Monday, August 29, 2011
Sunday, August 28, 2011
Wednesday, August 24, 2011
Sunday, August 21, 2011
Saturday, August 20, 2011
My neighbors at home probably don’t appreciate it – as sometimes I forget that our house windows see both in and out – but I miss the freedom of eating a bowl of cereal in my undies – call me crazy.
Tuesday, August 16, 2011
Saturday, August 13, 2011
Thursday, August 11, 2011
Last weekend, I was honored to be asked to deliver a speech to athletes raising funds for the American Cancer Society through its DetermiNation training program. These athletes raised more than $200K toward ACS' patient services and research efforts by training for and competing in the New York City triathlon. When asked by Hope Lodge staff if I could talk about my cancer story and Hope Lodge experience, I gladly accepted. My focus was the importance of health, wellness, endurance and appreciation for those who so selflessly give – in many ways – so that this world can be that much closer to cancer-free. I am so grateful to have had the opportunity and am so inspired by these devoted athletes. One day I will be among them.
Know that the cause you have devoted your efforts to makes a tangible difference in a countless number of ways. Not only do your fundraising efforts help to make an essential facility like Hope Lodge and all of its offerings a reality, but your training efforts help to inspire and encourage cancer patients – and beyond – who may question their abilities to push forward when they hit their own personal walls.
You crossing the finish line today proves what strength, perseverance, determination and sheer willpower can accomplish: lessons every cancer patient needs reminders of during our difficult moments. You’ve given more than dollars to help ensure that cancer patients get a fair chance at treatment, comfort, and cure, you’ve also given the sweat to inspire us.
I am a huge proponent of the importance of health and fitness. At 20 pounds shy of my healthy weight, without hair, and wearing a germ-blocking armor of gloves and a mask, I may not look like someone who can relate to a group of endurance runners. But at one time, I hit the pavement, too. Two days before my cancer diagnosis I ran many miles with my dog on a hot, spring day through our neighborhood streets in Connecticut. I went to the gym at 5 a.m. before work each day. I hiked. I biked. I kayaked. I played volleyball. I ate a healthy diet. My only physical limitation was my inability to go underwater without holding my nose.
On May 8, 2009, at the age of 26, I found out that despite my healthy track record, I had cancer growing within me – a lot of cancer. Turns out that even athletic twentysomethings aren’t invincible against this undiscriminating disease. Lumps started appearing in my underarm, along my neck, and on my collarbone. Diagnosis took weeks of doctors grasping at the idea that it was an infection of some sort, trying myriad antibiotics to fix it. No one – most notably myself – considered cancer when looking at someone in my demographic. The lumps (which I later learned to be swollen lymph nodes) popped up more and more until one day I could not turn my head and landed in the ER. It was there that a CT Scan revealed I was full of lymphoma. The pictures of my insides lit up like a Christmas tree.
I was diagnosed with Stage 4B Hodgkin Lymphoma – a blood cancer of the immune system. We joke now that it was everywhere but my big toe: I was at the latest stage possible and needed to start treatment immediately. Even so, I was told in the beginning of this journey that I had “the good cancer.” There is no “good cancer.” I was told that the cure rates are very high and that I would be rid of it after six months of chemotherapy. Unfortunately, I fall into that small percentage of Hodgkin patients that did not get cured with front line treatment. This is why the research efforts of organizations like the American Cancer Society are so vitally important. Science has saved me.
I am now 29 years old and have been battling this aggressive strain of recurrent lymphoma for more than two years. In the span of this time, I have essentially been on nonstop treatment with all of the surgeries, scans, hospitalizations, and detrimental side effects that come with that. I have endured 24 different chemo drugs in 9 combinations. I’ve taken part in three clinical trials. I have had two failed autologous stem cell transplants using highly toxic chemotherapy that would be deadly if not for the stem cell rescue. I have been treated in Connecticut at Hartford Hospital and Yale. This past spring, my husband and I relocated to Texas for five weeks so that I could enroll on a trial of targeted therapy drugs that were still in very early development at MD Anderson Cancer Center: the only place in the country offering them. I’ve been through several drug trials at Sloan-Kettering here in New York that required slews of travel from our northern Connecticut home. Each therapy worked initially, but the cancer ultimately proved to be too resilient for any to provide a forever cure.
If it sounds like a lot it was – and still is. My body has been through hell and back several times over, but the key is that it keeps coming back. Its resiliency and ability to heal has astounded me, and I know exercise and a healthy lifestyle have played no small part in that.
I speak to you now at 50 days post-allogeneic stem cell transplant. This summer, due to the incredible work of the scientists, researchers, oncologists and medical professionals on my team, I finally reached a sufficient enough remission to go forward with the donor stem cell transplant that all agreed I needed to achieve lifelong remission. My younger sister turned out to be a perfect DNA match and on June 16, after tough lead-in chemo, I was given a second chance at life with the insertion of her donated stem cells into my bloodstream. Those cells are currently building a brand new immune system in my body that will hopefully forever keep the cancer at bay. The process required 27 days of hospital isolation. I was not allowed to leave the confinement of my hospital room walls.
On July 5, I was released and my incredible husband – and cancer co-pilot – Craig and I had the privilege of moving in here to Hope Lodge. The high risk and frequent doctor visits my allo transplant requires forces me to remain in NYC close to my Sloan-Kettering team for 100 days post-transplant. We have been away from the familiarities of our home for two months now: half spent in a hospital room and the other half here at what I’ve affectionately come to refer to as “the lodge.” It’ll be a while longer before we can go home.
Sure, we miss our house, our family and friends, and our yellow lab terribly, but Hope Lodge has provided more comfort and community than we ever could have imagined. On the day we moved in I was so weak that I could not even complete the tour of the place. When the volunteer got us to our room I sat on the king-size bed: a huge upgrade from the paper thin mattress at the hospital, and I broke down in tears in front of her when she told me that even the washing machines and dryers here were free.
I don’t know how we could ever financially manage living in Manhattan for the summer on top of the tremendous medical bills and the household expenses we need to maintain even though we are not there. Never mind the lack of job income. To have a place like Hope Lodge to alleviate that financial burden is no less than a miracle. It allows us to focus on more important things. The support services they offer here have been essential to both of our healing. I’ve napped on the outdoor couches. I’ve laughed along with the comedians brought in. I’ve relaxed and rebuilt with the yoga and energy healing sessions offered.
In the first week here I had a particularly rough evening. I was doubled over with stomach pains, palatable nausea, chills and a migraine. I was sobbing crying in pain and self-pity curled up on the bed. My husband dragged me to my feet, helped me into my sweatpants and down to the sixth floor to see the Cherub Improv troupe perform. The group’s visit had been announced on the weekly activity schedule slid under our door. Despite my reluctance to leave the bed, once I got to the performance, I laughed so hard that it physically hurt, in a good way. I was howling laughing and I could not believe that this perfect cure to my woes was brought right to me, and that I could enjoy it in my hangy sweatpants with a heat pack on my belly and one on my back and no one gave me a second look.
That’s been the most cherished aspect of living here: the respect, comfort, empathy, and support displayed by everyone. We’ve built intimate friendships with fellow patients and caregivers that can relate to what we’re going through in a way that no one else can. There are currently several others here who have gone through donor transplants at the same hospital on the same floor with me. It helps so much to know that I’m not alone on this journey. We’re able to whine with, celebrate with and encourage each other as we heal.
This building is where I literally learned to walk again and laugh again and where I began this promising, though tumultuous, path to healing. We’ll forever cherish the safety and community that Hope Lodge has brought us and are tremendously grateful that a place like this exists. We realize that without devoted supporters like you, it would not be here. It is so comforting to know that because of your efforts, future patients will be able to find home when they have no choice but to be far away from their own.
So thank you for challenging and pushing yourselves so that our lives can be a little bit easier. I know that if it weren’t for continuing to be active throughout my treatment that I would not be here talking to you today. Learning about DetermiNation and your accomplishments solidifies that fact. Even on my most difficult days, inspired by all the patients here healing along with me, I have made it a point to get up and do something active. These days, it might be just getting from my bed on the 12th floor to those chairs out on the patio – on others, it’s walking a mile. I still have a lot of healing to do, but I am fortunate to have glimpses of a strong body again and I know that I will get there. To be cliché: treatment recovery is a marathon, not a sprint.
I don’t share my story to make you live in fear of disease, but rather to inspire you to continue on your paths of wellness. You only get one body and it is moving to see people who are nurturing it and exercising it in the way it should be treated. Inevitably, we’ll all hit bumps in our road, we’ll all have some kind of bout with illness, but the adventure is made much easier when you’ve given your body the tools it needs to get through unimaginable physical, emotional, and mental challenges. Not only are you keeping yourselves fit, but you are doing it in honor of those of us who have lost our health and giving us hope to endure. Because of the contributions you’ve made, we will find health again.
Tuesday, August 9, 2011
I see now why allogeneic stem cell transplants are not something handed out like free mints. There's a reason the doctors avoid this until absolutely necessary: it is rough, rough, rough.
Typical days have been full of really good moments and also some really difficult moments. My progress is like ocean waves. There are crests and dips. Sometimes the tide is in, sometimes it’s out. But what matters is that I am still undulating and moving forward in the right direction. As long as the overall trend keeps heading upward then I'm doing well.
It's not expected that at this point I'll feel fully back to myself, have the energy to get through the day unscathed, nor have perfectly normal bodily functions. But it's very difficult to not go crazy overdoing it when I do have days when I'm feeling well. It’s a constant balance of pushing the envelope a little bit then giving my body a big rest. This is a balance I've struggled with maintaining all during cancer treatment and now this is the ultimate test. As soon as I think I learn my capabilities, my body bites back and I get frustrated and am forced back a few steps: 5 steps forward, 3 steps back. But again, overall, I've been moving forward and that's what matters.
It's that damn patience thing that I have to focus on again. I haven't had a day yet when I got through the entire thing without having at least one crash. Craig explained that my days are divided into chunks: morning routine (7am-11am), midday (11am-3pm), afternoon (3-7pm), evening (7-10pm), nighttime. Inevitably at least one out of those five gets off kilter or is particularly difficult. Unfortunately, when and which one is not yet predictable. The side effects roll in like a freight train and knock me right on my back. I have a great respect for the energy and attention my body needs.
Eating has become much more enjoyable. I still have all of the antimicrobial food restrictions – which will continue for another four months at least – but we've gotten more creative with meals that are safe and taste good. Another big shout out to Trader Joe's prepared frozen meals. There are also some thick skinned fresh foods I can eat as long as they are thoroughly washed and peeled and cut without contaminating them: clementines, avocados, cucumbers and cut watermelon have allowed me to have a little taste of fresh summer. Pickles and bottled Kalamata olives have been a diet staple. My taste buds are back, so super harsh flavors make my mouth dance in happiness.
My energy is on the increase most days. I've been walking between 1 to 2 miles around the city. It feels great to be on the move, but again, I've got to go easy. We've had visitors come to see us literally just about every day, which has been wonderful to see fresh, familiar faces and hear stories from the outside.
Just a couple highlights among the many memories we now cherish: On Thursday, we met up with our friends Courtney and Bryan in Union Square who brought a teeny version of the lawn game corn hole for us all to play: it felt like an actual summer event.
Last night, along with our good friends Seth and Lisa, we heard the groovy bongo sounds of Guster – one of my favorite bands – perform at Summer Stage in Central Park. I say “heard” vs. “saw” because we stayed out of the actual concert crowd and instead enjoyed the music free of cost and germs on a blanket outside of the crowd barriers. It was a perfectly humid summer night complete with fireflies and easy laughs.
We've been testing out parks and hangout areas all over Manhattan. I'm allowed to explore outside as long as I have my mask and gloves on and steer clear of highly concentrated crowds. Indoor crowds (restaurants, movies, mall) are big no-no's still and will be for a while. Over the course of my month living on 32nd Street we've walked the Battery Park City walk along the Hudson, hung out in Bryant Park – where we also saw Broadway singers perform for free, Union Square, Central Park, Madison Square Park, the Highline several times, Koreatown, and much of the Upper East Side.
I did land back in the hospital for three days last weekend. That was not fun. I ended up with an infected Bartholin's gland in my lady parts. I was in excruciating pain from the swelling, hardness and pulses shooting through my groin and leg – pain to the point of tears. It's something that had been brewing for a while and went from superficial to infection very quickly. When chills set in I knew I had to call the Fellow on duty and not surprisingly, I ended up in Sloan's Urgent Care Center where it was decided that I needed to be admitted as an inpatient so that I could receive hardcore IV antibiotics.
I had a bad reaction to the first antibiotic they tried: Vancomycin. I’ve reacted mildly to this in the past, but this time around it was full blown “Red Man’s Syndrome.” My face and chest flamed red and blotchy, my lips swelled to Angelina’s size, and my head was covered in an itchy rash. Doses of Benadryl didn’t even eliminate it, and I suffered through the reaction – and the woozying Benadryl effects for the entire slowed three-hour infusion.
After they found some other antibiotic options the infection started to clear after just 24 hours of the IV drip and no less than a dozen medical experts, often three at a time, poking and prodding in my Nether regions (defined by Wikipedia as Hell, the Underworld, or any place of darkness or eternal suffering.) I'm on oral at-home antibiotics now and the issue is essentially gone and back down to size. It was pretty awful being back in the hospital though. I did not miss being hooked up to the IV drip and showering in a two-by-two shower after finally getting a taste of freedom. It was a necessary evil though, and I'm all better now in that department.
Craig and I have been taking trips to the clinic an average of three times per week, so I'm still being watched very closely. In fact, I'm here in clinic now as I write: a "quick blood level check and meeting with the nurse practitioner" has turned into a seven hour stint as I wait for a Magnesium boost. But it sounds like I don't have to be back in until Friday for a breathing treatment. I'd rather do one marathon day than five halves. That way, the rest of our days can be spent doing more enjoyable things than sitting in waiting rooms.
Our days have been so full and we have never been bored with lots to entertain us. Craig bike rides and goes to the gym and explores. I write and nap and people watch, walk, read, visit with other patients, and recoup. We’ve both developed a guilty pleasure of watching New York Live – a trashy and indulgent “news” show that conveniently comes on right at rest time each evening. That combined with Ellen the hour before are what I zone out and laugh to during wind down time.
A big recent highlight was getting to see Sammy The Dog this past weekend. Our friend Ryan, who has been hosting her at “Sammy Summer Camp” along with his girlfriend Serena and their dog Cody, picked us up and drove us off the island to Jersey where Sammy waited at his parent’s home. Craig has only seen her in short weekend glimpses and I hadn’t seen her since June 9 (but who’s keeping track?)
She’s doing so well and it was glorious to be reunited with her. I had to wear my gloves to pet her and couldn’t let her cuddle up on nor lick me too much … though a few kisses may have slipped through, but it was amazing to see her all the same. Ryan’s parents hosted a fantastic picnic lunch for us – my first home cooked meal –and we ate on the porch surrounded by the smell of fresh cut grass and the sound of birds chirping vs. car horns honking. The country air felt great and it was so relaxing to have the dogs relaxing at our feet and the weight of Sammy leaning up against me. It was a taste of home. The next day was very difficult having had that taste and again waking up in a bed that’s not my own.
We are both very ready to be back in our own space, but have made a home here nonetheless because no matter where Craig and I are, home is wherever we are together. So we’ll soak up NYC for at least a few more weeks while we wistfully dream about our own kitchen and bathroom that we don’t need to share with house mates.
Tuesday, August 2, 2011
It’s hard for me to wrap my brain around the fact that the treatment I’m undergoing right now is a constant therapy. It’s not drugs and poison that are haplessly trying to seek and destroy cancer cells and my good cells along with it. That part is over, but not so easily forgotten. I’ve been burned so many times – 24 different chemo drugs in 9 combinations. Each one worked initially, but the cancer ultimately proved to be too resilient for any to provide a forever cure. But unlike those, this immunotherapy is my cure and I look forward to that two-year mark when I can say in great confidence that I am in long-term remission. For a long time I’ll still be leery, but at least now, with negative side effects diminishing daily, I can live my life without the physical disabilities weighing around my neck like a noose. That rope has been cut.
But again, there’s that unexpected feeling of loss. It’s like an unrequited relationship with an ex-lover. Hodgkin was destructive and abusive but somehow we kept finding each other and I kept finding myself falling back into its strangling arms. I’d dig my way out and think I’d moved on then he – it – was back with a vengeance, overtaking me. There was nowhere I could hide so I had to dance with the cancer, to adapt with it and work with it in order to get out of the relationship alive. I had to give tough love back until we could find common ground amid the battles and the tender moments. Hodgkin needed something from me and I needed something from it. I hope it is as satisfied as I am right now and that we’ll forever be able to live in harmony and peace. I’ve been running toward this peace with all my energies, now I’m happily running toward peak health with that peace I’d been seeking finally right there within my heart.
As detrimental as it was to my entire being, cancer, its treatments, and the very small world it put me in, are what’s been familiar for so long now. The aches are familiar. The fatigue is familiar. The nausea, the mood swings, the foggy headedness is familiar. What’s not familiar is being able to take a deep breath without coughing or to be able to crack a joke with perfect timing or process a scenario with ease, confidence and clarity – comforts I haven’t known in a very long time. I didn’t realize how much Hodgkin was holding me back. I love how free I feel right now. I love that all parts of me feel aligned again, a truly miraculous sensation. What’s even more miraculous is that I’m only 46 days into this forever healing. For the first time in more than two years I’m not getting better only to gear up for the next toxic therapy challenge. If I feel like this so early out of the gate, what will it be like years from now? I imagine it to be nothing less than bliss run rampant.
Cancer is and always will be a part of me in some form in the theoretical and the biological sense, but what doesn’t have to remain is the baggage that it carries. A fuzzy, painful, uneasy world was my world for a very long time, but I fell into its syncopations because I had no choice but to absorb the punches. Now I’m introducing myself into an entire new world, a world in which I’m punching back into the air with zeal. It’s not like the world I was in even before cancer: it’s even sweeter, more tender and graceful, and more inspiring by the moment. I would not realize this had I not seen what hell looks like. I would not have known the breadth of my capabilities to move, feel, think, create, and connect with others on this wild ride we call life. A life that to me is no less than heaven.
I know my relationship with cancer is not over, but I hope we remain friends. It will take a long time to heal from the forever imprints it has made on my being – a tattoo inked during a 29-month bender. I will hear, feel or taste something in the air and like a cheesy romance it will take me right back to our tumultuous times together – times of rawness a Hollywood script can’t give justice to. It’ll be just me and that trigger and the rest of the world spinning out of control around us. It can be the scent of an alcohol wipe, the sight of a pulpy blanket, the twitch of my oncologist’s eye.
The memories come flooding out of the abyss. I am in slow motion and completely transfixed with jarring flashes of PET Scan hot spots, bloody gauze, painful needle sticks, and mustard yellow-colored vomit buckets. I’ll find myself itching at glue left on my arm skin from the endless strips of medical tape – glue that isn’t there. Everything around me spins at dizzying speeds and there I am, unable to move, unable to see past the torture of my tormenting lover.
Then it’s over and I breathe and I see my scars in a new light. They are tattooed reminders of that bender that yes, I roared through, but understand that I’m still sobering up from. I’m stumbling back into clarity, still nursing the hangover, still a little buzzed.
“If you’re going through hell, keep on moving. Don’t stop now. If you’re scared don’t show it; you might get out ‘fore the devil even knows you’re there.” – Rodney Atkins