all the hard work that I have put in (and will continue to put in) to beat this. I know that I survived this so well because my body was strong to start with and because I have always taken good care of myself - these past few months I just ramped it up into an even higher gear and I will never let that go. Having cancer makes you realize how fragile and powerful the human body is and makes you aware of the very real fact that you only get one of them to play around in for your 100 years or so on Earth. I'm not ashamed to say that I'm pretty impressed by the one I've got. 

This body's got just three more treatments to go. Three more whops of ABVD and all of its ramifications. I've been warned that these last few may in fact be the hardest as there'll be more healthy cells being killed off without the existence of the cancer cells, but I know I can take it now that I can see the light at the end of the tunnel. 

I'm Going To Be Okay

... eventually. 

I've just now come off the cloud I've been floating on the past few days after receiving some of the best news of my life. I think it was the delivery of it that made it even that much more overwhelming. 

I wasn't expecting to hear any news on my PET Scan. I had successfully pushed it out of my head telling myself that I would hear when the time was right. Well, I was in for a Neup shot to get my white blood cells back up and while I was sitting in the blood drawing throne Dr. Dailey happened to walk by the room. 

"Oh, hi, Karin, everything looks clear," he said while hovering in the doorway. 

I'm thinking, what's clear? The weather? 

"What?" 

"It all looks very good."

"What? (again) My scan?"  

Then he walked over to my throne where my fav lab tech and I sat. 

"I just reviewed your report and you show an outstanding response ... no signs of Hodgkin's remaining." 

I started bouncing in my seat and could literally feel this surge of emotion running through me. I pumped my fist in the air like a middle school boy who just sank a half-court shot in front of his girlfriend on the bleachers. Funny the weird things you do when emotions take over. 

Dr. Dailey patted me on the back and said we'd go over everything in more detail but all looked "outstanding" (my new favorite word), that we'd finish the 12 treatments and that I was beating this. When he left the room Denise and I hugged it out and I just kept saying: "This is the best news EVER!" 

I bumped into him again in the hallway and just kept thanking him for making my day. 

I went and told my nurse the news and she planted a big, wet one on my cheek. Even after I left the room I could hear her commenting to herself: "Wow, that is such good news!" I was so full of positive vibes that I don't even remember getting stuck with the needle. 

When I got outside to my car the flood gates opened. I cried through my smile the entire way home with music blaring and all the windows open. My tears literally felt like deep emotions pouring out of my body. It felt so cleansing to have an impressive showing of good tears - something I haven't shed in a long time. Everything felt lighter. 

I pulled in the driveway and walked over to Craig and shakily managed: "I did it!" before crumbling into his arms for another round of tears. 

We shoved a bottle of Veuve Clicquot in the freezer to chill then I started the phone calls to my family and got to relive it all all over again as each person on the other end yelled, burst into tears, or just sighed huge sighs of relief. 

That night we had plans to host my former director at the Arts Council, her husband, and another GHAC colleague for dinner. Well, they insisted on bringing the dinner and delicious pie, so 

really all we did was provide the setting. And a perfect setting it was to share my news, which I didn't divulge until well into the night. Craig quietly laid out the champagne flutes and bottle and everyone looked at me as I told them that yes, we had something to celebrate tonight. 

I've never seen grown adults squeal and jump so much! They were the perfect group to be there to share in my elation as they've been with me from day one of this journey, and through many journeys before (wedding, honeymoon, hurricanes, home buying). So, over out-of-this-world strawberry rhubarb pie and ice-cold champagne we toasted to the first real sign that I am in fact "Kickin' Cancer's Ass" as the magnet on my fridge says. 

I know it's not over - still one third to go - but this news will make it so much easier to handle. The chemo is working and I am going to be okay. Death is now off the table and I don't have the fear that I've been carrying with me all this time. I have many questions about what happens next, what the chemo will be targeting during these last four treatments, what happens when it's all over, when will I be back to myself ... I'm sure they'll all be answered in time. 

Tomorrow it is back to chemo for treatment number 9. As much as I am not looking forward to how I know it will make me feel, I can now go into it knowing that the side effects I'll be grappling with for the next week are not for nothing. The chemo is doing its job and all the effort I've been putting into keeping my body strong has paid off. It's a damn good feeling. 

Results

"All looks clear - no signs of Hodgkin's. Your report shows an outstanding response," said Dr. Dailey. 

There's still a lot more to this journey and two more months of chemo to go, but in this moment I am one million pounds lighter and overwhelmed with emotion. More to come. Right now I need to enjoy this moment ... and this celebratory champagne.