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.

We share one kitchen with the tenants of 12 other apartments on our floor. That is 24 people. There are bound to be frustrations over fruit fly invasions, eggshells clogging the sink drain, the unidentifiable stickiness on the cafeteria-like tables, the dishwasher, which it seems the same people are always tasked with running or emptying out – or the kicker – when someone throws out our food. I thought Craig was going to pop a blood vessel over our missing frozen Basmati rice. I popped a few over someone smearing the bacteria infested sponge all over the eating tables.

As hard as ACS may try with laminated rule reminders everywhere, it’s the nature of the beast: the beast that is community living and human nature at its best. Everyone’s idea of clean is different, as is his or her idea of tact. There are the people that take care of everything (request more dishwashing soap, paper towels, etc.) and those who wait for everyone else to do it. It’s like being back in college again; there are always those couple of people that you want to avoid a conversation with by taking the long route to class. I’ll be honest. If I hear certain voices in the kitchen, I’ll let my stomach grumble for another 20 minutes to wait for the luxury of a quiet meal. Understandably so, there is no eating allowed in the rooms. This means anytime I want even a snack, I have to put my pants on and at least cover the fact that I’m not wearing a bra and trek down to the kitchen to eat a damn cookie.

And when I’m eating my damn cookie, I just want to eat my damn cookie. I don’t want to talk about my diagnosis, my prognosis, my current eating or pooping habits. One night while Craig and I were eating pizza, a new guy came in and pulled up a chair to our table. After filling in yet another person on why I am here, he says: “Wow, you had an allo transplant? And you’re still here? Everyone I know that had an allo is dead. I’m so f*&^%ing afraid to get one.” I done near choked on my mozzarella-laden artichoke. As much courage as it took to respond to that one, my biggest pet peeve is when people ask me my cancer diagnosis before my name. I bite down on my tongue so much I’m surprised it’s still in tact.

I try to be mean sometimes but then my heart melts for the new people who are scared, lonely, confused, disoriented, and have no one else to talk to. So I kvetch with them a little while trying to make it clear that negative energy is not allowed around me. However, that is difficult to accomplish when I have no space but a hotel room to escape to and holing up in there is not good for my health either. It’s coming up on two months of living here – with a month in a hospital bubble before that, so I realize I’ve become jaded and very impatient. I’m not proud of it, but I admit it and I work on my tolerance and keeping my frustrations properly channeled as much as is possible. Sometimes that is just not doable and I want to talk to no one for fear that I will punch someone in the nose and get myself committed. Some days I don’t even want to be around myself.

Then there are the amazing people that keep me going in my fight and whose company I thoroughly look forward to every day. The people that I want to hug, not punch. I’ve grown close with many and worry about them more than myself. I’ve seen many patients and caregivers rotate in and out of here. I worry when the rice cooker in our kitchen hasn’t been turned on, because that means the Cambodian man’s son is not doing well and he is at the hospital with him. I get worried when I don’t see my fellow transplant recoverers out on the terrace all day: that often means they’ve been thrown back in as an inpatient again for some kind of infection. I’ve seen people packed up to go home thinking they are done, only to see them come back weeks later with the sad news that their treatment didn’t work and that they need more.

Watching people recover and regress from illness in very close proximity can be both an inspiring and a difficult reality to watch. There is not much privacy here. When someone is having a painful day curled up on the couch of the shared living areas, it’s not easy to hide nor to know what to say. I find that I put up walls because some days I just can’t bear to hear another sad story about what someone’s been through. I can hardly process my own trauma and it’s selfish and sobering to hear some of the unbelievable stories of others. Or, to hear the unbelievable ways that others make their situations so much worse by how they focus on what seems to me to be the very worst things. But who am I to judge? I am not walking in their shoes. It doesn’t mean I’m not grateful that I’m not, however. I just need to let them walk their own paths.

I was in the elevator with a woman and her daughter carrying several packed bags. I had never crossed paths with her before. She looked at me and rejoiced: “We’re going home – back to Florida, finally!” She was all tanned and done up with coral lipstick and pearls dotting her neck. “I had surgery and was in the hospital for nine days. It was awful,” she continued. “We are so ready to be out of here.”

I wanted to say: “F&^% you. I was in hospital isolation for 27 days. I’ve been here for another 30 and have possibly another 60 days to go. Kiss my saggy, boney ass.” But that wouldn’t be appropriate, and how could I rain on her parade with my sob story? Hearing that tale will shut anyone up. I’m not in the business of sucking the air out of people’s balloons by comparing their cancer stories to mine: it’s not about comparison. Everyone’s cancer journey sucks in its own way. Instead, I smiled and said how happy I was for her, because I was. How can you not be happy for someone else’s good news? But there is that tinge of jealousy that exists and a little of that unanswerable question: Why can’t I be fixed and on with my life after a little surgical procedure?

What I’ve learned from being in the thick of this, and from talking to others about this conundrum, is that if people are whiners, complainers, elitist, or ungrateful and privileged in the real world, then that’s only going to be compounded and expounded when they are sick and in a less than desirable situation. If people are kind and compassionate in real life, then they will become angels on Earth during this process. There is much to be learned from people on both sides of the coin. Having cancer doesn’t make you a nice person nor does it give anyone the right to be mean: it brings out the best and the worst in all of us. All I can hope is that for me it's the former – at least the majority of the time.

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 ... .

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.

The Breakup

Sounds strange, but good news can be difficult to take. In a way, I feel a loss. Having aggressive refractory disease will do that to you. Whenever good news is delivered about clear scans or positive movements forward, I find myself receiving it with a skeptic’s embrace. I’m thrilled to no end about the condition I’m in right now, but it’s hard to quench the worry that it isn’t a permanent condition. The many, many, many times the disease has begun to retreat only to figure out its attacker and come back within just a few weeks has left me with scars of hesitancy that I don’t know will ever heal. I’m like a timid dog just let out of my very small cage after years of abuse. I need to retrain myself to trust and accept that this battle may actually be fizzling – a slow burn-off, but fizzling into health nonetheless.

I was so naive in December of 2009 when after six months of ABVD treatment against the Hodgkin Lymphoma, Craig and I threw a “Kicked Cancer’s Ass” party. There was no reason to think that I hadn’t. My November PET Scans showed a full response – and a vast majority of Hodgkin patients are done at that point. In January when a cough developed and my chest felt like an elephant was yawning and stretching inside my sternum, I knew the celebration had been premature.

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

100%

Not only am I currently cancer-free, I am now 100 percent Kristen blood, not a trace of my own left. The results of my bone marrow biopsy from Day +32 came in: My immune system has been completely replaced with one identical to my sister's. This is excellent news – and not just because I can now get away with a crime scot-free. The most excellent part is that my new bone marrow is functioning very well on its own. My blood cell levels are in the normal range for the first time in years. There hasn't been any need for transfusions because all systems are functioning well, proving that my sister's donor cells gave me a very strong graft.

She and my mom came to see us in NYC yesterday. It was the first time I had seen her since transplant. Standing next to her I told her that I could feel the vibrations between us, like magnets. She laughed and asked me if I was crazy and I said, yes. But I really could feel it: good vibrations flowing through my veins.

A Productive 34 Days

I drank the red juice and received the radioactive injection into my arm. I laid on the narrow table, arms
overhead, as the machine whirred around me and the table shifted me painfully slowly as images were taken of every millimeter of my body. For 20 minutes I laid there with my legs propped over a pillow pyramid and rolled towels on either side of my head so that it wouldn't move out of the carved pillow it was cradled in.

With each in-breath I said in my head: "I am." With each out-breath: "all clear." I imagined light rays everywhere and healing golden yellow pouring over my cells in the consistency of slow moving, soothing honey rolling over any cancer cells and converting them to healthy ones. My mind would drift to fearful, bad places. My eyes spilled some hot tears down my cheeks with the weight of knowing how important this first post-transplant PET Scan was. Along with my meditation a steady track of that Five For Fighting song, "Superman," kept running over and over in my head: "I'm only a man in a silly red sheet digging for kryptonite on this one way street. Only a man in a funny red sheet looking for special things inside of me ... it's not easy to be, me."

I kept thinking of a very vivid memory I have of being 17 years old and pulled over to the side of the road in my light powder blue Toyota Corolla (pic is from six years later when I traded that baby in). I was crying hysterically into the steering wheel to "Superman" playing on the radio because I was so exhausted and stressed that I had to go from my summer playground counselor job right to scooping ice cream until close at Peaches 'n Cream. How blissfully unaware I was. It made me smile.

Monday night and Tuesday morning were tough as we awaited the results of the PET Scan. Tuesday Craig and I went into clinic and tensely awaited not only the scan results, but my first post-transplant bone marrow aspiration procedure.

Dr. Sauter had just returned from a cruise around the Mediterranean. He was slightly bronzed and whistling and obviously rested. I immediately feel at ease around him, his expertise and his easy demeanor. I was slightly high on an Ativan to try and calm my nerves, was squeezing Craig's hand like it was a speedster's joy stick, and had Bob Marley playing through my headphones. The doctor came into the procedure room where I was on the table my pants were already down, my ass out and skin prepped for him to drill through my hip bone and send a needle into my marrow. He would pull out my stem cells and send them for analysis to see how much of my sister's genetic makeup had taken over.

After the initial pleasantries he immediately calmly and laxidasically said: "Your scan looks good."

I perked up. "What do you mean, good?"

"I haven't gotten the full radiologist's read yet, but from my take it looks like all areas of involvement are gone," said Dr. Sauter.

I could physically feel the weight lift off me, though my buns were still clenched with the anticipation of the marrow aspiration to come.

He looked at my hip bone awaiting him and said: "You're so thin this will be easy," paused and continued "... for me." All three of us laughed and I laid there ironically so at peace with the news of my clear scan while Craig looked on in interest as the procedure progressed and Dr. Sauter muscled and drilled into my bone.

I squeezed Craig's hand harder as the needle went up and down into my marrow and Dr. Sauter kept repeating very soothingly: "Slow, deep breaths; slow, deep breaths." Then it was over and the deep red blood cells from the syringe were smeared onto glass slides to be analyzed. I've never left a bone marrow biopsy smiling as big as I was underneath my mask.

The clinic day continued and we met more formally with the doctor. The radiologist's report came in to officially confirm that there was "interval resolution of FDG avid osseous lesions, right axillary and retroperitoneal lymph nodes." In English: THERE ARE NO SIGNS OF LYMPHOMA. No lesions remain on my sacrum and bones. The spot in my chest is gone. My abdomen is clear. The lead in chemo was effective and my sister's immune system has started working to keep the cancer away.

I am not out of the woods yet and Craig and I both know this all too well. But for right now we are accepting this as very good news. A miracle in my eyes. This is a huge sign that the hellish days I've gone through were worth every ounce of torture and that the gift of life my sister has given me is blossoming inside of me.

This news has done a tremendous amount for my mental and emotional healing. I now know in measurable terms that I am on my way to being healed. I am on my way to being cured of this cancer forever. I am in awe of this science and grateful beyond words.

Allo Transplant Day -7 Through Day -1

After a ridiculously delicious Wednesday night dinner chef-side at The Mill at 2T, Craig and I were hopeful that the creamy centered popovers, beer marinated flank steak, and prosciutto-wrapped frites would help fuel us through the next day–and the months to come of new adventures.

Thursday, June 9, marked Day -7, the first day in my allogeneic stem cell transplant process. And it's a process for sure. Thinking forward to the summer and knowing that Craig would need to be back and forth between New York City and Connecticut on several occasions to check on things and attend events, his Uncle Drew was gracious enough to offer to drive us into the city from his Stamford home and offer up a parking space for Craig's car in their driveway, which now sits walking distance to the Metro North train stop. It worked out perfectly.

Once at Memorial Sloan-Kettering Cancer Center in Manhattan, I checked into the Day Hospital floor where I had my new Hickman catheter line placed. The catheter has three prongs (or octopus dangles, as Craig calls them). This gives the ability for many things to be going into me or taken out of me at once and now that I've been hooked up to this massive IV pump for many days I can see why that is necessary.

The procedure was pretty painless. Unlike at Yale, here they put me under conscious sedation so the process was much less horrifying than when I had the Quentin catheter placed for my auto transplant. The surgeon put a knick in my skin just below the collarbone and shimmied the line down into my jugular vein. It then pops back out lower in my chest and dangles out of me. It is now an extension of me and that extension is constantly connected to my massive IV pole, which has six pumps and two "brains." I have come to call it Jinx, named affectionately after the robot in the fantastically 80s movie Space Camp. We have a love/hate relationship that’s for sure. I love it because it gives me what I need but I hate it because it is cumbersome and clunky, its alarms go off a lot and feels like I’m dragging around shackles.

The line is heavy with the weight of all the tubing against the still tender insertion site. After much experimentation and nursing expertise over the first few days I've found that button-up shirts work best so that I can pop the lines out through the openings between the buttons then pin it up to a yellow tube necklace outside of my shirt to alleviate the weight on my tender skin. On his own accord – and to my total surprise – my adorable husband went to H&M and bought me a couple button down shirts since I was not prepared for this scenario. It makes life a lot easier since I cannot be disconnected, even for a shower. Jinx comes with me and hangs out close outside the shower curtain. I wash up around the tubes that dangle over my belly.

After my catheter insertion I was admitted to the 8th floor transplant unit. The door to my room shut and besides a one time brief escape with the physical therapist, I am not able to leave it. The isolation restrictions here are very tight. After five days in the very awkward and small set-up of my corner room the walls started to close in on me. It was difficult to get around the room with Jinx attached to me. I hit my head on him several times. I had a bed, two chairs, a little counter with a computer, a TV, a DVD player from which we hooked up a Wii, and of course my itty bitty bathroom and shower for me. Everything we needed, but just all jammed in like a jig-saw puzzle. The frustration of the confinement – nowhere to put anything, nowhere to stretch out ­– led to an anxiety attack on day 5 after a particularly difficult fight with the sticky shower curtain and the inability to clean my body without soaking the machine attached to me.

My nurse knew that something was wrong when I was all welled up with tears and told her I had trouble breathing and thought that it was just the anxiety of everything taking over. She asked what it was specifically and I told her the smallness, oh the smallness, of the room. She gave me some Ativan and came back later with the news that a larger room had opened up and it was mine. We moved to the best real estate on the floor Monday night. My view is beautiful. My window faces East and brings in warm morning sun. It’s all decorated now with pictures and books and thoughtful trinkets people have sent me for encouragement. There is a full couch and the bathroom even has a full counter where I can lay out my toiletries and breathe a little in there. The change has done wonders for my mental health. I knew from some insiders to always get your name on the room upgrade list but I never imagined the difference would be so great.

The excitement of the move allowed me out of the room for about 1 minute, but that’s been it. However, there are very few hours in the day that I’m alone. There is the good company of my husband who bikes across Manhattan from the Miracle House, the place he is staying, to be with me for the day. We play games, watch online videos, talk, nap, and encourage each other. We even celebrated his birthday here. A few days later, I had a total surprise visit from my college roommate, Frankie, and herhusband Steve. They live in Virginia so I was completely taken off guard, but they happened to be in Connecticut for a wedding and made a big detour to come see me. That was thrilling! We've been encouraging people to cut out magazine smiles to attach to their mask and this visit officially started the trend.

I’ve also gotten to Skype with my mother-in-law and childhood bestie and “sit in” on dinner/bath routine with my niece and nephew and their parents. These were tremendously helpful escapes.

Last night my parents and sister arrived. We had a brief visit and they came barring all the essentials I had requested – more button downs, lemon drop candies, a biking glove, our mail – the randoms. They will be visiting for the week while my sister has her stem cells collected and to be here through our Day Zero transformation.

The medical team visits are every four hours, all through the night. I’m awoken nearly fully at 5:30am each day for blood to be drawn from my catheter. At 6am comes the earliest morning vitals round and requires me to get out of bed to be weighed.

I see the nurse all throughout the day and get a special daily visit by “the team” of the nurse practitioner and doctor on rotation, which fortunately happens to be Dr. Sauter this week. I see a physical therapist once a week. The dietician and the social worker pop in. I’ve had visits from the Integrative Medicince Department that included a mind-body specialist who coached m on meditating, a reflexologist who massaged my feets, and a music therapist who had a drumming jam session with Craig and me. The nursing assistants ensure that I shower every single day. Someone cleans and disinfects my room each day and changes all of the sheets. Let’s just say there are a lot of people in and out all the time.

Every single member of the team has been exceptional. The staff who work on this floor are all smart, professional, fun, accommodating, and thoughtful. I have no complaints about the care I’ve received here. What they have to do to me to get me through this process is not fun whatsoever, but having kind and competent people as my guides and partners in this makes a tremendous difference. They care for me as if I were their best friend that needed to be nursed to health, not like a “job” they have to attend to.

These first five days leading into transplant have been very difficult. Today, day -1, my day of rest, has been the worst of all as the chemo side effects are starting to catch up. Throughout the week I’ve received Fludarabine and Melphalan chemotherapy, Sacrolimus and Tirolimus immunosuppressants, constant anti-nausea drip, Potassium and Magnesium for nutrition, protonics to coat my stomach; fluid, fluid, and more fluid; Heparin to open my veins Vancomycin, Acyclovair, and antifungual prophylactic antibiotics. I need to shower daily with the surgical scrub Hibicleanse and powder my body’s “folds” with an antifungal prescription powder.

To help with pain of headaches and other ailments I’ve been pumped with morphine and oxycodone. To help with nausea I’m constantly pumped with Zofran and need Ativan at least a couple of times a day to cut the nausea that still comes on top of that. I’ve puked only a couple of times: a solid one my first night though – great way to make an entrance on the floor. I’ve lost all of my taste buds therefore my mouth feels like a have a furry bunny in it all the time: it’s dry and holds an awful taste that permeates anything I attempt to eat, so mostly I don’t.

I pee in a hat. I poop in a hat. I vomit in a bucket. They want to measure, look at and know about it all. My IV tubes are changed every few days and at any sign of a fever or even chills I am cultured from every orifice. Currently there is a question as to whether my Hickman catheter line is infected, as the skin surrounding it is tender and red and it’s now oozing pus. Having that drained today was one of the least fun things I’ve ever had done to me.

My blood counts have just about bottomed out, as hoped. My white blood cell count today is 0.2 so there should be plenty of room for Kristen’s donor cells. The dropping of my red blood cells leaves me very weak and the low platelet counts leaves me susceptible to bleeding. I will soon be low enough to require transfusions.

So that’s really what’s been keeping me busy. When I’m not being prodded I have a little time for games and reading. Mostly, I do a lot of day dreaming about my future out of here and beyond all of this. So far this process has been a tremendous test of my strength and endurance in every way.

The other day I saw two delicate red balloons on long white strings float right past my 8^th floor window. The evening before moving into the hospital, I received a box of 1,000 hand-folded pristine, delicate and beautiful origami paper cranes from an absolute stranger who has followed my story and wanted me to have this most healing and ancient symbol of healing. I take these as signs of the peace and strength and hope that I am looking for.

My younger sister, Kristen, spent today in the donor room hooked up to the apheresis machine for four hours with her arms straightened out by the IV needles within them. One side pulled her blood out, the machine caught it in the middle and filtered out the stem cells, and the other arm received the cells back into it. She’s expectedly tired and in some pain from the five days of Neupogen shots she had to endure, but she went through this all without complaint. And she did well: the lab received many more stem cells than they even need. Her part is now done and I’m so relieved that she made it through safely, though I never doubted her. I love her more than ever for this incredible gift she has given me.

Tomorrow is the big day – transplant day. My body will open fully and let my sister’s stem cells flow in and get acquainted with what needs to be done in there. Of course I am apprehensive and anxious but I know that there is so much love and hope in those cells. We all hope that this selfless act my sister endured for me and the immunotherapy it will provide will be the final key to a cure.

It's a Go for Transplant

The allogeneic stem cell transplant is a go. After several attempts (this is the fourth), it is going to happen. I am being admitted to Sloan-Kettering on Thursday – as in two days – to start the process. The past two weeks have been full of travel and pre-transplant testing, preparation, paperwork, organizing, packing and lots of anxiety.

During the allogeneic (donor) stem cell transplant, I will receive my sister's stem cells, a type of immunotherapy. They will mature inside of me into new white blood cells and will replace my own "broken" immune system with her strong one. The goal is for her defensive cells to destroy and defend against any lymphoma cells within me or any that may creep in while her cells are settling in. I will get five days of lead-in chemotherapy (Fludarabine and Melphalan) along with some immuno suppressant drugs primarily to weaken my immune system enough to let hers in. Hopefully the chemo has some anti-lymphoma effect as well, but it is really the donor stem cells that are my next form of therapy.

I am not in "perfect" remission, but after much review from the top docs in the world it was decided that this is the best time and the best shot. I had a good response to my last therapy, considered a "partial remission," and may never get this clear again. My track record has shown that the lymphoma I have is aggressive and adaptable and comes back after every treatment drug even with an initial response to it. It's unknown whether my body could handle any of the few chemo regimens that are left to try without damaging it permanently and forever closing my bridge to transplant. So, here we go. The time is now: we've got to jump on the chance that we have.

I am feeling relatively strong right now, rising back from the very difficult clinical trial drugs. My sister is in the best shape of her life as she's been hiking in the mountains of Nevada all day every day for work. All has happened very quickly. I got the final word that we were pulling the trigger last Wednesday at 6:30pm and my sister hopped a cross country red eye flight from Vegas after her roommate had to drive into the boonies of the Spring Hill Mountains to get her off the campsite. She made it into Sloan-Kettering to complete all of her donor testing the next afternoon. She is here, safe and ready for action. My Sloan transplant doc, Craig Sauter, has been AMAZING in pulling strings to get the logistics moving so we don't give the lymphoma any longer of a window to grow back. I am extremely confident and comfortable with the team there and have nothing but good things to say about them.

On Thursday (Day -7), I'll get a minor surgery to insert a different type of catheter line in my chest so that I can receive many things into my body at once. On Friday I will start the lead-in drug therapy. In the meantime, my sister will start her Neupogen shots at home with my mom on Saturday to stimulate her bone marrow and push her stem cells into her blood stream.

After five days of chemo, Thursday June 16, will be transplant day (day 0). My sister will be hooked up to the apheresis machine at Sloan to pull out her stem cells and the bag will then be brought up to me on the transplant floor to be sent into my bloodstream. By the time I leave the hospital the hope is that I will have 100% Kristen blood ... pretty close to tiger blood.

My sister is a tough, capable and strong woman. She is a tattooed rugby player who chisels rocks and chain saws trees to blaze hiking trails for a living. She's worked and camped in the Southern California desert for 10 days at a time and now camps with her crew nightly in the Nevada mountains – one evening being so cold they had to do the penguin huddle for warmth. I have no doubt that her stem cells will kick some lymphoma ass once we get them in there and no doubt that she will breeze through this process. However, as confident as I am that she'll be okay, it doesn't make it any easier to watch her go through this and to know the pain and the worry that surrounds her. It's extremely difficult to watch my little sister endure any hardships and to think that I'm at the center of this one can be unbearable at times.

After the actual transplant day (day 0), I will be in an isolation room not allowed to leave for 3-6 weeks depending on how quickly my blood counts recover and if I am eating and drinking on my own. I can have limited visitors as long as they are not sick, nor been around anyone that has been sick, and they have to wear a mask, gloves, and gown while in my room. My parents and siblings are planning trips and I look forward to their companionship along with funny movie watching, Wii games, lots of writing and the visits from Integrative Medicine practitioners – I hear the foot massages they provide are fantastic! In all reality, as crazy as it makes me to even think about being locked up in that room, I'm sure that I'll be kept very busy with doctors, nurses, PCAs, physical therapists, dietitians, social workers, art and music therapists, meditation therapists and all that comes with a prolonged hospital stay. I'll have my laptop and internet connection, which will certainly be a saving grace. And of course, my husband with me by my side.

Once released from the hospital, I'll need to stay in NYC for another 60-100 days so that I'm able to be closely monitored. I'll need to go back to the clinic for checks very frequently. Craig will be hopping around the city for overnights in the beginning, but once I'm discharged, we'll be staying together at the American Cancer Society's Hope Lodge. Summer in the City it is! Once I'm out of the hospital, I'll be able to be outside and do things, often with a mask and gloves and super precautions, but I will be able to be active and recoup. I see a lot of time on blankets in Central Park in my future.

It will be tough and of course there is some fear associated with the risks, especially of graft vs. host disease that can come with my sister's cells attacking my body's healthy cells and systems, but I am very hopeful. Again, she is a perfect match to my DNA so the risk is much lowered. The doctors will constantly be controlling her/my immune system with immunosuppressants as things progress. Dr. Sauter explained it like letting a team of horses in – they'll be out and running, but we'll have the reigns to pull back on if they go too wild. It'll be a delicate balance of giving them enough, but not too much, freedom to do their job. There have been many signs revealed to me that this is the right time to throw my ace in the hole and take a chance at a forever cure. I have a lot of positives going for me and my particular case. Despite being nearly seven months since we first tried for this transplant, I actually feel stronger and more ready than ever. It didn't feel right those first several times but now it does and that must mean something.

I'm certainly exhausted and highly sensitive, worked up and unstable as I try to get everything in order, but with each day and each check on the To-Do List, all becomes less menacing. I will miss our home, my comforts here, and my Sammy dog very greatly – that will be one difficult goodbye. But mixed into all of this week's preparation has been some wonderful moments as well. Craig and I floated our kayaks down the river. Sammy and I hiked all the way to the ridgeline lookout (something I haven't been able to do in quite some time. It took me many rest stops to catch my breath, but we did it). I've been reunited with my sister. The weather has been unbelievably perfect: hot, sunny, light breeze. I saw one of my favorite artists Ray LaMontagne play in Central Park and I met John Mayer there, touched his arm and told him I loved his music. Friends came over with an incredible meal for us. We got to spend time with our ridiculously adorable niece and nephew and catch up with my mother-, sister-, and brother-in-law. I've had daily breakfasts in the morning sun on our porch. I'd say that's a pretty good start to summer.

I have a day-and-a-half of freedom left and a lot of clothes to pack, but I'm learning that I don't have to figure it all out right now, everything will work out in its own time. I'm grateful that I have this shot and I'm going to take it no matter how scary it is. I know I can handle it now. The future holds too many unknowns and the past has left me with many scars to deal with. I don't want to miss my train out of this. Let's roll.

Partial Remission

The experimental drugs LBH589 and RAD001 did their jobs. As tough as it was to be on this aggressive clinical trial, it was worth every, every, everything. It was worth every ounce of pain, fatigue, aches, tears, emotional rampages, nausea, weight loss, dry mouth. It was worth every long, cramped plane ride, every shot, every blood draw, every piece of endless paperwork and every sleepless night. Now I can see as clear as day why my body has been so wrecked and tired. Now I know that it wasn't the lymphoma growing, it was the lymphoma retreating and my body working tirelessly to get everything back into harmony.

The drugs have reduced the lymphoma problem areas in my body by more than 50 percent and eliminated some hot spots altogether. The cancer presence is not completely gone, but my PET and CT scans revealed a very, very good response; it's virtually nonexistent. The trial team in Texas was extremely pleased about the affirming science and very happy for me. The response is so good that MD Anderson has taken me off the pills and has signed off to send me onto allogeneic stem cell transplant at Sloan Kettering.

I know I have a huge treatment journey ahead of me still – arguably the biggest leg yet – but for right now I am relieved and thrilled to the core. I am finally ready. I am one huge step closer to the ultimate goal of long-term remission.

Back to Big Texas

I fly back to Houston, Texas, on Sunday to fulfill a whirlwind day of tests required for the MD Anderson clinical trial that I am on. I'll undergo a long series of diagnostics tests on Monday: bloodwork, chest x-ray, CT Scan, PET Scan, EKG, etc. Then I'll meet with my doctor and his trial nurse to go over all the results. She and I have been in touch via e-mail nearly daily since I've been at home with the drugs. This will be the opportunity for them to examine me in person and hash out face to face how my body is handling this

Oh, did I mention I'm getting a PET Scan to reassess the lymphoma presence? Silly, I didn't even realize that, must have slipped my mind. Ha. Far from it. It's at the very forefront of my mind. The scanxiety has again set in. Monday will mark two cycles on the Panobinostat and Everolimus novel drug combo. Per clinical trial protocol it's now time to see if they are working and I should continue, if they are not and I need to seek different drug options, or, if it's all clear and it's time to move – very quickly – to allo transplant. Or, some different development that carries a new adventure altogether.

To avoid redundancy and the toll it can take on my body, my transplant doctor at Sloan has agreed to read the PET Scan from MD Anderson. He'll collaborate with my team there to make the call on my best next steps.

I had planned to go it alone this trip, but last night, after further talks with my husband, we realized that this is not the time for me to be cocky pants. He wants to be there for me and having him there will alleviate a big amount of the stress of travel, paperwork, appointments, airports and taxis.

I need another set of ears and eyes and the strong, comforting arms of my hubby. I hate to admit it, but my capabilities and endurance have taken quite a toll and I need to adjust to those new levels. I will be receiving hugely important information and quite honestly I don't trust myself to be able to take it all in on my own – good or not-so-good news. Craig has a great ability to take care of things when my body or mind or emotions zone out or pour out, whatever the case may be. This CEO needs her EVP for this trip. Notice, I'm not demoting myself, I'm still top dog, obviously. But it's okay for me to accept help. Okay, but not easy. I've always had trouble with delegating.

People ask me if I think the drugs are working. The answer is that I don't know. This time, I truly have no idea. I can no longer tell the lymphoma symptoms from the drug side effects as the drug side effects are so unpredictable and undocumented. I have a great amount of hope that this did the trick, but I'm also realistic. I have been feeling pretty awful, but then again, I've taken potent, powerful drugs just about every day since April 1. These novel drugs are not constructed to make me feel good. They are constructed to block and reprogram the protein cells that are telling this lymphoma to grow. I'm just caught in the middle and absorbing all the reverberations in whatever form they take.

Whatever happens, I cannot ever say that I did not try my absolute hardest. The worrying will get me nowhere, and I'm doing my best to keep it at bay. I couldn't think of a better way to do that than to spend tomorrow traveling to Rhode Island to see my little brother graduate from Roger Williams University. It'll be a beautiful celebration and such a welcome reminder of all the positivity, hope and new beginnings out there to be enjoyed.

Sunday, we jet set. I hope to come back with some answers and direction.

First (Re)Birthday

Today marks one year since my autologous stem cell transplant. It's incredible to think that a year has gone by and about how much has happened since May 18, 2010 – my Day Zero. This month also marked the two-year anniversary of my Hodgkin Lymphoma diagnosis: May 8, 2009.

I haven't been able to fully reflect on how much has been rebuilt, grown, and evolved since then as it's been an essentially continuous treatment ride since. But what I can reflect on and rejoice in is that I've survived and thrived and continue to live, and live fully, with this disease. I'm more appreciative and aware of everything and everyone around me and for that gift I am forever grateful.

However much overused, I think this is the perfect opportunity to post one of my favorite songs of all time. Who knew how much my pre-cancer affinity for Rent foreshadowed my real life and the themes that have arisen in it? I couldn't say it better myself, Mr. Larson.

Today - with my growing crown of ringlets, which I've come to adore (May 18, 2011):

Stem Cell Collection - 12 million stem cells harvested (March 2010):

Day Zero (May 18, 2010) receiving back my 6.5 million stem cells that would rebuild my immune system and allow my body to recover from the toxic chemo of the weeks before:

Autologous Stem Cell Transplant 10-day inpatient recovery (May 18-May 29, 2010):

The very beginning (recovering from my first lymph node biopsy, May 6, 2009):