Sunday, December 25, 2011

A Merry Christmas Story

When the stress of the holidays gets intense and it seems like everyone is just wrapped up in the consumerism of it all, remember this story and don't get discouraged. The human spirit is astounding and what I love the most about this time of year is that it gets a platform to shine its brightest.

Craig, Sammy Dog and I have experienced what is true Christmas magic this year. We've experienced the meaning of selfless giving and humbled receiving among human kind. It came in the form of surprise "elves" who visited our porch steps devotedly for 12 straight nights – the 12 days of Christmas.

It started with a little pear tree and two pears completed with a rhyming note that spoke of the trees that had fallen in the freak October snow storm that blanketed our town and the ensuing magic that would be brought to us: "Diamonds, you have no idea what you're in for." And, we didn't. We thought it was cute. Craig devoured the pears and we sat the wrapped pear tree on the bongo drum next to our Christmas tree.

To our surprise and delight, every evening brought a unique, thoughtful gift or basket of treats and a creative note to go with it, following the theme of "The Twelve Days of Christmas." These elves would stealthily reach our doorstep each night somehow undetected by the perky ears of Sammy dog and our usual keen observation of any action on our street as we live on a dead and and the sound of cars always brings excitement. 

Most nights we wouldn't notice anything until the doorbell rang, Sammy went crazy and we dashed to the window. But we never saw more than a fleeing set of arms and legs sprinting away and could never tell who it was. The elves would come at different times each night, making it difficult to stake out their arrival through our picture window. They would roll up the street with the headlights off on their cars so we had no chance of being alerted. Our living room and dining room are full of windows and the wrap-around porch was aglow with white Christmas lights, but somehow these elves made all of their deliveries without revealing their identities. 

We would get so excited each night counting down the hours until their arrival and trying to guess what the next gift might be. Each one was always thoughtful, funny, and so tailored to everything we love – Tazo Tea? Stella beer? Cheesy quiche? Homebaked dog treats? Crazy mismatched socks? A Clean Food cookbook? It must have been someone that we knew, but when we accused all of our neighbors and friends, no one had a clue. We thought at the time that they just had a really good poker face. 

The anticipation and excitement of it all was utterly thrilling and so magical. I had some particularly difficult times filled with pain and frustration over those 12 days, but no matter what, when we heard the thud of a present on our porch, I couldn't hold back the smile and Craig would go running out to retrieve it. We'd open each one together carefully reading through each note of adorable poetry and sifting through the goodies. One night I was away for an emergency overnight at Sloan-Kettering hospital in NYC with my parents, but Craig sent me a photo of that evening's gift so that I wouldn't miss out. 

Many of our friends, family, and neighbors knew about and would wonder in anticipation with us what this whole ordeal was all about. And even Craig's fifth grade class got into it as they would guess as to what the 8th, 9th, 10th, night would bring based on the classic song and Craig would report to them in the morning what arrived for us. One student even drew a picture of "Mr. Diamond" opening the door to greet the elves and find the next treasure. The whole concept brought everyone around us so much joy and childhood wonder.  Again, it was nothing short of magic and it couldn't have come at a better time for magic in our lives having taken a few very hard blows this month. 

Turns out, these elves aren't a set of close friends. They weren't colleagues or close neighbors. These elves were three families from our town, Simsbury, who are complete strangers to us. The letter enclosed in the 12th night gift revealed that each year the families work together to choose a recipient of their elfing escapades in the hopes to bring some extra cheer to those in the community who may need it one year. We were the fortunate and humbled recipients of these families' incredible, selfless act of pure giving and love. 

I cried and Craig even teared some as we read the letter revealing their stories about these random acts of kindness they've been performing for the past six years. I was in awe and so deeply touched by the thought and care, grace and support, joy and peace that these perfect strangers brought into the lives of two young people and a crazy dog that they've never even met. As moving, was the college entrance essay the elves enclosed, which was written by the oldest elf-child, now a college freshman. It talks all about the life lessons she learned while performing her elfin deeds each year during the holidays – lessons so many of us can gain from. 

In their note, the elves (who we still only know as "Ezra, Blanche, Torchy & Their Families") mentioned that they read my blog. If you are reading this now, please know how much you have touched our lives. You infused such a spirit of joy in us and we are eager to spread that cheer to everyone around us and to be able to pay this beautiful gift forward one day. We are so sorry that we weren't home on the 12th night and hope that you received our note. We desperately want to meet you so that we can know the identities of these magical elves on Earth! We want to hear more about the antics and the background involved in this wonderful and wacky project and are so honored to have been a part of it. We want to meet you and hug you and thank you ten million times over. Maybe we could schedule a date with you, elves? Please e-mail me at 

There really is magic all around us. Thank you for helping us see that even through some of the darkest times. Love, peace and joy to you, elves, and to all who may be reading this. Hold your loved ones tight and breathe in these special moments of sharing, giving, and just being together. I wish nothing but unadulterated joy for all of you in the year to come. 

Sunday, December 11, 2011

Not As Easy As It Looks

I haven't been able to write. I still don't know if I am able to write, but I'm going to give it a try. I'm not certain why it's been so difficult. I think it's a combination of not wanting to dole out difficult news to those that read this and of the memories that flood in every time I open this blog page. But this is my outlet and this is my honesty. I haven't been feeling "inspirational" or "heroic" or "positive." For really the first time, everything has caught up with me.

I have been living with focused blinders on and now am suddenly feeling all the punches from nearly three years all at once. I've gone at this with sheer determination and I know that what I am writing here will come as a surprise to many, but I am asking for your understanding and support. I know that this is not what always appears on the outside. But I believe that it is important for everyone dealing with their own medical issues and for those watching a loved one go through it to understand that we can't be smiling all the time and that it gets very tiring to hold it all together. I think that that's okay. But I don't think that it's easy to admit.

Life has been very difficult over the past month. Things have been more difficult for me to handle than they have ever been. I've been dealing with a lot of anger, frustration, and feelings of defeat and helplessness. I'm uncertain and uncomfortable. I'm unfocused and unstable. I get very sad and very mad and very frustrated. I'm finding it much harder to pull out of the low places. I'm finding many less places of elation. I resent other people and get wildly jealous of their happiness and wish desperately to find my own again. I feel like I cry all the time, but at the wrong times.

I hate being on treatment again. I hate that I have no idea if it's working. I hate the feelings that the Hodgkin's disease is flaring up. I hate the fear of GvHD. The Revlimid has been primarily well tolerated except for tremendous fatigue; I am so tired all of the time but so anxiety ridden that I can't sleep in the way I need to be sleeping. My eyelashes have thinned again, nearly all of them that I worked so hard to re-grow after transplant have been showing up on cotton balls and on my pillow. I again have the eyes of a cancer patient and it's incredibly unnerving.

Thursday, November 24, 2011

Grateful for This Life

Today I am thankful to be able to honor the fragility of life. Because of that humbling awareness, I am grateful for every single person and moment in my life –  from the patch of sun across our living room floor that welcomes each morning to the sight of my adored husband and dog cuddled and snoring together on the couch.

I am grateful for this life, today and every day that I get to live it.

Happy Thanksgiving to you and your loved ones. My wishes for a day of warmth, laughs, and the recognition of miracles all around us. Thank you for helping me to realize the power of the human spirit. This blog and its readers are such a gift to me. Please continue to direct that spirit to Craig's mother as she endures a most difficult time and hope for peace for her.

Sunday, November 20, 2011

Biopsy #4 and Revlimid Start

It's been a while and much has happened. I had the biopsy procedure of my right sacrum performed at Sloan-Kettering. The pathologists have read the sample and confirmed that yes, there are the telltale Hodgkin Lymphoma Reed Sternberg cells present. It's the same disease trying to flare again, now most certainly in my bones. This wasn't a surprise to anyone, but it does help the situation to know we have some hard pathology evidence of the disease we're trying to go after. 

The biopsy procedure was not fun, this is certain, but it’s over, and I was fine after just a couple of days of swelling and soreness in the area. There were many hours – way too many hours – spent waiting and fasting before the procedure. I had to fast from midnight the night before until after 4 p.m. when I came to from the twilight sedation. It was a long day in the city. The surgeon went in with a needle and bone hammer and extracted a piece of the bone and marrow where disease looked to be involved, pinpointing the area with live CT Scan technology. The surgical team gave me medication to relax me, but I was by no means asleep. I played Bob Marley through my headphones and welcomed the anesthesia nurse’s hand that rubbed my arm throughout the most painful moments.

Then came more days of waiting: for results and a plan. Then came more traveling to NYC to solidify that plan, including a solo trip by car and train – liberating! I’ve done an incredible amount of thinking and contemplating and talking out options with my family and medical team, but mostly with myself. I had to ask the really difficult questions to my doctors to be able to get things into perspective here. They’ve been realistic and gracious and I could not be more appreciative to have the individuals that I have in my corner.

It took me a few weeks to get to this point, but right now, that CT Lottery tagline: “You can’t win if you don’t play” keeps coming to mind. So does the Wayne Gretzky quote: “You miss 100% of the shots you don’t take.” There are still shots for me to take and I can still win, but I have to play in order to do so. Playing will not be easy and the idea of more treatment is deflating, but it beats the alternative. To be very blunt, if I don’t play, I will die. This lymphoma will begin to become very painful and it will kill me.

In black and white, the risky treatment might kill me; the cancer will kill me. I’ve decided to hedge my bets. Because there are areas of cancer on my vertebrate, it eliminates my hope to be able to ride this out for a while longer, to “wait and see”. If I want to maximize the effectiveness of my current options, I need to act now. There is still hope for this donor transplant process to work – we just have to poke it a little bit. 

I am reluctant to have more toxic, traditional chemotherapy and have exhausted most of those options anyway having been so heavily treated. I do not want to send my body into tremendous trauma again, and because of constant scientific developments I hopefully will not have to.

Gratefully, there is a promising option and I have decided to embrace it. I’ve started a targeted therapy drug, Revlimid (also known as Lenalidomide). It is an FDA approved drug used primarily against Multiple Myeloma. However, there have been recent and ongoing studies of its efficacy against refractory Hodgkin Lymphoma – even after donor transplant. It has shown some promise in these studies, and I’ve connected with a couple of other refractory HD patients who have had great disease reduction results with it. The best part is that because it is a targeted therapy, the side effects are said to be minimal. So far, this has been true. I’m a little more tired and more easily winded, but that seems to be all.

The drugs were delivered via FedEx to my door. It is an oral pill that I have been taking once a day and will continue to for the 21 day cycle, one week off, then a second cycle. After two cycles we will check a PET Scan to see the progress that the therapy is making against the disease. Because this pill is such a "light," targeted treatment I can be on it for a very long time if needed. It's not like toxic chemo that a body can't handle for prolonged periods.  

In some post-allogeneic transplant patients, Revlimid has actually pushed them into some mild Graft vs. Host Disease proving that the drug may actually have a stimulating affect on the immune system/donor lymphocytes. This possibility makes the therapy even more ideal because not only will it be going after the small amount of lymphoma I currently have, but it may also ramp up my newly donated disease fighting cells: a win-win.

The hope is that the Revlimid will reduce the disease tremendously and will allow me to go forward with the Donor Lymphocyte Infusion with a super blast of my sister’s disease fighting cells. That procedure of course comes with the risk of mild to severe Graft vs. Host Disease, but also the only promise for long-term remission. I’ll revisit that decision when we get to that point. Right now, we’re working on getting the lymphoma under control while keeping my quality of life as high as possible.

Life has been very emotional in many respects – tough moments but also beautiful moments. I am feeling mostly well and I can do most everything again. I’ve had nearly five months without chemotherapy treatment and much healing has happened during that time. The freedom and confidence that allowed has done wonders for my spirit. My limitations will increase some again once this new drug begins to affect my blood counts, but it shouldn’t be anything extreme. I’ll continue to see my lymphoma doctor at Sloan-Kettering once every other week and will have blood work drawn locally at Hartford Hospital’s nearby cancer center every week.

Yes, treatment continues, but my life does too. Living is my focus now more than ever. No more being a full-time, incapacitated patient. I am taking full advantage of my renewed strength and mental capacity. I am still going back to work full-time from home as planned. I start tomorrow and I can’t wait to delve into the projects at hand. I'm working out with the LIVESTRONG at the YMCA program. I am also flying to visit my sister in Las Vegas for a few days and very much look forward to seeing the desert and mountain landscape out there: one night we’ll be camping in the Valley of Fire, another we’ll be taking in the Vegas strip. Maybe I’ll just put it all on red? 

Monday, November 7, 2011

Scan Storm

Two days after getting my less-than-desirable PET Scan report, we lost power at our home in Connecticut, along with just about everyone in our state. We had no heat, hot water, lights, internet, cable, or electricity. We remained out of power for 7 days. There are still 45,000 customers out of electricity here in Connecticut and I feel greatly for them: the scenario can be quite frustrating. The timing of it all was impeccable because for Craig and me, it actually provided a very welcome distraction from the realities of the news that I got. 

We spent the week in the comfort of neighbors' company with unexpected sleepovers, rotating dinners among all of our houses, lots of laughs and indoor camping. I got good use out of my long underwear and all of our blankets. It was confirmed once again that we have the best friends, neighbors and family. 

Lights out pizza party 
After a long day of doctor meetings at Sloan-Kettering on Friday, Craig and I came home to the beckoning beam of our driveway floodlight and the sound of our neighbor in our basement rewiring the electricity from our generator to our main switchboard. We came in to the heat pumping from our pellet stove and the house whirring with that buzz we all take for granted. It was glorious to be able to sleep upstairs in our bed for the first time in a week, rather than bundled on a couch or air mattress. 

The symbolism of it all was kind of eerie. The plug was pulled out of me for a while there, but there is still light. Yes, there is the dark light of hot spots on my PET Scan, but there is also the promising light that is new experimental drugs and a lymphocyte boost. All of that light came flying at me violently twelve days ago when I first learned the news. My friend Meredith's mother, Julie, generously drove me into Manhattan and killed time while I endured my PET Scan then went to meet with Dr. Sauter to go over the results right afterward. 

He walked into the room and said: "How's your back feeling?" and proceeded to rub the middle of it asking me if it was sore. I knew immediately what that question meant. He informed me that there were some hot spots on vertebrate on my spine, two new lymph nodes lighting up in my right chest, and that the spot on my right hip/sacrum had grown more prominent since my last scan. In short, it looks like the lymphoma is on the rise again despite my new immune system.

Friday, October 28, 2011

Tough News, Good Thoughts

I didn't get the news I hoped for yesterday. There are some new questionable spots lighting up on my PET Scan. We are working on digesting the news and formulating a plan. Thank you for continuing to keep good thoughts for me.

Wednesday, October 26, 2011

Let's Do This Thang

I once again feel very, very good. Last night I actually paused to check if I was still breathing because I was breathing with so much ease. I have no fullness in my chest and no twinge over my heart when I breathe deeply. I've made a full recovery since the cold that sent me down into the depths of fear. My mood and outlook are a million times better, and I am again completely focused on moving forward. Tomorrow will be an important part of that movement: my Day +133 PET Scan – the one we bumped from last week.

I'm pretty psyched up for it rather than psyched out. This has never happened. Of course I still have plenty of anxiety and worry, but I feel as confident as I think is possible going into one of these things. I feel ready: Let's do this thang. Maybe that's why I had a rough patch there. I knew there was something else going on and didn't want to spoil results. I'm now much more ready to handle those results – whichever way they might swing. I feel fantastic by my standards and that's what matters.

Thursday, October 20, 2011

Worried Sick

I feel as if I’ve squandered away the past week. I completely bowed down to the tremendous anxiety and stress that today’s looming PET Scan was causing me. And after all of that fretting, my oncologist and I decided to postpone the scan – as well as my appointment with the transplant team – until next week. I contracted some kind of cold/flu and we do not want to risk a false positive reading on my scan results.

Whether I picked up a germy somewhere or I got myself sick with stress, I came down with a whopping sore throat, chills, feveryness, aches and tremendous fatigue this past weekend. I convinced myself that it was DoomsDay. I worried and worried and worried and worried about all the scenarios:

Conclusion A: I’d never recover from the virus I’d contracted and it would find a way to eat me alive

Conclusion B: Hodgkin’s Disease was flaring on the rise, for sure, so fast that my new immune system would never be able to catch it

Conclusion C: I re-broke my foot, as it was so achey, along with the rest of me. A piece of bone must have dislodged and was floating through me ready to nest in my brain and cause me to hemorrhage (so obvious)

All of these scenarios were evils that I manifested then couldn’t handle comprehending. I completely lost control and surrendered, basically digging myself a grave these past few days. I conceded defeat and moaned and groaned the days away just wishing I could get to today to have my damn PET Scan that would seal my fate. That is not like me, and I hated it.

Friday, October 14, 2011

By Bike and Boat I Go

My broken foot is now in an air cast that is worn with a sneaker allowing me more flexibility and more opportunity for sporty activities. Of course I latched onto this news with zeal.

After examining an X-Ray of my foot bone last week, my orthopedic doctor told me that I could start using a stationary bicycle while using the stirrup air cast for support.

“How about a real bike?” I asked him.

“Just don’t fall off,” he replied, warning that sometimes people find that their balance is shaky after being off of one foot for so long.

Thursday, October 13, 2011

Day +119 Recovery Update

Last week’s check-up at Sloan-Kettering was the smoothest that I’ve had yet. A friend’s mother’s best friend, Renee, picked me up from my home and drove me all the way into Manhattan. We hit no traffic on the way in and very minimal on the way home – a rarity. The smooth nearly seven-hour roundtrip commute allowed me the opportunity to get to know this incredibly giving woman who offered up her day and escort services to help out a near stranger. She incorporated a lunch visit with a friend while I took care of medical business.

I completed the drooly, spitty, alienish process that is the monthly Pantamadine breathing treatment to prevent against PCP pneumonia. After I removed the misting pipe from my mouth and was unzipped from my human size plastic bag they lock me in to hold in the medicinal excrement, I was ushered to my next part of the appointment.

Tuesday, October 4, 2011

Day +110 Recovery Update

With one of my best friends, Meredith, at her 
recent engagement party.
My foot is still broken, which means it’s still in a walking boot. I have been toting around an extra 1.5 pounds for three weeks now. There is a lot of Velcro strap tightening involved and a lot of heel-toe hobbling. However, like Forrest Gump, I have shed the crutches. I just won’t be running to the West Coast anytime soon. Instead, like my favorite Jersey Shore gorilla, Ronnie: “Every Day I’m Shuffling.” Cue club music.

I return to the orthopedic doc tomorrow to check on the bone healing process. I can just about put full weight on it now so I expect he’ll say that it’s healing well. This is a far cry from several weeks ago when I could not go up even our shallow porch stairs and in order to bathe, I had to sit in a plastic patio chair that Craig squeezed into the shower tub for me. I’ve been consuming a lot of soy protein and started up on Calcium plus Vitamin D supplements in addition to my multivitamin, folic acid and Magnesium that I’m already on per post-transplant needs.

Monday, October 3, 2011

Dietary Negotiations

“So now that I’ve essentially reached 100 days, do any of my diet restrictions loosen up?” I asked Dr. Sauter at my Day +98 check-up.

“Now we’ve reached the point when it’s time for negotiating,” replied Dr. Sauter. “What is it that you want to eat?” he asked me playfully.

Oh no. The pressure of this immense decision! I have to pick something that’s worth it and can’t push the requests too much or I’ll lose my bargaining power. Must make this a good one. Out came the first thing on my mind – something that’s been on my mind since getting out of the hospital:

Tuesday, September 27, 2011

Review of 50/50 - The Movie

The soon-to-be-released movie, 50/50, starring Seth Rogan and Joseph Gordon-Levitt, has been creating quite a buzz in the young adult cancer survivor community. It's unique and refreshing to have a blockbuster movie focus on such a rarely highlighted, but much deserving topic. Surprise, people in their twenties get cancer, too. Now there's a movie about it, and I think that's great because that means awareness, understanding and action. Let's hope it creates a buzz through the non-cancer world as well. 

I was wary that the movie would be overdramatized or Hollywoodized and would miss a huge opportunity to educate audiences about the young adult cancer world. After viewing the screening in Hartford, Conn. last night, I can assure you that that's not the case. Cheers to scriptwriter Will Reiser, who based the screenplay on his own adventure with cancer at the age of 27.

The film sheds a realistic light on the uncomfortable and frightening dichotomy that is trying to live your life in a world of seemingly invincible, carefree companions, while death stares you right in the face and treatment takes away your confidence and sense of belonging. 

Sunday, September 25, 2011

Rebirth and Redesign

Yesterday marked 100 days post allogeneic stem cell transplant, a tremendous milestone. That means that today is Day +101. Today began the next phase of my newly gifted life, courtesy of science and sisterly love.

I am happy. I am thriving. I am becoming comfortable in my new body. I am humbled by how far I've come. I look forward to where I'm going.

This newly designed website and logo represent the opening of the next chapters in my life as I continue to grow and stretch emotionally, physically, spiritually, and professionally. There is much healing to come, but this project has been a testament to what I've accomplished in the summer of 2011. This website development provided a solace and a focus during my first 100 days of recovery.

It has been a pleasure working with the talented artist Joy Nelson, my cousin, communication designer, and newly minted graduate from the prestigious Carnegie Mellon. Her fresh ideas and ability to bring abstract concept to reality with color and artistry was tremendously integral to the logo creation process. I am forever grateful for her patience, talents and devotion to helping me make this happen.

eyes peeled, always is a symbol of journeys that I have endured and of those that I have yet to experience. I will continue to share my adventures and illuminate those of others in hopes to inspire, educate and connect.

Monday, September 19, 2011

Homecoming and Day +95 Update

I took a blogging sabbatical for a bit as I got my head screwed back on. This is not to say that it's completely in place yet, but it's many rotations closer than it had been.

I'm home. I arrived home on Friday night, September 2. I spent the entire summer of 2011 away: June 9-September 2; A summer in The Big Apple. My last days in the city were spent packing with the help of my mom who stayed with me for the last week and put up with my incredible moodiness as my exit day approached. The last day was primarily spent at the Sloan clinic and waiting in the pharmacy for all of my drugs to go home with. I said an official goodbye only to the Hope Lodge programs manager whom I had grown close with and two men on my floor who wished me well as I cleaned out our shared kitchen cabinet. None of my close friends were out on the roof deck when I left, and I think it was better that way. I was extremely sensitive and in an emotional torrent.

Thursday, September 1, 2011

Kitchen Charades

This morning I stumbled into the community kitchen bleary-eyed and head swooning from nausea. My focus was only to get to our cabinet to scavenge for something – anything – to sate my nausea.  However, out of the corner of my eye I spotted the woman from Turkey, here, along with her three grown children to care for their ailing father. She started up with me right away. I had no idea what she was saying as she speaks zero English. We began a pantomime, a sign language of sorts back and forth. I was not yet fully awake and again, my nausea was fierce. A game of charades was not what I had in mind for 8 a.m., but that is what I found myself playing.

Monday, August 29, 2011

Sunday, August 28, 2011

A Newcomer to the Treatment Game

It's been an eventful week in Manhattan. We had an earthquake, a hurricane, and I started a new novel therapy drug. I've gotten through it all relatively unscathed, except for the nausea and that unmistakable woozy headed feeling that every drug brings.

I'm now a cancer, three-time transplant, earthquake and two-time hurricane survivor (Dean 2007 on St. Lucia and Irene 2011 on Manhattan.) I don't think I'm going anywhere anytime soon. I've got about what? Three lives left?

Wednesday, August 24, 2011

Day +67 Scan Update

I got news yesterday that's pretty much just that: news. It's not necessarily bad, not necessarily good, just news. I prepped for that scan and that news on a blanket under a tree in Carl Shurz Park on the Upper East Side. The park is stunning and magical and it was the perfect place for both Craig and me to get our anxiety in check as we awaited my evening scan procedure.

My PET Scan did show a bit of uptake in two places: in my chest near the thymus gland and on the right side of my sacrum bone. These are two spots that have shown metabolic activity in the past and have been likely sites of disease. However, I do not yet have the full radiologist's report detailing what they think is happening this time around. PET Scans are finicky and ultra sensitive. Potential of false positives is high.

Sunday, August 21, 2011

Day +66 Update

It's time to make some big moves with my treatment. This has successfully sent me up a wall in anticipation, worry, and confusion. Compounding those mental feelings are their physical counterparts. The past two weeks have been particularly rough for me: body aches, chest fullness, night sweats, back pain and increased fatigue. These feelings are not as foreign as the post-transplant side effects have been. In fact, they are far too familiar for my taste and I desperately hope that the lymph nodes in my neck and the tenderness in my back and hips are just my body repairing from the trauma it's been through.

If it is lymphoma creeping back in, it is not the end of the world, but it will make my recovery world riskier and more difficult. I've talked these symptoms over with my transplant doctor and we've decided that rather than guessing at what might be going on, it makes most sense to do another scan. A second scan is normally done around Day +90 anyway, so we're just bumping it up a bit. This way, we can better know what we are dealing with. Is the enemy again on the attack? Or are these just normal body rumblings surrounding all of the adjustments and growth happening inside of me? My doc wants to see diagnostic evidence and I completely agree with our plan.

Saturday, August 20, 2011

Community Living

Most of the time I don’t want to wear a bra. Often I don’t like to wear pants. All of the time I prefer to be barefoot. But none of these indulgences falls under the “acceptable” umbrella at The Lodge.

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.

I’m very tired of rules and more tired of other people breaking them. No one wants their first sight of the day to be a grown, barefoot man walking his germy feets on our kitchen floor first thing in the morning. I’ve got to keep my pants on. So should everyone else. Plus, my intestines are still too fragile to swallow that vision.

Tuesday, August 16, 2011

Why Transplant Patients Have Extreme Precautions

I was getting my sea legs back and felt confident that I could do a little walking out on the streets among the others of my species. Craig had already scoped out a spot that was sparsely populated at 3 in the afternoon, had tables and chairs for us to sit at, and a good amount of people watching opportunities.

We walked the four or so blocks to Foodparc , a cool open area with a massive screen where they show free outdoor movies and such. Beside it is a food court with creative, eclectic, high-end cuisine.

There were open tables to sit at so we chose a high-top – the most comfortable looking of the metal barred options available. It was my first time sitting out in public post-transplant: a defining moment of sorts.

Our perch was the perfect people watching spot. I fashioned a little cushion with my sweatshirt for under my bony, bony bottom and tried not to focus on the sweat swimming between my hands and the blue plastic of my gloves, causing them to stick together like cellophane. It was a sweaty summer day.

I spotted a young guy directly in my line of sight lounging at his own flimsy metal table and chair. He had the tell-tale signs of just getting off work wearing crisp cropped khakis, a pink polo tucked in, but worn with sweat wrinkles along the back from a day in the office chair. The top and bottom were sealed together with a white leather belt. The white Topsiders completed the outfit. Earbuds were in his ears and in his hand a Nutty Buddy ice cream – the frozen treat that comes in a paper cone.

It wasn’t just me that was sweaty. That Nutty Buddy was sweaty too, and there was no way that guy was able to keep up with its perspiration. So he did what any grown man/boy at heart would do, I guess: He licked.

Whatever was playing into his ear buds was hilarious because he’d intermittently toss his head back in the air, mouth wide with a smile, laughing and listening intently, completely in his own world. The oblivion expanded to his Nutty Buddy eating as well.

As fast as the drips would drip, his tongue was there to lick them up. Lick, lick and lick. But I’m not talking about licking just the Nutty Buddy itself. As its cream oozed his mouth followed. There were no napkins involved, just pure tongue. He licked and smacked his lips over every single finger. He stared into space as his tongue traveled to the palm of his hand, licking every last vanilla drip or fudgy remnant up and down the plump pillows of his palm.

I couldn’t believe what I was watching and all I could think about was all the germs that fester on our tongues. Never mind airborne illnesses, this guy was wetting his hand, then the table, then the chair, like it was a postcard stamp. Don’t miss a spot, you don’t want that thing sent back for insufficient postage.

I nudged to Craig who also got in on the action as it got more appalling and intriguing to watch. This man was like a cat grooming itself after a good round with the milk bowl. He was meticulous with every crevice of those paws – yeah, buddy. Mind you, we are at a food court; the options for napkin kiosks and Purell dispensers are plentiful.

He stretched and slid his hands across his table giving it a solid germ transfer – picking up and putting down saliva spread illnesses. At any moment I thought a candid camera crew was going to pop out from behind me: “We gotcha! This is our ‘creep out the immuno-suppressed cancer patient’ episode!” I couldn’t stop staring and I couldn’t stop laughing.

Then no, no, he didn’t … but he did. In his cat-like manner, he guided that agile tongue around the back of his hands. The Nutty Buddy was at its end now. As he licked around the knuckles and in the pockets between fingers he simultaneously folded up the soggy paper packaging that had held his delicious treat.

To my stalking dismay, after one last hand smear across the table he was satisfied with his dessert al fresco and headed out of the courtyard. But not before stopping at the drinking water fountain to rinse his hands off in it.

I watched in horror as one of his saliva soaked hands pushed in the On button and the other rotated under the arched water, periodically hitting the drinking spout. Rotate, rinse and repeat.

Saturday, August 13, 2011

Carry a Rock

My Qigong healer told me after session that I need to get grounded. He said that I'm all over the place flitting around above the air disjointed, confused and unfocused. He told me to carry a rock in my pocket as a symbol of connecting with the Earth. After one day, I've already lost my rock ... .

Thursday, August 11, 2011

Pre-Triathlon Speech to ACS DetermiNation Athletes

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 clichĂ©: 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

Day +54 Update

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.