eyes peeled, always

Intentions 2012

2012-02-01T12:56:00.002-05:00

New Year's Day on Sunset Cliffs, San Diego, CA, crafted by Craig and me.

It is February 1st. January just came to a close, but I believe there is still time for a “NewYear” reflection blog. Instead of writing my reflections and intentions withthe start of the new year, I’ve been reflecting for the first 31 days of 2012. Soundsgood, doesn’t it?

I’d like to say that I planned it that way, but I didn’t.It’s putting a spin on procrastination and avoidance to make it look likeintention. To be honest, being about a month behind is about right for me thesedays in several respects. But that’s okay. Time has slowed some, procrastinationand hesitation have increased. Focus has dimmed and concentration hasbeen lacking. Shiny object over there? I’ll follow it. I am so tired most days that it isdifficult to get to things that I think I most want to do. Though, I’ve beenfinding myself very busy with a full, rich, rewarding life. Despite thephysical weights, I’ve had an incredible start to 2012. Maybe what I thoughtwas important to me isn’t really. Overall, I’ve been trying to just let go and "be". I’ll never figure out the outcome of all this, so I may as well enjoy the hell out ofthe ride.

I truly have been writing this blog in my head for the past30 days. I’ve thought incessantly about putting fingers to keyboard and gettingit out, but for whatever reason, it isn’t until this arbitrary deadline of theend of January that I’m able to produce. Deadlines really do help. Because it was gestating for a month, it's a big baby.

I looked back at my post “Intentions” written last year inearly January. I see where I was coming from and I remember being in thatplace, but it reads like an entirely different person. I sound so young. I cannotbelieve the evolution that 12 months has brought and at the same time howquickly this year went by. I thought that I went through a lot in 2010. Ha.2011 is a year to remember in many ways.

As I started writing this, I jumped to the “looking forward to in 2012” section first. That piece flowedlike water. The looking back at 2011? Not so much. It’s still raw and delicateand difficult for me to process. But once I got into it, I couldn't believe all that I've done. Medically speaking, 2011 was a year of utmost focus, plowingthrough like a pile driver. In that post from Jan 2011, I stated that myintention for the year was “to bemindful in everything that I do and fully invested in each experience – fromthe simplest to the most complex. To live each day with intention and an openheart, grateful for every moment that I have.” I fulfilled that promise tomyself to the extreme.

I am proud to say that I lived 2011 as intended. It’s animportant disctinction to say that things didn’t happen as I “expected,”“planned” or “intended”, but that how I reacted to them did translate through. Idon't think I grasped what that meant at the beginning of the year, but 12 months of experience brought it into sharp focus. The year was wildly uncomfortable at moments, but Ilived those times to the fullest, whether it was on my knees in tears beggingfor mercy or staring at the desert from 8,500 feet up on the peak of the San Jacinto Mountains in Palm Springs, CA.

I didn’t know what a prophecy last year’s intention wouldbe. I wouldn’t have made it through without that mindful focus and fullinvestment in the life-altering choices and sacrifices that had to be made. Whenyou are missing your health and it takes every ounce of strength to perform most anyactivity, then mindfulness comes easily. It’s easy to fully absorb the wonderfulmoments and too easy to fully absorb the difficult ones as well.

I was 100 percent invested in all of the experiences I had lastyear – and for the growth that those experiences brought me, I am so grateful.My heart also opened wider than I ever fathomed it could. It opened wide so that I could let more people in, including my true self. It opened so wide thatit hurt sometimes – it’s tender in there. It opened up wide enough to allow meto feel emotions that I never felt before: sheer fear and deep sadness andhelplessness as strongly as the elation, determination, drive and joyfulness. This was a gift.

The donor transplant I underwent in 2011 remains difficult to process. I was talking to another friendwho went through the same ordeal. We were talking about whether we should haverecorded that time. I sometimes regret that I didn’t keep a diary of each day,but other times I think to myself, maybe it’s something that I was meant toforget. Those awful, intimate details are something that I don’t want to reliveand maybe I don’t need to “process” them. I remember the tender moments, themoments of deep love and great gratitude for the special people in my life and themedical staff who became family to me. If that is all I remember, then I amokay with that.

Now that I’ve put in words all that happened in 2011 Iremember and I see much more clearly the wonderful, beautiful, unreal thingsthat Craig, my family and I went through as well. There were a ton of verypositive and very surreal moments. Much serendipity.

I also believe that I reached my lowest at the end of 2011. Ilost access to myself and became a person that I didn’t know. November and December werethe most trying months of my life to date. Dr. Dailey phrased it well sayingthat often cancer patients hit an “emotional nadir.” It is a natural part ofthe treatment/healing process, especially a process that is as long and arduousas mine has been. I like this because it is terms that I can most certainlyrelate to. In chemotherapy, the “nadir” is the time when the blood cell countsare the most depleted after each cycle. Then, they begin to regenerate afterthe initial blast and retreat.

My hope is that now that I reached my nadir, it is only positiveregeneration from here. I inevitably had to break at some point. I believe thatthe regression started happening when I broke my foot in September afterenduring so much physical pain and rebuilding during the summer. It caused mefurther frustration and loss of independence. Then, when the November biopsyrevealed with hard evidence that lymphoma was still growing and I had to getback in the game, I really lost it. Anything since my transplant that feels outof my control or puts any limitations on me is something I have greatdifficulty handling.

It’s almost like I grew huge wings after regenerating mybody with transplant and I need to spread them far and wide. No one will clip my wings. Ever.But I needed to learn how to lift them and how to flap them. I was off balanceand couldn’t take flight. I am now strong and understanding of myself enough toknow how to work the wings. I’ve startedto lift their weight. I am not yet soaring, but I can visualize myself flyingthrough the clouds. There was a very dark period there where I couldn’t seethat. It was as if someone physically nailed down my wings – more and morenails kept coming to further cement me to the ground as more tragedies happenedall around us. The more that I struggled, the tighter the nails gripped. It made meangry and sad and resentful of everyone and everything flying around me with easewhile I lay there broken.

Angels in America Part I

What do I do with the tremendous weight of these wings Ihave been given? When they first painfully appeared, they weren’t the weight offeathers, but instead concrete. The tremendous pressure of carrying those wingswas too great. I was given this precious new life with the gift of cells frommy sister, of the science and knowledge of my doctors and the researchers whomade it happen. Everyone wanted me to survive. I wanted to survive, but I alsowanted to quit sometimes. But how could I? I was reborn but didn’t know my ownbody and my mind couldn’t catch up with this quick, unnatural transformation. So manypeople wanted for me to be okay. Maybe physically I was, but mentally andemotionally I was not. I was in crisis. One of the most moving plays I’ve everread and seen performed is Tony Kushner’s “Angels in America.” The cover artworkof those plays: Part I and Part II is something that has always resonated withme and now is exactly what I am describing. At the end of Part I, a propheticangel crashes through the roof proclaiming: “The Great Work Begins!” The transformation can be seen from Part I to Part II's cover artwork. For me, it hasbegun.

Angels in America Part II

In 2012, I am working on incorporating this disease into mylife rather than allowing it to be my life. In broad terms, I had no choice butfor this to be the case last year as it dictated so much of my life, includingand especially my environment. It kept me away from my home for a quarter ofthe year – probably closer to half if I added up all the travel days to NYC. Nowmy mindset is shifting, along with that of my doctors to a focus on treatingthis as a chronic disease that we may not eradicate fully, but that we can finda way for me to live a high quality of life with: like someone living withHIV/AIDS or diabetes. There may not be such a hard and fast endpoint, but thereis still much hope and potential for long-term remission. If not that, thenmany more years of quality of life with maintenance treatments that areendurable and less invasive.

My intention for 2012 comes in the form of a Joseph Campbellquote I came across while grappling with the difficult life events at the closeof 2011. It is a simple concept, yet an intention that will take much consciouswork to make my every day reality. I want to stop trying to assert control in asituation where no one can possibly have control. I want to stop allowing the“life-or-death” mode of reacting and decision making from seeping into otherparts of my life and to do things without worrying so much about the outcomes. Iam up to the challenge and look forward to the rewards it will bring when Ilook back on it next January.

2011 Highlights and Milestones:

Worked throughout the year with my childhoodfriend, Lisa Bourque, who is now a certified professional life coach and ownerof Wild Heart Coaching. She helped me process and focus many difficultscenarios. I am forever grateful for her guidance and the discoveries we madetogether and for the patient phone talks she had with me and in person during my drug induced timeat the hospital and upon many visits with me at Hope Lodge.
Geared up mentally, emotionally, and practicallyfor donor transplant at Sloan Kettering in NYC twice last fall and winter before finally finding theright time on the third attempt when I began the process on June 9
Packed up and relocated with Craig for fiveweeks to Houston, Texas to participate in a clinical drug trial
Feasted on real Southern BBQ
Adapted to a completely different way of lifeand incredibly hot and humid temperatures
Saw Sublime, Kenny Chesney, Pat Green and Kingsof Leon perform for free courtesy of Houston NCAA basketball championship mania
Navigated this new city with Craig: found anapartment, learned the bus and light rail system, got a handle on the massive campus that isMD Anderson Cancer Center
Went to my first Red Sox game – not at Fenway,but at Houston’s Minute Maid Park
Reaped the benefits and hospitality of twoamazing friends (Betts and Brenna) who opened their Houston apartment to us,let us borrow their car, fed us, kept us laughing, taught and entertained usfor nearly two weeks as my body got used to its new drugs and we got outbearings
Witnessed our home state UConn Huskies win theNCAA National basketball tournament and three other incredible games, while wewere in Houston, thanks to some very generous families from West Hartford. The Huskies were there when we were there – of all cities in thenation
Saw Lady Gaga in concert and got to witnessCraig’s cousin Lauren perform alongside Gaga. Again, in Houston, of all citiesin the nation, at the same time we happened to be living there
Traveled to San Antonio with Craig where we floated down and dined along the River Walk
Traveled to Gavelston, TX, when my parents came to visit our temporary home and we duck boated through the city and I swam in the salty water of the Gulf of Mexico
Celebrated my first autologous stem cell transplant birthday on May 18
Our niece, the beautiful baby Anna, was born! I've had the honor of watching her grow and watching our nephew Jake take on the role of big brother and big boy as we've witnessed Eric and Rachel grow into even more amazing parents.
Saw one of my favorite singers, Ray LaMontagne in concert in Central Park from prime VIP seating. And, saw John Mayer there viewing from the same spot, told him I love his music and touched his arm
Humbly accepted the ultimate selfless act my sister made for me,enduring days of painful Neupogen shots and an afternoon on the aphaeresismachine to produce a bag of 11 million stem cells to save me. The cells that wouldbring me a new, strong immune system after my own had been wiped by chemo. They went into my body on Day Zero (June16) without any problems and have been fully accepted and integrated.
Made it 28 days as a hospital inpatient in aquarantine room that I was not able to leave. And those who were brave enoughto visit me there (my parents, sister, brother, friends: Kristen R. (who watchedBeauty and the Beast with me – our childhood favorite), Lisa, Meredith, Seth,and John who came in to throw me a birthday party, and of course Craig who wasthere every day, wearing constricting masks and gloves toenter and stay around me. But they did. And that is love.
Mustered the strength to get out of thehospital bed, showered and sat up on the couch and in the chairs Every. Single.Day. I knew that the bed would be the enemy to my healing so I spent as muchtime out of it as was possible.
Lost my hair down to bald again, brows and lashes too. It has all grown back and it is curly, curly, curly again
Endured 28 days of hospital food – many mealstwice – as most all of it came back up. But I learned to ask for the “Chef’s Special’s” menu – that was whereit’s at. That and the potato soup. Even though I ended up wearing it a fewtimes, it was still good.
Had my bottom lip fall off bloodily andpainfully – twice
Had another Quention cathether inserted into mychest (under anestehesia for this transplant, gratefully). Then had to have asecond inserted when I was at my very lowest and the one in my chest gotinfected. Out they ripped it and in they jammed another.
Was totally dependent on pain medicine for thefirst time in my life, procuring my own pain pump. My bladder was so irritated that I also was dependent on a little Johnny next to my bed as I couldn’t makeit to the bathroom. Poppable heat packs for pain sites in my back, jaw andchest were a staple as were sanitary napkins and the Cottonelle wipes and softtoilet paper from heaven that my mom brought me for my terrible days ofincessant diarrhea
Fluctuated 10 pounds day to day from all thefluid I was carrying and learned how to walk on my heavily weighted joints
Learned the meaning of freedom on July 6, myrelease day. The Manhattan air and hot summer sun felt ethereal as it envelopedme for the first time in a month. I cried and cried for sheer joy to bestanding on my own two feet on the sidewalk that I had been staring down atfrom my hospital room perch for so long.
Wore a mask and gloves every time I stepped onto Manhattan streets for three months – during one of the hottest summer heat waves on record. I had many encounters and stares wearing my protective gear, but I managed to steer clear of any infections while my immune system developed and still got to explore the city
Saw a favorite band, Guster, perform in Central Park while masked and gloved from a blanket with Craig and our dear friends Seth and Lisa
Lost my grandmother to peritoneal cancer duringthe most difficult summer of my life. I couldn’t be there to say goodbye asbadly as I wanted to be
Had my first clear PET Scanimmediately following transplant, albeit it was short lived
Was humbled over and over again by theoutpouring of support Craig and I received at our home, in Texas, and New York– the cards with words of encouragement and the exciting packages withuplifting gifts never stopped coming whether we were down South, in thehospital, or living at Hope Lodge. They said we broke the record for the mostmail received at Hope Lodge NYC and on the Sloan transplant unit
Developed an even deeper appreciation, respect and love for my parents.
Was warmed by those who took our Sam Dog intotheir homes without hesitation and made her a part of there’s (Melissa, Ryanand Serena, Mr. and Mrs. Wolfe, and our neighbors The Wests). I learned how much I desperately love thatcrazy dog and to know she was in the best of hands was so assuring.
Lived with Craig and with rotation subs in bymy mother and brother at American Cancer Society’sManhattan Hope Lodge along with 100 or so other cancer patients of alldiagnoses, treatment paths, ethnic and cultural backgrounds. I shared kitchenswith these strangers, napped on the same couches, sang by the piano together,griped and cried together, learned from and inspired each other. It was a placelike nowhere else.
Learned the healing art of Qi Gong with avolunteer healer each week who helped me work through my emotional and physicalpain
Honed my yoga practice to accommodate my healing body with the work of volunteerSalvador from San Francisco who would come to Hope Lodge to work with patients– though it was usually only me in class. In the beginning I couldn't even lift my left arm I had such a bad hematoma from the catheter trauma
Fell further in love with my husband to a point that brought me to shaking tears one day in the hospital I was so overcome with the emotion of having him by my side, always
Tried out Improv Comedy with the hilariousgroup Cherub Improv that would come to entertain those of us living at HopeLodge
Celebrated four beautiful years of marriagetogether with Craig on a Rickshaw tour through midtown and Central Park by aman who knew every movie reference in the park (especially Ghost Busters)
Endured a painful bone marrow biopsy whichrevealed that my sister’s donated stem cells had fully engrafted – I am 100%Kristen. I had a perfect immune system replacement and all of my blood cellcounts have been flourishing
Was honored to speak to dozens of athletesfrom American Cancer Society’s DetermiNATION program as they geared up tofundraise and complete the NYC triatholon.
Became a germaphobe and a food safetynazi to protect my newly minted and very delicate immune system
Along with my mother, survived Hurricane Irene withstocked-up nonperishibles and little flashlights in a strange building withcompromised and confused cancer patients from all over the world. It wassurreal to see the streets of midtown completely abandoned with all storesboarded up in advance of the storm. It was eerie and utterly beautiful to takea walk together while the winds were still calm enough.
Felt the fluke earthquake that hitManhattan, though I was so tired and uneasy, I just blamed it on my symptomsuntil I saw the New York news that night
Dropped down to 106 pounds and could not faceany food even after I returned home. I’ve since gained back nearly 10 and am sittingcomfortably at 115.
Broke my left metatarsal bone in my foot andwas forced into a boot for two months, crutches were not as fun as I imagined. But you know what? It healed and I don't even think about it anymore
We lost Linda, my mother-in-law, as she foundthe end of her long journey with Multiple Sclerosis and breast cancer
After months with dozens of low-microbial dietresctrictions I can now eat whatever I want, whenever I want, wherever I want.I’ve discovered how much I love healthy food and cooking from scratch.
We had a beautiful Christmas at celebrations withfamilies from both sides, though it was difficult missing the women that wereso dear to our lives. I cried as my Dad did the traditional reading of “TheNight Before Christmas” as I felt so warm and cozy inside snuggled around myparents, Craig, my sister and Sammy dog. I cried because I didn’t want it to bemy last Christmas. I want to see the lights of our beautiful tree again. Thisyear we adorned it with the 1,000 cranes that were made for me before I enteredtransplant by a total stranger. It was stunning.
Craig and I traveled to the West Coast for thefirst time, exploring the deserts of Palm Springs and Joshua Tree Park viaHummer Tour, Los Angeles and San Diego. We got to take this trip due to the generosity of two wonderful friends: Jon and Nicole, who gifted their Time Share exchange to us. Each city brought with us the chance tospend time with friends that we cherish deeply: a few from childhood and anothercouple that we’ve only recently met and feel like we’ve known forever. The beautyof those cities brought us back some great perspective and a great close to 2011. It was in San Diego – our new favorite city – that we rang in the New Year. It’s hard to think yourproblems are significant under the drop back of awe-inspiring mountain rangesand ocean cliffs.
Shockingly, we lost a friend on New Year’s Evethat was dear to Craig and whose family – especially her brother – we are bothextremely close to: the man who introduced Craig and I back in high school. Itis painful and heart wrenching watching him and his parents struggle after the very tragic loss oftheir sister and daughter
Been humbled and honored by the newfriendships that have sprouted over this past year – friendships that neverwould have been made if not for the extenuating circumstances that I am in
Tapered off of immunosuppressants veryaggressively but safely, never showing signs of any severe GVHD reactions
Been on three more chemotherapies (targeted and traditional since finishing transplant) and am still going
My faith in the kindness of humanity has beenaffirmed 20-fold – just take the example of the mysterious elves who droppedgifts and poems at our home every night for 12 days bringing us so much joy andlight at a very difficult time. They were total strangers to us and now we holdthem very close in our hearts and hope to be lifelong friends. What a wonderfulopportunity for Craig and me to be able to pay it forward.
Watched a dear friend waver through pain andgrace as her mom slipped away to peritoneal cancer and left us in December,just a week or so after Craig’s mom died
With the great help of Craig and my college roomie, Frankie, who came up from Virginia, and did most everything to prepare for the party so I could rest, we hosted another highly successful rendition of the Diamond Holiday Bash. Fantastic!
My body began – and is continuing – to behaveoddly as my mouth flares with white growths and tracks and my body flares withred, hivy ashes, all over, at any given time. Is this signs of Graft vs. HostDisease? We’re not sure. If it is, we’re probably getting some Graft vs.Lyphoma effect happening there as well. The lymphoma is likely being taken downby my new immune system – it’s starting to buck and flare as it realizes thatit’s not in its old home and going after my systems like enemies. We’ve got toget it to go after the lymphoma. We just have to.
I learned a tremendous amount about science,research, targeted therapies, drug companies, refractory lymphoma, T-Cells,stem cells, Donor Lymphocyte Infusions … the list goes on and on. The bottomline is there is some sexy refractory Hodgkin Lymphoma research going onright now, and I’m at the cusp of it, eager to get onto the next sets ofclinicial trials when the time is right and to know when the time is wrong.
Despite all of my initial wavering about it and my hesitation to talk to anyone during my first two years of treatment, Imade the big decision to start seeing an oncology psychiatrist to get myhead in check. It has been the best decision I have made. We see each otherweekly and are the perfect fit for each other. He has been a trememdous help inteaching me how to eliminate this “it”, this ball of anxiety, and allowing meto find me again. I am so proud of the work we’re doing on that leather couch andof how far I’ve come in just a few weeks. Our talks have been instrumental tomy healing process. Having a professional, third party to talk to that is intimatelyfamiliar with all of the issues I’m going through is invaluable. Plus, we hitit off so well that it’s easy, comfortable and not intimidating at all as Ithought it would be.
I love my body's resilience more than ever. I've went from not being able to walk up stairs to hiking all over California. How can I beat that?

So Far in 2012:

Learned how to tie climbers' knots and scaled indoor rock walls and belayed for myhusband
Learned from my mom how to knit (the beginnings)of a scarf
Learned from my brother and his fiancée how toshoot a 9mm shotgun and covered the target pretty well as a first timer at theshooting range. Great stress release!
Started working with a health and wellnesscoach, Ashley Gutermuth, who runs independently healthy at www.independently-healthy.com.We graduated college together and I’ve been so impressed by the knowledge thatshe’s given me about juicing, cancer-causing sugar, anti-inflammatory diet,cooking in advance for the week, foods that can help my chemo symptoms, thebenefits of essential oils and we’ve only just begun the program. I lookforward to traveling this wellness path together.
Both Craig and I are juicing nearly every day now andare finding the energy benefits to be incredible

Looking Forward To in 2012:

Next week I will start back up with the LIVESTRONG program at the YMCA, working with two very special personal trainers. I only hope that my treatment doesn’t interfere as it did last time around.
A piece of my writing will be staged byprofessional actors and set to music in New York City in April. The short,humorous piece was chosen by a panel of judges in Sloan-Kettering’s Visible Ink program.
I plan to pitch more stories to publications andpublic readings and hope to find success enough to build a solid freelancebase that gives me the freedom to work while focusing on my health and all of its demands. This includes furthering my work with writing, social media and communications at Hartford Hospital, though on a less rigorous basis – full-time work just isn't feasible right now because of my treatment demands and side effects.
This year I will take the steps toward bringing this blog and its stories to a published memoir format – exciting and scary.
We are traveling back to Los Angeles, CA for a weddingthen to Nevada to finally see my sister and her habitat, along with my parentsand brother and uncle. There are a couple days in between that I am planning some "Karin time" in Cali.
In June, (as long as I can get the doctor sign-off) I am attending a Surf Camp with First Descents, a fantastic organization that gives young adult cancer survives thechance to take the reigns, rebuild their lives and rediscover their strength.Becoming a “surfer chick” has been a lifelong goal of mine. I am stoked beyondbelief.
My little brother is GETTING MARRIED, likelythis fall, to a woman that we love and admire. He told me at our holiday partythat he was saving up for a ring and that he was going to propose. This newscouldn’t have come at a better time. It filled my heart with deep joy. When hecalled me last week to tell me that he dropped down on his knee on a randomWednesday when he couldn’t contain it anymore I cried like a big baby.
In addition to my brother’s wedding, we have many others on the calendar for the summer and fall. I am a bridesmaid in oneLabor Day weekend. Two more of my dearest friends got engaged over the holidaysand likely will be married this summer as well. That’ll be seven celebrations andcounting to look forward to. Another packed wedding season will make up for thefive that I had to miss last year while recovering from transplant.
I turn 30 on June 29. Many say that they dreadturning 30, that it sounds so old, that they don’t want to admit that they areno longer twentysomethings. I am thrilled to be turning 30. There have beenmany times when I didn’t know I would make it to 30 and when the day comes, Iwill celebrate ‘cause life is short but sweet for certain, as Dave would say. Notonly will I turn 30, but I also turn 1 year old. Living one year after anallogeneic stem cell transplant is a massive milestone. When that day comes –June 16 – I will be so humbled and joyful. The love of my life also turns 30,19 days ahead of me. We are planning a massive party to extraordinarilycelebrate all three of these birthdays and all that we’ve overcome in this pastyear. Bouncy house?

I have so much to live for! As my therapist told me toremember at our session yesterday: I am here. I am breathing. I am participating. I am still in the game with more records to break. What an honor and a privilege to still be active, tolove, to be loved, to explore, and to contemplate, despite this disease. I’vemade it so far – 7 months and 15 days post allo transplant. I can’t dwell on the bad, I have to useit to propel me forward.

Anniversary rickshaw ride

Two pigs appeared in the yard at my Aunt and Uncle's on Thanksgiving after we gorged ourseelves - too funny. We are making pig faces, obviously.

Our nephew, Jake!

Our niece, Anna!

"Awkward Family Photo" pose Christmas Day with Craig, my sister, brother, and now future sister-in-law

Oh, Christmas Tree!

Sammy wanted to be right in on the present opening action, so she shared the recliner with me.

Then she got real overwhelmed from all the excitement and decided to rest her head for a nap on the gift pile.

Kucinskas family $5 grab bag exchange

Diamond Holiday Bash 2011 - We projected classic Christmas movies onto the dining room wall.

Diamond Holiday Bash 2011

Diamond Holiday Bash 2011 with the Frankster, co-hostess extraordinaire!

Sly Stallone (Rocky)'s footprints in the Walk of Fame - apparently he signed it on my first birthday!

Sunset Cliffs, San Diego, California

Torrey Pines State Reserve, San Diego, California with my childhood friend, Kara, and her husband, Andrew.

Hummer ride through Joshua Tree National Park, Palm Springs, California

Seals on the beach in La Jolla, California

Atop the San Jacinto Mountains after a ride up the rotating Aerial Tram. Went from 80 degrees at the base to a snowy 30 degrees at the top.

Torrey Pines State Reserve, San Diego, California

In LA with our friends Steve and Jen (the Dickberrys) - our West Coast counterparts in this Hodgkin journey.

Aggression release - Jack Bauer style. Definitely out-of-the-box for me and I admit, I loved every minute.

Morning juice ingredients

Hurt

2012-01-22T17:17:00.000-05:00

Years ago, I ran into another cancer patient over a clearance rack at a Marshall's store. She said to me that her chemo "hurt." At the time, being newly diagnosed and still feeling invincible, I didn't understand what she meant. I saw chemo as a necessary means to an end, something that all patients had to endure to get to a cure. I didn't think of it as hurting, only as healing.

But she was right. Chemo does hurt. It hurts very, very badly sometimes, like right now. It's four days after my latest infusion and I feel as if that bully child with the metal bat is back at me. He's hit me repeatedly across the back, in my jaw, and then jammed the bat down my throat causing swelling sores and rawness. Every tissue in these areas is swollen and emanating ache. I feel as if I'm swallowing over a bed of rocks.

The hurt can come out of nowhere – no warning, no sympathy, no prisoners. How is anyone supposed to deal with this balance of hurt vs. healing? Why should there have to be so much hurt in a situation already saturated with pain of all kinds. The need for further developments in cancer treatment is so dire. The side effects of the treatment should not be worse than those of the disease. It is counterintuitive and unfair. Our world is far too advanced for this dichotomy to still be a reality.

Vinblastine Treatment 4

2012-01-19T14:30:00.000-05:00

I'm feeling decent, though the Vinblastine single-agent chemotherapythat I'm on is pretty tough. The primary side effects have been fatigue, deeptissue aches, jaw pain and tightness, and neutropenia (very low white bloodcell count/immunity). The drug is given through a short syringe my nurseinjects into my port by push after my anti-nausea and steroid premeds are run.It’s incredible what affect such an innocent looking amount of medicine can do.I can’t let the dosage fool me; it packs a punch!

Scaling the wall

The Vinblastine has done a number on my white blood cellcount. The plan was to get weekly infusions, but my bone marrow has saidotherwise. To give it some credit, I have been very heavily treated and mymarrow is quite compromised. I’m proud to see that it has still been able toproduce blood cells at all – for this I am grateful. I’ve never been unable torise back to normal blood count levels with time or drug assistace.

To remain safe, my WBC count has to be at least 1,000 inorder to receive treatment. It hasn't been able to stabilize quickly enough toendure the original, aggressive weekly plan, so I've been more on an biweeklytreatment basis. My counts were too low to get treated last Wednesday (ANC 0.6),which is why I felt pretty good last week and this past weekend without thechemo effects. In fact, I felt good enough for a day of indoor rock climbingwith Craig. It was our first time and something we both loved. I especiallyloved the sweet reward of getting to the top and the mental challenge it tookto figure out how to get there. I had no problems beyond any normal climbingfatigue and a few battle bruises endured from banging my knees into the wall.It was an exhilarating, rewarding and gratifying experience. There will be moreof these types of adventures to come for me in 2012.

But back to treatment … . On the off-weeks, though I haven’tbeen getting infusions, I do receive Neupogen shots to stimulate my bone marrowand get me back into the safety zone. These are very tough on my body – somethingthat is new since transplant. It's been explained to me that the medicine maycause more pain now because my new immune system may be more sensitive to it. Thedays following these shots have been utterly debilitating! The bone pain ishorrendous – from the large bones of my hips and back to the smallest bones inmy head and jaw. Dr. Dailey and I are going to try to avoid the shots thisweek, rather than giving them to try to force the possibility of anothertreatment next week. The hope is that my counts will recover on their own witha week off and we’ll just be satisfied with that schedule. Unless I drop below0.5, I’ll escape the injection. Yesterday was my fourth Vinblastine infusion.One more is scheduled for two weeks from yesterday. Then we check in and seewhatsa happening.

A rash flare on my ankle/foot - GVHD?

The Graft vs Host Disease of my mouth continues, as do thesteroid rinses, which keep it at bay so that it's really not bothersome, juststrange and kinda gross. There has also been a new, exciting development – I'vebeen developing rashes and welts on my skin. A rush visit to my transplantdoctor last week revealed it's likely that this is a manifestation of GVHD aswell. He did a skin biopsy on which I am awaiting results to find out if it isan auto-immune attack process happening. If it is, then that means it is likelymy sister's immune system is also going after the lymphoma and hopefully givingme the desired Graft vs Lymphoma effect, which I went through the whole allo transplantprocess to achieve.

Next big marker is a PET/CT Scan on Feb. 10. If it islooking clear then we likely will do nothing - fantastic, fantastic and hopefulnews! I will come off my current chemo and we'll let my donor immune systemcontinue to do its work. My doctors and I hope that we've been working thebrakes and the gas correctly by balancing immune suppressing/lymphomaeradicating chemotherapy with increased action of my new immune system. Thewhole idea is to stay ahead of the lymphoma so that my new immune system hasthe chance to be able to catch up with and go after it.

If there is some disease reduction, but still some lymphomapresent, then we may go forward with the Donor Lymphocyte Infusion of some moreof my sister's cells. However, we'll have to weigh what the status of my GVHDis at that time as more of her lymphocytes might push me too far into thedanger zone of severe or fatal Graft vs Host Disease manifestation.

Severe flare with welts on my hip flexor/stomach area

We are trying to avoid systematic steroid therapy and all ofthe side effects and long-term damage that can cause, and instead going for moretargeted steroid therapy. In addition to the Dexamethasone mouth rinses, I nowuse a topical steroid cream for when rashes and hives enflame anywhere on mybody, which has been happening about once a day now. These are totallymanageable and treatable side effects, effects I am grateful to live with,especially knowing these they are likely a sign that I am moving closer to acure.

Life outside of treatment has been pretty wonderful lately. Ithink that the dark cloud I was in has moved past. Cancer is really only asmall piece of my life right now. I have so much more to write about and lookforward to telling stories of my adventures outside of all of this – moreentertaining writing to come this week! It can be difficult to rehash therealities, fears and goings on of my current therapies and cancer patientstatus. This is why much time has lapsed between posts lately. I often want todo anything but talk or write about what I’m going through. But, then I realizethe importance of doing so in order to keep a log for myself, for those thatlove me and worry about me, and for all those other patients out there tryingto navigate this crazy cancer world. This is bigger than myself and my ownavoidance and laziness. So like it or not, I’ll keep the boring treatmentupdate blogs coming – interspersed with some more fun and (hopefully)insightful posts as well.

Vinblastine Through the Holidays

2012-01-04T16:51:00.000-05:00

Angry Karin on first day back in chemo chair.

I did start the Prednisone the day after my PET Scan andovernight NYC visit. I didn’t get much effect from the 50mg of steroid. Thegoal was to reduce the inflammation in my body, but I didn’t feel much ofanything except a harsh blow when I came off of it. I did however get an effectfrom the next treatment step. That Friday, December 16, I had my first infusionof a traditional chemotherapy of my treatment past – Vinblastine. I hadreceived it as part of my frontline ABVD treatment – the very standard frontlinetreatment against Hodgkin Lymphoma.

The idea of a variation of the R-CHOP chemotherapy regimen had been beingtossed around for a while by my transplant doc, lymphoma doc, and the lymphomaboard at Sloan. It was what was suggested as an alternative to the Revlimid butone that would be a sledgehammer at me. My doctors and I were hesitant to useit as it would be a very toxic blow to me and we are all on the same page thatmy biggest concern is quality of life. I do not want any more toxicity than Ineed and I want to be able to enjoy and live my life as much as possible.

We decided to start with a single agent from that regimen,Vinblastine, in order to see if just that one drug would do the trick to meltthe current disease activity. Taking just this one drug would also allow me totravel to California with Craig – What? I know! (More on that glorious trip in the next blog – it wasn’t just artisticallusion in those Counting Crow lyrics, we really did go.) My Sloan doctorswere more than supportive of us taking this vacation and wanted to doeverything possible to ensure that I’d be able to enjoy it.

I received two doses of Vinblastine, one each Friday beforewe left on our trip the morning after Christmas. I got to skip a week while wewere in Cali. The upside to taking a more traditional chemotherapy drug is thatI can receive it close to home. I’ve gotten the IV injection right close by,back in the familiar haunt of Hartford Hospital’s cancer center. I’m back underthe care of my beloved Dr. Dailey who is working beautifully in tandem withDrs. Moskowitz and Sauter at Sloan-Kettering. I truly have the dream team ofdoctors. They are kind, wicked smart, understanding, accommodating, thoughtful,and 100 percent in sync with who I am, what my health goals are, and what isimportant to me.

It’s difficult being back at the treatment center where Istarted with all of the nurses, lab technicians and secretaries that have seenme from the beginning. It’s as painful for them as it is for me to see me backin the chemo recliner. But at the same time, it’s comforting. They all know mylong treatment story, my family, and so much about my life. There is a highlevel of familiarity there and it takes away the fear of the unknown andunfamiliar. In that regard, I feel fortunate to have forged such closerelationships with the team there. We laugh a lot together and I get a lot ofhugs and ushered into special rooms on the fast track – the privileges of beinga longstanding “client.”

At the first treatment, I was pretty angry and tired. Ididn’t want to be there. Craig and I were hosting our big annual holiday bashthe following day where nearly 60 people would be at our house and I was muchmore focused on the fun of that, not this chemo crap, and the unknowns of how itwould affect me. But I did it – with the escorting of my mom to make sure thatI did it. The infusion is a push IV infusion so the drug administration itselftakes about two minutes. I receive Alloxi anti-nausea and Decadron steroidbeforehand then a bag of fluid after the IV push. In all, the whole processtakes about 90 minutes, including doctor visit. It’s doable, though certainlynot as convenient as swallowing a pill at home.

The biggest side effect was constipation – oh, very badconstipation. I was blocked up all through Christmas. This is caused in somepart by the drug and a big part by the nausea blocker, as it doesn’t just blockone exit, but both. Trying to get things moving was not fun. I felt the normalwooziness the day of the infusion, but was pretty good after that.

The biggest reward is that the pain is ceasing. After justtwo infusions of Vinblastine, I haven’t felt any pain in my hips and my backpain is highly reduced. A few days after the second infusion (the day beforeChristmas Eve) I didn’t have to take any more pain pills. This was fantastic asneither the treatment nor the Hodgkin symptoms held me back through all of ourholiday events nor our vacation. I was very tired and again, very constipated,through the holidays but things really eased up for me that last week ofDecember.

I went to Sloan-Kettering yesterday and Dr. Moskowitz wasthrilled that my pain was reduced and saw this as a good sign that theVinblastine is working. She told me that she could cry she was so happy. Wedecided not to add in the other drugs of the R-CHOP or CHLVPP regimens that wehad discussed and stuck with what seems to be working with as minimal toxicityas possible. She is fully behind this plan knowing that it allows me to keep myactive lifestyle and it was wonderful to rejoice in that with her. It’s not tosay that I feel like a million bucks – far from that. But when you’re in aposition like mine, the “feeling good” scale is pretty skewed. For me, this isfantastic compared to what early December was.

Happier Karin Week 2 - maybe because carolers
came around to sing for the patients at the cancer center.

Another big development is I have mild Graft vs. HostDisease of the mouth. It is likely a chronic condition, something that developsin 60 percent of allo transplant patients. This is wildly uncomfortable attimes, but so thrilling! I can’t believe I’m rejoicing about it, but when Ilearned yesterday that the weird growths in my mouth are GVHD I wanted to do ahappy dance. Dr. Moskowitz sent me over to Dr. Sauter’s clinic, where he camedown from the hospital making special accommodations to see me because he wasso eager to look in my mouth. All three of us were pretty psyched that becauseif my sister’s immune system is going after the cells of my inner cheeks andlips, it means they may also be going after the lymphoma. We’ve got some immunotherapyaction happening!

My mouth had been very dry, tingly and tight for weeks. Thenight of my first infusion of Vinblastine, big raised white bumps rose on theinside of my upper lip and along the inside of my cheeks at my gumline. Therewere lines of white raised trails all along my cheeks that were scraping upagainst my teeth and gums. The first two nights were pretty painful and Icouldn’t eat or drink much without enflaming it.

At that point, we weren’t sure what was going on. It didn’tmake sense that the sores were from the Vinblastine. Customarily, it takes atleast a week after chemo for it to drop blood counts enough to cause mouthsores. And these mouth sores weren’t open and seething like ones in the past.They were more actual raised growths in my mouth, kind of like under-the-skinpimples on the inside. It felt like there wasn’t enough room in my mouth for mycheek tissues as the skin was so taunt and overgrown. The growths remained fora week though reduced in severity with each day. Prescription “MiracleMouthwash” helped to numb and soothe the areas as it’s basically like swishingNovocain around your mouth.

Before my second infusion, Dr. Dailey took a look at themouth growths and found the whole thing so curious. By phone, my Sloan doctorsdid as well. There were murmurs that this could be GVHD. Of course, I had donemy research as well and was convinced by the photos I found online on medicalsites that this was in fact what I had.

After the second chemo infusion, the mouth irritation is allbut gone. My cheek tissues are scarred and swollen and my mouth is stillincredibly dry, but by day 2 in California it was no longer bothersome anddidn’t affect my eating or drinking at all. This further solidifies that it isGVHD of the mouth mucus membranes – a common manifestation.

Dr. Sauter explained that the sores were going to comewhenever they came. It was likely just coincidence that they flared the day Istarted the Vinblastine, but that the chemo is actually what is making my mouthbetter. In his words, the chemo is like “taking a bazooka to my immune system”and is stopping my sister’s cells from attacking my mouth because it issuppressing it. Aha! Makes perfect sense. The hope is that the chemo is workingin tandem with my sister’s immune system to go after the lymphoma. He stilllikes the idea of doing a Donor Lymphocyte Infusion with more of my sister’scells after a few more hits of the Vinblastine to really get the lymphoma undercontrol. I’m considering this option and will see where my body and head are atin February after four more doses of this.

To help control the mouth irritation, I have now started asteroid mouth rinse. I have to swish it around my mouth for five minutes twicea day. It brings targeted steroid therapy right to those mouth mucus membraneswhere the auto-immune action is happening and will reduce the inflammationthere. If all I have to deal with regarding GVHD is doing a mouth rinse for therest of my life, I’ll take it.

I’m at the Avon Cancer Center right now getting my thirdinfusion of Vinblastine. Hopefully it continues to do the trick. I’m currentlyneutropenic again so I received a shot of bone marrow-stimulating Neupogenyesterday at Sloan. Seems that it worked: my neutrophils are up to 3,000 and mybones have the aches to prove that progress. Bring on the poison; continue the healing.

Painful Signals

2012-01-03T21:16:00.001-05:00

“You are extremely anemic,” Dr. Moskowitz said as she pulledup my bloodwork results on her computer. She looked at me with great concernand it seemed that all the symptoms I had been describing since the beginningof our Dec. 13 appointment came together and made sense.

My pain had gotten to be extreme, waking me up writhing inthe morning, preventing me from sleeping, or worse, the gravity of it waking meup in the middle of the night. It would throb and seethe mostly in my right hip– a pain that emanated from deep in my bones yet would spasm through my pelvisand upper leg. It brought me to tears and it forced me to take some of the painmedication from the bottle I had from my transplant procedure. I called myparents the night before this regular check-up at Sloan-Kettering. Iknew that I wouldn’t be able to handle the train and I needed a ride in. Myparents were happy to oblige – my father’s first time driving into Manhattan –and I was able to stretch across the back seat with a blanket and pillowalleviating the pressure on my painful sitting bones.

My mom and I went into the appointment and the doctor askedher customary, “How are you feeling?”

“Um, okay,” was all I came back with, knowing that my eyessaid it all.

“Oh no,” Dr. Moskowitz said in her sweet voice. “What’s thematter?”

Tears started to well and I hardly had the strength to holdthem back. I told her how exhausted I’d been, how I had had some kind of upperrespiratory infection, which really knocked me down, how I’ve felt some lymphnodes, how I’ve been having the worst pain of my life.

I couldn’t even finish the list. My mom stepped in and toldher that things have been very difficult lately, that I lost my mother-in-law,and that I was very tired, angry, and frustrated.

Dr. M listened quietly in her thoughtful way and though shekept professional, I could see that she was breaking inside too. She’s young, nomore than a few years older than I am, and because of that, we have a specialbond with each other: two young women facing this Hodgkin’s puzzle together.

She told me that my low RBC count would require two units ofred blood cells. My numbers were so low that the transfusion couldn’t even begiven in the regular day hospital. I would have to go to Sloan-Kettering’s UrgentCare Center … and would I want an ambulance ride there? She even laughedherself at that request knowing how I always walk, always, and how she teasesme that I do more hiking and yoga than she does. I’ll ask her about my exerciseregime and she’ll say, “Should I be doing that?”

After a continued exam she was concerned about how gaunt andtired I looked. She felt some little lymph nodes in my neck and underarm butsaid that they were nothing remarkable, and likely could be reactionary, likeanyone’s. But I could tell she was concerned. And she was not going to let thispain go unchecked. She worked to get me an emergency PET Scan the followingmorning. The plan was to send me to Urgent Care, wait for the units of bloodthen admit me as an inpatient so that the doctors could explore what wascausing such a loss in red blood cells. For my count to halve in just a weekwas not acceptable and was cause for great concern.

I was so comforted to have my parents with me because theadded concern of anemia on top of the worries I had come into the appointment withled to sheer exhaustion. Had I been by myself I may have just crawled into aball and curled myself in the corner. They helped me get from building tobuilding and into that dreaded Urgent Care center where the sickest of the sickcancer patients hang out.

I didn’t understand it. I knew I wasn’t feeling well, but Ihadn’t felt as dizzy or debilitatingly fatigued as my numbers were showing.Just the day before, I had hiked a mile uphill with Sam Dog to our lookout. TheUrgent Care nurses drew a type and screen match for the blood and we knew itwould be hours before the blood bags came back from the bank. Then, each bagwould have to run over the course of two hours. We were in for the long haul: Ion a metal stretcher with a mattress worthy of an ironing board pad and myparents jammed into uncomfortable chairs in our little curtained cubby withextreme patient scenarios all around us.

The Urgent Care doctor came in spouting concerns about whatmy low blood counts could mean and told me that they would have to admit me andhold me until they could figure out what was going on: an internal bleed ofsome sort? This was terrifying. He told me that they secured the first PET Scanof the morning to check into the pain that brought me there in the first place.Equally terrifying – but assuring to know that we were looking into what I alreadyknew was going on. The Revlimid wasn’t working. To me it was so obvious that mybody was having a Hodgkin Disease flare. It’s a very distinct feeling. There isa certain chills-like tingling that I feel throughout my body and my fatiguebecomes a heavy blanket wrapped far too tightly. It slows everything from mycognitive function to my walking stride.

I would have to be admitted into the hospital. They wereworking on securing me a room. As much as I persisted otherwise and promisedthat I’d stay in the city, that I’d come back first thing in the morning to getmy PET Scan, the doctor was not having it. Can’tI just get the units of blood and leave? Why do I have to stay overnight justto get a scan? Please, let me go. I didn’t have a chance. They couldn’tleave me unmonitored with such anemia. They needed to find the cause of theblood loss. The idea of a night in the hospital was mortifying.

I changed into the requisite hospital Johnny and curled upwith the paper-thin pulpy blanket they provided. Those Johnny gowns couldn’t bethinner if they tried and they always hang at the perfect length for the chestpocket opening to be right at nipple level leaving my booby the chance tounknowingly peek out. The “sleeves” never button up right and the back tieseither slip apart at the most inopportune times or knot up so tightly that ittakes some patient Girl Scout ingenuity to get out of the thing.

I endured more needles and blood draws and begrudginglyrolled over for a rectal exam, the lubed and gloved fingers of a strangerentering me and searching my bowels for a sample of stool or evidence of anintestinal tear. I had no strength and the feeling of defeat that once again Iwas to be poked and prodded like an animal was disheartening. I locked eyeswith my mother with a look of pain and longing to be anywhere but there.

More time passed and my mom persisted with the nurse that myComplete Blood Count (CBC) needed to be rerun. That had been Dr. Moskowtiz’srequest as well and we all assumed that it had been done. But when questioned,for some reason this had never been ordered. After some push, the doctor andnurse in charge of my care agreed to ask the lab to recount my blood levels. Wewere still waiting for the bags of blood from the bank anyway. I also stillcouldn’t eat in case by chance they had to do a test that required fasting. Itwas the evening by this point.

A few minutes later, we heard the ER doc on the phone at thecommand station saying: “I can’t believe it. I’ve never seen this before.” Hepushed back the curtain to the cubby where my parents and I camped and told usthat my red blood cell count was 9–far from the 5 that had registered earlierthat morning. I was still slightly anemic, but that was normal for me. In fact,I was nowhere in the danger zone. The ER doc, with his heavy Russian accent,told me that Dr. Moskowtiz was on the phone and wanted to speak with me. Ishimmied to the central nursing station in my non-slip socks with my fleecezipped over my risqué hospital gown and leaned over the counter to grab thephone and chat with her.

She was shocked and so apologetic that it took them so longto identify this issue. She was under the impression that they had verified thenumbers hours earlier. She explained how rare it is to have just one number beout of whack – how if a sample is faulty, usually all the blood counts areunmistakably incorrect. At this point, all I was concerned with was gettingoutta there. She confirmed that yes, I wouldn’t have to stay overnight in thehospital, but that I would need to return in the morning for a PET Scan. Even thoughmy blood cell levels were decent, I was still having Hodgkin symptoms and a lotof pain.

My parents and I were able to secure at room at one of ourold stomping grounds, the Miracle House, and we spent the overnight in thecity, unplanned. The organization and the accommodations they provide trulylive up to the “Miracle” name. My parents were troopers. We visited CVS foressentials and a diner for a late dinner of French toast and hydromorphone forme. I slept no more than two hours. I was up all night tossing and turning withpain and worry. Half a book and episodes of Conanand Seinfeld couldn’t make it goaway.

We were up and in a cab crossing through Central Park fromHell’s Kitchen to the Upper East Side by 7:30am. Fingers were crossed that myPET Scan appointment was kept for me even though I wasn’t an inpatient as itwas initially booked. There were no problems. It wasn’t until I was in thatscanning tunnel, arms overhead and rolls of towels tucked alongside my head sothat I wouldn’t move that then I fell asleep. I was overwhelmed, exhausted butcomforted by the heated blanket they draped over me before starting the test.It’s a sad testament that the whir of a PET Scan taking 3D pictures of my body wasthis adventure’s magic sleep trigger.

I got a call from Dr. Moskowitz that evening. I listened andtook notes on a scrap envelope at our kitchen island. Craig stood by readingover my shoulder. I wrote:

Lymphoma is growing.

Obvious Revlimid not working as we hoped it would.

Areas on right hip,sacrum, and vertebrate lighting up more significantly.

New hot spots in pelvis,left hip and abdomen.

This is cause of pain.

It is in my bones andon my bones.

Don’t start 2^ndcycle of Revlimid pills.

Stronger chemo neededto melt disease.

It won’t cure me, butwill get things under control - will make me more comfortable.

Start prednisonesteroid immediately.

I knew. I could feel every bit of it increasing in anger,flaring against me. I knew that the war inside was getting heated.

[ “It’s been a long December and there’s reason to believethat maybe this year will be better than the last. … The smell of hospitals in winter and the feeling that it's all a lot of oysters, but no pearls. If you think that you mightcome to California, I think you should.” – Counting Crows ]

So we did.

A Merry Christmas Story

2011-12-25T12:58:00.000-05:00

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 karinmdiamond@gmail.com.

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.

Not As Easy As It Looks

2011-12-11T20:40:00.001-05:00

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.

My husband's mother, Linda, passed away on November 29. Craig and his brother, Eric, were with her by her side. Letting go and watching her slip away over the course of a couple of weeks was heartbreaking, as was deeply feeling how it affected Craig, Eric, Rachel, me, and the rest of her close family. I hate that I am not at my own full capacity to be able to pick all the rest of us up. I hated that I felt I was not the wife I would have been three years ago. I spoke at her service and spoke much with her in her final days and am inspired with how at peace she seemed to have been with her life and the choices that she made in it.

It is also the first Christmas without my grandmother. There is certainly a void there and because I was so sick myself when she died, I have had no closure and no comprehension that she is gone except in the eyes of my mother and uncles. I'm almost emotionally numb to it.

My dear friend also just lost her mother to another cancer battle and I feel like more and more people are getting diagnosed. I'm also deeply affected by the loss of a fellow warrior, a woman who came to visit me when I was in transplant quarantine and who helped to decorate my room with photographs and art. She never made it through transplant and is now gone and the sadness of that is immense. It's terrible and awful and I wish that there was something that I could do to make it all go away.

I had been working out and getting back into yoga, but I've been so tired and so achey that I haven't been able to over the past two weeks. Eating is a continued struggle. I'm afraid that everything I eat will give me more cancer. I'm rarely hungry and my meals have been scattered and unbalanced. My mouth is always dry and my tongue aches and tingles all the time making it difficult to eat and sometimes even to drink.

The MFA in writing graduate program has again had to be deferred, if not completely unattainable now. My life is just too variable. It's too much money and it's too much of a commitment at this point and I don't know that it makes sense to make that investment. I also never did get out to Nevada to see my sister, the mountains, desert, and Vegas strip. The trip had to be canceled so that I could say goodbye to my mother-in-law at her memorial service.

I did move forward with my return to work full time, though primarily from home and with different job responsibilities. It's taking adjustment and a reassessment of myself and my capabilities. It's been difficult to have the faith in myself that all of my team members have in me. I'm doing my best to push through this transition period as I get past the uncomfortableness and into the realization that I'll never be the same as I was before all of this. Everything has been compromised.

I no longer have the capacity nor the energy to keep up a front or to brush things off. I am irritable and irrational most all of the time. No one can say the right thing to me and I'm building my own walls and breaking them down over and over again. This has manifested itself in my relationships with those closest to me: my husband and my parents and most troublingly, myself. No one beyond that would probably even know how much I am struggling – or maybe they do and I just don't know it. I'm only just starting to share these feelings.

My donor transplant was wildly traumatic. I've written about this before, but again, I am only seeing now how painful and scary it was because I didn't let myself get taken down by it at that time. I was in survival mode and it was exactly what I needed at that time and how I got out to the other side. Now that I am here, I have no idea what to do with myself.

I'm sorry to be so brutally honest for those who have yet to go through what I have, but transplant was an inhuman experience. I was literally vomiting on myself, shitting and pissing my pants multiple times a day. I'd get up, throw out my underwear, change it, and have no more energy left to do anything else. I spent my 29th birthday with a mouth full of blood from the severe sores in my cheeks and on my lips. But somehow what I remember fondly is smiling through it, with red stained teeth, at my dear friends who came to celebrate with me. I spent nights so weak that I had to use a commode next to my bed and sometimes I couldn't even make it to that. I woke myself up talking to clusters of balloons and would be so tired that I couldn't hold onto a cup of soup without falling asleep, losing my grip, and spilling it all over myself, too tired to even clean it up.

I came so close to death and to have risen from that – after constant treatment for two years before that – only to come back to find out that the f*&C^ing lymphoma is still growing is enough to knock me to the floor in sheer defeat. Being back in doctor's offices so much recently and having to recount with some semblance of cheeriness to my oncology teams of past that: "Yes, I had the transplant, but the journey continues ... ." or some bs line, is awful. I hate it. I wanted this to be over. I wanted to tie it in a bow and put it all away.

I'm not giving up. I just don't know what I am supposed to be doing. I don't know if I'm going to get better. I don't know how much time I have. These are tremendous unanswerable questions that I suppose we all try to answer. I just want to stop thinking about them all. the. time. I have lost a lot of my self confidence and my emotional stability has taken a big hit. I wish that it was more acceptable to be sad and scared and that there wasn't this tremendous pressure to keep myself so positive for everyone else. What I ask is for people to be real with me. Tell me it's difficult for you too. Tell me that this is normal, that it doesn't mean that I'm weak. Maybe then, I can be realistic with myself.

I have one cycle (21 days) of the Revlimid 5mg under my belt. As I mentioned, the fatigue is intense. However, my blood counts do not seem to have been affected at all. They are actually still soaring since my sister's donor cells gave me such an incredibly active new immune system. All of my counts are in normal range. My platelets are 280,000 – at stark contrast from this time last year when I had to do jumping jacks to get them up to 75,000 in order to receive treatment or the numbers as low as 16,000 this summer.

My liver function numbers are up: this could mean that maybe some Graft vs. Host/Graft vs. Lymphoma effect has been stimulated by the Revlimid. This is what we have been hoping for, sort of. My odd tongue feelings could be a part of that also. And, I've been having strange rashes, hives and welts that wax and wane out of nowhere. None of my doctors know exactly what all of this means but they are watching me very closely. There is so little data and so little precedent that it's all kind of a guess. I continue to see my transplant and lymphoma docs at Sloan every other week. I head back to NYC on Tuesday and we'll talk about starting up the second cycle of Revlimid. After that, a PET Scan to check progress.

I also am on the tail end of a rough cold virus which had me in hacking coughing fits for several days and blocked up my left ear completely. I just finished a course of antibiotics and feel improved but not fully recovered. I am so deeply hoping that it's not another "upper respiratory infection" that turns out to be the lymphoma on the rise – again.

I've also had some pretty incredible back, hip, and sacrum pain and aches. These aches are deep in my bones. I couldn't move without being brought to tears. It was so bad last night that I had to take pain medication, something that I have not done since I was an inpatient during transplant. Dr. Moskowitz ordered me an MRI of my entire spine last week and it didn't show that any tumor was pressing on nerves, which was assuring. It didn't reveal any vertebrae involvement that we didn't already know about. I am aware that much of these back issues may be related to tension. I hope?

I don't mean it to seem that things are awful all of the time. Christmas is my favorite time of year. We have a beautiful tree and have had many enjoyable moments, and I am doing my best to focus on those. I am so appreciative of my beautiful family and friends. My sister comes home for the holidays next week and Craig and I host our annual holiday bash on Saturday, which will bring so many of our favorite people into our home. I feel so much love, especially at this time of year. Maybe that's why this year, at this time, it's been so very hard for me because I want there to be many more to come. I miss my health terribly and it is the only gift I want this year.

Grateful for This Life

2011-11-24T10:33:00.001-05:00

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.

Biopsy #4 and Revlimid Start

2011-11-20T21:56:00.001-05:00

It's been a while and much has happened. I had the biopsy procedure ofmy right sacrum performed at Sloan-Kettering. The pathologists have read thesample and confirmed that yes, there are the telltale HodgkinLymphoma Reed Sternberg cells present. It's the same disease trying toflare 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 ofthe disease we're trying to go after.

The biopsy procedure was not fun, this is certain, but it’s over, and Iwas 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 beforethe 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. Thesurgeon went in with a needle and bone hammer and extracted a piece of the boneand marrow where disease looked to be involved, pinpointing the area with liveCT Scan technology. The surgical team gave me medication to relax me, but I wasby no means asleep. I played Bob Marley through my headphones and welcomed theanesthesia 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 moretraveling 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 andtalking out options with my family and medical team, but mostly with myself. Ihad to ask the really difficult questions to my doctors to be able to getthings into perspective here. They’ve been realistic and gracious and I couldnot 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 CTLottery tagline: “You can’t win if you don’t play” keeps coming to mind. Sodoes 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 inorder to do so. Playing will not be easy and the idea of more treatment isdeflating, but it beats the alternative. To be very blunt, if I don’t play, Iwill 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 willkill me. I’ve decided to hedge my bets. Because there are areas of cancer on myvertebrate, 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 currentoptions, 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 haveexhausted most of those options anyway having been so heavily treated. I do notwant to send my body into tremendous trauma again, and because of constant scientificdevelopments I hopefully will not have to.

Gratefully, there is a promising option and I have decided to embraceit. 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 refractoryHodgkin Lymphoma – even after donor transplant. It has shown some promise inthese studies, and I’ve connected with a couple of other refractory HD patientswho have had great disease reduction results with it. The best part is thatbecause it is a targeted therapy, the side effects are said to be minimal. Sofar, this has been true. I’m a little more tired and more easily winded, butthat seems to be all.

The drugs were delivered via FedEx to my door. It is an oral pill that Ihave been taking once a day and will continue to for the 21 day cycle, one weekoff, then a second cycle. After two cycles we will check a PET Scan to see theprogress 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 actuallypushed them into some mild Graft vs. Host Disease proving that the drug mayactually have a stimulating affect on the immune system/donor lymphocytes. Thispossibility makes the therapy even more ideal because not only will it be goingafter the small amount of lymphoma I currently have, but it may also ramp up mynewly donated disease fighting cells: a win-win.

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

Life has been very emotional in many respects – tough moments but alsobeautiful 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 hashappened during that time. The freedom and confidence that allowed has donewonders for my spirit. My limitations will increase some again once this new drugbegins to affect my blood counts, but it shouldn’t be anything extreme. I’llcontinue to see my lymphoma doctor at Sloan-Kettering once every other week andwill have blood work drawn locally at Hartford Hospital’s nearby cancer centerevery week.

Yes, treatment continues, but my life does too. Living is my focus nowmore than ever. No more being a full-time, incapacitated patient. I am taking full advantage of my renewed strength and mental capacity. I am stillgoing back to work full-time from home as planned. I start tomorrow and I can’twait 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 inLas Vegas for a few days and very much look forward to seeing the desert andmountain 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?

Scan Storm

2011-11-07T20:16:00.000-05:00

Two days after getting my less-than-desirable PET Scanreport, we lost power at our home in Connecticut, along with just abouteveryone in our state. We had no heat, hot water, lights, internet,cable, or electricity. We remained out of power for 7 days. There are still45,000 customers out of electricity here in Connecticut and I feel greatly forthem: the scenario can be quite frustrating. The timing of it all wasimpeccable because for Craig and me, it actually provided a very welcome distractionfrom the realities of the news that I got.

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

Lights out pizza party

After a long day of doctor meetings at Sloan-Kettering onFriday, Craig and I came home to the beckoning beam of our driveway floodlightand the sound of our neighbor in our basement rewiring the electricity from ourgenerator to our main switchboard. We came in to the heat pumping from ourpellet stove and the house whirring with that buzz we all take for granted. Itwas glorious to be able to sleep upstairs in our bed for the first time in aweek, rather than bundled on a couch or air mattress.

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

He walked into the room and said: "How's your backfeeling?" 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 weresome hot spots on vertebrate on my spine, two new lymph nodes lighting up in myright chest, and that the spot on my right hip/sacrum had grown more prominentsince my last scan. In short, it looks like the lymphoma is on the rise againdespite my new immune system.

The good news is that more tests confirmed that I received aperfect graft from my sister and now have a fully functioning immune systemagain. I am completely off of immuno suppressant drugs. Her cells are within methriving and doing wonders for me, as evidenced by how well my foot has healed– I am walking and hiking and working out on it. However, the graft between us wasso perfect that her cells are in there living lovingly and comfortably. This iswhy I have not had any Graft vs. Host Disease symptoms: my sister’s cells andmy own body have synced together seamlessly – everything that we hoped for, ararity of beauty. Unfortunately, that also means that my body has not gottenthe desired Graft vs. Lymphoma effect.

The words swirled as Dr. Sauter pulled up my scan and welooked through it together, taking a 3D tour from my brain to my pelvis. I wasdoing my best to hold it together until he reached out and gave me a hug and Ilost it.

I looked at him and said: “But I was supposed to go back towork on Monday. What am I supposed to do?” It was the first time that I havecried in a doctor’s office. He gave me tissues and we took some comfortingbreaths together. I think it was as hard for him to deliver the news as it wasfor me to take it. Understandably, we’ve grown close over all of this and hewants nothing but the best for me. He had been so hopeful along with me, butadmitted that he was more worried every time he saw me and saw how well I wasdoing. Ironically, from the allotransplant standpoint that wasn’t really a great sign and we both knew it. Froma quality of life standpoint, it’s been fantastic.

So, forward we move. Craig and I went back to Sloan thispast Friday to further discuss options and realities with Dr. Sauter and alsowith Dr. Moskowitz, my lymphoma specialist there. Between their two incrediblebrains, we will find the best next step. They each spent so much time with usgoing over the science of it all and the goals, possibilities, and statistics.I am incredibly fortunate to have such kind, compassionate and smart, smartdoctors in my corner. I am now again held in the care of both of them and mycase is being brought up to the lymphoma and transplant teams to pick thebrains of all the Sloan-Kettering oncologists in those specialties.

The whole situation is confusing and disappointing. I’m verysad and have not yet decided what path to take at this huge fork. More researchand contemplation is needed. I want to make the best decision for mysurvivorship. The first step in that research will be a surgical biopsytomorrow at Sloan. They will be performing a CT-Scan guided biopsy to extract apiece of the bone in my right sacrum to be analyzed by the pathologists. Mydoctors and I want to confirm the enemy that we’re working against here.Clinically, it is presenting like it is Hodgkin Lymphoma again, but there isthe chance that the cancer could have morphed into Non-Hodgkin Lymphoma … orsomething else. It has been more than a year since my last biopsy and I’ve hadmuch treatment and donor transplant since then so it makes sense to check.

Pending the results of tomorrow’s biopsy, the vague proposedplan is to endure a few cycles of another treatment drug that I have not yettried – hopefully a targeted therapy that will leave me with minimal sideeffects. There are still a few drugs that I haven’t tried and new ones are onthe horizon all the time. Once it’s determined that I’m in a more sufficientremission from the disease, we can try what’s called a Donor LymphocyteInfusion (DLI). This will be a super booster injection of more of my sister’slymphocytes (a type of white blood cell that fights disease).

The DLI process would be as easy as getting a bloodtransfusion, as my blood is now her blood. However, my body will always be mybody and therefore foreign to her cells. The purpose of this DLI will be topush my immunity balance over the threshold and essentially force my sister’scells to go after the lymphoma. Unfortunately, my body will be the collateral damageas we essentially force Graft vs. Host Disease on me with the intention ofkeeping it mild enough to be treatable, but aggressive enough to ramp up theallo transplant effect. For the most part, the undesired Graft vs. Host Diseaseand the desirable Graft vs. Lymphomia effect run in parallel. There is risk,but also promise, to the procedure.

In the words of Dr. Sauter, I’m a great patient, but I justhave a very bad disease. Fortunately, there is nothing that is of immediatedanger to me and that means there is time to consider my options, or even waitto make a move if I choose to do that. I feel good, considering, and I’m veryresistant to not feeling well again.

UConn Huskies

I have been enjoying many wonderful moments amid the tearsthat are hard to stop from falling. Highlights include dressing up as one of myfavorite literary characters Lisbeth Salander to pair with my husband as HomeImprovement’s “Wilson,” hiking to our mountain ridge lookout, taking in a UConnfootball game and getting to play with my niece and nephew.

A perfect setting to all of this chaos, most of the trees inour yard are snapped, scarred, and splintered from the snowstorm. Like them, Ifeel broken but still hopeful that I too will heal with time. Right now nothingreally makes sense: 18 inches of snow in October? Golden fall leaves coated inwhite flakes? Halloween canceled? The cancer is back? Talk about a warpedreality.

"The Girl with the Dragon Tattoo"

Hidey Ho, Neighbor!

Tailgate

Tough News, Good Thoughts

2011-10-28T11:07:00.000-04:00

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.

Let's Do This Thang

2011-10-26T15:55:00.000-04:00

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.

I've been spending a lot more time doing everyday regular person things with very special people in my life. That has made a world of difference to my psyche. I'm not allowing myself to be a recluse anymore. I already did that to the extreme – not by choice – this entire summer. This month I'm going to work on pushing myself to be uncomfortable because I've realized that once I get past that initial paranoia barrier, there are so many positive moments to be had, and that I deserve. I'm starting to hit the tipping point. I need to grasp the concept that I can be a little more reckless, more easygoing, more challenged in exciting ways. I guess what I'm saying is that I'm again trusting myself to take the reigns of my life and gallop wildly into its next beautiful adventures.

What I do struggle with is trying to look back and process all that I've gone through. I was so busy pushing forward and focused on finding health among nonstop treatment that I didn't spend much time thinking about what was happening to me. What I did was make the best of my situation every day. I didn't have the time, mental, emotional or physical capacity to be able to comprehend how dire my situation was at moments. All of this time I never felt sorry nor grieved for myself. Now that I'm peeking out the other side, I can't believe where I've been and what I've overcome. And not just me, but everyone whose life I am a part of.

This reality gets more and more haunting and difficult with each day. Until I've started to feel better I had no idea how really sick I was while taking all of those treatment drugs. At those times I just adapted and pushed through. Now I'm so proud of myself for being capable of doing that, but so sad to think that I had to and so sad to think of what others watched me endure, yet somehow remained steadfast in keeping me going despite how it affected them.

However, looking forward is getting to be less intimidating and more thrilling with a capital "T". I am incredibly grateful for that and deeply hope that tomorrow's scan and appointments will bring me even more confidence and more freedom to live my life with.

One of my friends and biggest inspirations, Matt, who is also recovering from an allo stem cell transplant told me to:

"Keep a good thought."

I'm holding tightly onto it.

Worried Sick

2011-10-20T16:57:00.000-04:00

I feel as if I’ve squandered away the past week. Icompletely bowed down to the tremendous anxiety and stress that today’s looming PETScan was causing me. And after all of that fretting, my oncologist and I decidedto 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 riska false positive reading on my scan results.

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

Conclusion A: I’d never recover from the virus I’d contracted andit 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 withthe rest of me. A piece of bone must have dislodged and was floating through meready to nest in my brain and cause me to hemorrhage (so obvious)

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

I could do nothing but pace around the house like an angrytroll. I think I may have worn down the floorboards with all of my aimlesswandering. I slept more than half the day away counting the hours until Craigcame home. I was weepy at everything. I did a lot of “tinkering”: starting projects,moving things around, but ultimately not able to follow through with even thesmallest of tasks. I was so tired and so flushed. The idea of even emptying thedishwasher was enough to send me into a tizzy. It is a very good thing that Ihave a patient, aware, and experienced husband and dog that kept me going.

Overall, I was very sad. I felt so good the week prior andhad been so positive about the encouraging strides I was taking that I couldnot handle the setback. I could not handle the anxiety and the anticipation ofwhat today’s scan would reveal, nor the anxiety surrounding why I wasn’tfeeling well. I’d wake Craig up in the middle of the night crying and tellinghim how kind he was and how much he means to me.

But you know what? I’m not dying right now. I had a coldwith a sore throat. A cold. It’s now five days after the symptoms started andmy throat doesn’t hurt a bit, my energy level is on the rise, and I’m walkingon my foot without any type of cast with only a little swelling, no pain. I nolonger feel fevery and my tight chest has opened up again.

Now I’ve learned that even transplant patients get a commoncold – and an even more important lesson, we can recover from it with rest andfluids and a little anti-viral Tamiflu prescription just like a regular person.Could this mean that I’m a regular person? I’m so used to hearing incrediblygrave news that it’s strange to me to think that being sick could be just that,being sick. Not that the cancer is back. Not that I’m dying.

Since transplant, my confidence has taken a big shot. I getvery afraid of a lot of things, an emotion that I am not accustomed to. I’vealways been pretty fearless and even going through much of my initial cancertreatment, I spat in its face. But now, the fear of recurrence is not as easyof a beast to tame. It roars and spits right back at me. If the cancer relapsesnow, I don’t have many viable options. In the past I always had the autologoustransplant in my back pocket. Then I knew that if that failed, I still had theallogeneic transplant card to pull. Now, I’m just dangling on hope that this isforever successful.

I get a stomach cramp from eating too much cheese and Iimmediately think it’s Graft vs. Host Disease attacking my intestines cell bycell. I cough and I think the lymphoma is gripping my sternum again. I have a gas bubble in my chest andthink that my heart is giving out. Obviously, I tend to jump to extremes. But Ican’t blame myself, I’ve been living in nothing but extreme conditions for thepast two years. I’m not used to these common ailments.

Like Dr. Sauter, I need good data. I need some reassurance thatthings are looking clean and bright inside. Neither one of us wanted to chancesome residual chest cold inflammation showing up that could contaminate myresults. PET Scans are finicky enough without the complications of a viralinfection. So, I will wait another week. Yes, that means another week ofanxiety, but that is far less threatening than mulling over a suspicious hotspot that’s nothing more than my lymphatic system doing what it’s supposed todo: attack viruses.

The scan delay actually alleviates a huge weight. I’m theone who called the clinic yesterday and questioned whether it was wise to getscanned today. My desire to have an accurate scan outweighed my desire to getit over with. I knew Dr. Sauter would agree with my concern. I even got out oftraveling to Sloan-Kettering for a visit. Instead, I only had to get bloodworklocally today. My counts look fantastic and all blood types continue to soarinto normal range.

I decided when I woke up this morning that I will not letthe worry overtake me anymore. Five wasted days is too many days. And maybethey weren’t wasted, maybe I needed that rest and that zombie period to get towhere I am today. I suppose bad days are important too; it helps me to realizehow good my good days are becoming.

On Halloween I’ll be back to work full-time from home andwill be gearing up to start graduate school to pursue my MFA in CreativeNonfiction Writing. These pursuits will no doubt help me refocus my life onwhat I want it to be and regain my confidence and control. I’m still straddlingthe gap between patient and survivor and look forward to being able to let goand come to terms with all of this.

It’ll be refreshing to fill my days withmeaningful, fulfilling projects and stimulation rather than doctor’sappointments, drugs, needles, and incessant medical logistics. I’ve got to moveon with living my life. I can’t just wait around for something bad to happen.It’s damn time for some good things to happen in my life. No more wallowingaround: If I don’t stop that gig soon, I’ll make myself certifiably crazy.

I did not go through the trauma that I’ve gone through sothat I could shrivel up at the first signs of struggle. Things are a littleharder for me these days, but with each new accomplishment, the award is thatmuch sweeter. I just need to rekindle that drive and motivation and not let thefear get the best of me. I know in my heart that I am fully capable of anything I set my mind to, it’sjust a matter of taking that first really scary step. This week’s accomplishment? I wassick, and then I got better, and then I went on a fall walk on both feet with my dog.

In the words of my man, Ray:

"Worry ... worry, worry, worry, worry. Worry just will not seem to leave my mind alone/ Trouble ... trouble, trouble, trouble, trouble. Seems like every time I get back on my feet she come knock me down again/ Worry. Oh, worry, worry, worry, worry. Sometimes I swear it feels like this worry is my only friend."

By Bike and Boat I Go

2011-10-14T11:38:00.000-04:00

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

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

“How about a real bike?” I asked him.

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

So I dusted off my bike and tried tooling around theneighborhood. Yes, it was a bit weird at first because my left hip flexors,calf and quad muscles are so far behind my right side developmentally. It feltbizarre, but so gratifying to be able to use my left leg muscles again in aconcentrated way.

After passing the neighborhood street test, Craig and I tookour bikes to our section of the paved East Coast Greenway trail, just a fewminutes from our home. It’s a long stretch of flat walking/biking trails that Igreatly missed using. The scenery is beautiful and everyone that we passedgives a warm finger wave from their bike handles or a smile and a nod of theirhelmeted head. I love it. I love everything about that trial.

My wheel (or was it my joints?) squeaked obnoxiously withevery revolution. Both are in need of air, grease, and a tune-up – each of us alittle out of practice. Regardless of the squeaky soundtrack, Craig and I had agreat time together at a slow pace with a good, steady cadence.

It was liberating and fun and romantic. With Craig there assupport providing the spotting, I was able to get my confidence and bike legsback again. Later in the week I went back for a solo trip along the quiettrail. The leaves had just transformed into colors of fiery reds and orangesand the trail offered the unique perspective of cutting right through them. Iflew over the dried, yellowed leaves that had fallen and scattered across thepath creating that distinctive autumn crunch sound as the bike tires rolledover them. The sun created intricate shadows and patterns amid the tree-lined,farm-lined and marsh land landscapes that I biked past.

At the end of my hour-long ride, I hoisted my bike into theback of my borrowed Jeep on my own and felt sweaty and dirty with foliageflecks and bike chain grease – fantastic.

After missing an entire summer of kayaking opportunitieswhile in the hospital and recovering in Manhattan, we took advantage of theIndian Summer that was this past Columbus Day weekend. So as to not make theadventure too challenging, Craig and I ditched one car down river then did along 3.5-hour paddle toward it along the picturesque Farmington River. It wasnear 80 degrees, hot enough for tank tops and shorts. Hot enough for Craig totake an unexpected dip into the murky river water after a not-so-gracefultransfer from dock to kayak. We were so concerned about me getting safely intothe kayak with my bum foot that neither of us considered that Craig might capsize.

It was quite an ironic situation to watch from my stablekayak vantage point a little down river. I saw him take the confident step fromthe crew house boat launch onto the kayak floor. The boat tipped a littletoward the dock then it continued to roll and I realized he was far beyond thebalance point and the kayak was bottom up.

He came up for air from the murk shouting: “Oh, shit!” manytimes over, while grasping in panic at the water all around him. I ferventlyglanced around at the contents in my boat and realized that yes, I had ourlunches in my dry bag, but his kayak was holding the dry box with our cell phones and car keys.I processed the pieces and realized the origins of the “Oh shits” and understoodwhy he was continually diving the 10 feet down to the river bottom shouting tome: “The keys! The car keys!”

Meanwhile his kayak (with its storage section flipped open:fail!) and paddle were floating past me downstream. He couldn’t leave the spotwhere he dumped it for fear that he’d never find the keys. So like a gulldiving for fish he kept at it with deep breaths and forged through river plantsand sludgy mud struggling to keep his eyes open peering through the siltywater.

“You’ve got to get my kayak,” he shouted in between riverdives.

“I got you babe,” I yelled back. Oh shit. Oh shit. I thought to myself not knowing how I was goingto catch up to his boat, flip it over, secure it to my kayak and paddle themboth together against the current and back to Craig. I have minimal upper bodystrength. I would be in big trouble if I fell into the no-doubt bacteria ladenwater, still full of junk from this summer’s hurricane and river swelling. Swimming in river water isn't exactly on the post-transplant "allowed" list. Ialso had no use of my left foot, so balancing and maneuvering were made extradifficult.

By some organic miracle I was able to grab the kayak with mypaddle and lodge us into a downed branch so that I could tie it up withoutputting myself any further down river. The tree trunk dam lasted long enoughfor me to be able to fashion my life jacket into a rope between our kayaks and withCraig’s kayak trailing behind like an awkwardly placed motorcycle side-car, Ipaddled against the river current toward my husband.

In the meantime after consecutive, exhausting dives, Craigcame up with the keys and the dry boxwith the cell phones, which he dangled at me from afar. Redemption! The only loss was hissunglasses and a bike lock we planned to use to tie up the kayaks at the end ofthe route – not a bad sacrifice.

With all my might I hauled those kayaks back to the dockwhere Craig sat soaking wet, river vegetation stuck to his goosebumped skin,eyes red from the sand they were no doubt filled with.

“Don’t worry, I got you babe!” I said again as I pulled up parkinghis kayak next to him like an expert backing a trailer in, impressed by my ownstrength and ingenuity in the situation. I couldn’t believe Craig dumped it.More so, I could not believe that he located most of our belongings. He wasbreathless, coughing up dirty water and swallowing pride – not smiling.

I kept it quiet and cool as he got into his kayak and wefloated into the center of the river. When I felt the drama had settled some, Ilooked at him again and said: “Is it okay to laugh now?”

We both burst out in laughter and then I started in teasinghim with corny jokes, which lasted pretty much the entire journey: “Nice dayfor a swim, eh?”

It was nice to be on the upside of the kayak of life foronce. Nobody’s invincible; everybody gets a little off balance sometimes. But when we do, it's nice to know that someone else is there. Once again we proved to each other that we make apretty good team when shit hits the fan or keys splash the river – or whatever metaphor the day might bring.

Day +119 Recovery Update

2011-10-13T19:31:00.002-04:00

Last week’s check-up at Sloan-Kettering was the smoothestthat I’ve had yet. A friend’s mother’s best friend, Renee, picked me up from myhome and drove me all the way into Manhattan. We hit no traffic on the way inand very minimal on the way home – a rarity. The smooth nearly seven-hourroundtrip commute allowed me the opportunity to get to know this incrediblygiving woman who offered up her day and escort services to help out a nearstranger. She incorporated a lunch visit with a friend while I took care ofmedical business.

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

After my CBC and metabolic panel bloodwork was drawn from mymediport, I looked at the nurse with a big, though cautious, smile and said: “Iliterally have nothing to report.” She ran down the requisite list of symptoms:“Any rashes? Fevers? Night sweats? Diarrhea? Stomach cramping? What’s yourbowel pattern? Numbness or tingling? Trouble or pain when urinating? Itchy ordry eyes?”

I shook my head side to side at each question indicatingthat I had no issues with anything on her list. This is a far cry from myinitial post-transplant appointments when I would have comments on each ofthose categories and usually a separate list in my notebook of symptoms thathad arisen, which I wanted to discuss.

“I go through this list because these are all things thatcould be signs of Graft vs. Host Disease,” said the nurse. “If any of thesesymptoms come up, you need to let us know.”

I understand. I understand that I am not out of the woodsand that GVHD can come at any moment, and can be with me chronically. I understand that it wouldn’t be a badthing to see a little creeping in, that it would show promise of a moreaggressive Graft vs. Lymphoma effect. I understand that we are veryaggressively tapering my immunosuppressants and therefore aggressively openingme up to auto- immune attacks. About fifty percent of patients endure GVHD after100 days post-transplant. Though, there is still a chance that I could get awaywith a cure and no GVHD at all.

I also understand that I don’t have any of these symptoms currentlyand with this understanding, I’ve got to take advantage of this time. Afterexamining me, Dr. Sauter was happy with my progress, lack of post-transplantissues, and encouraged by absence of any lymphoma symptoms. However, he likesdata and so do I. This is what makes us a good team. This time data will comein the form of a PET Scan. It has been more than two months since my last one.We want to see what is going on inside of me to be sure that there is nolymphoma on the rise and therefore be able to better determine if thisimmunotherapy is working.

Unfortunately, PET Scans provide such finicky data. Thetechnology catches any kind of metabolic uptake and is hardly conclusive, butas Dr. Sauter, who isn’t a huge fan of the at-times inconclusive evidence thetest provides, says: “However, this is your test.” The lymphoma I’ve had in thepast does not show up on other types of scans, so this is what we have to workwith and it’s the form in which my comparative data lies.

Our hope, obviously, is that there is no growth. My lastscan in August showed very, very tiny spots of possible cancer that would not be of concern except for my historywith the disease. We’ve now given a solid two months for my new immune systemto kick in and go after any rogue cells. There is much reason to believe thatit is working, or at the very least, keeping things at bay.

The impending Oct. 20 PET Scan means I am now holding thatmassive bag of anxiety over my head once again. If the past is any indication,the bag only gets heavier as the scan day gets closer: T minus one week. That’sonly one more week left of freaking out and creating incredible scenarios in myhead. I’m an emotional wreck swinging from elation to depression and backagain. I need to get better at handling this as these scans will be a reality for the rest of my life. My vast imagination can be a real damper on the scanxiety process. I’mvery hopeful and also very scared. I’ve had some chest fullness, which in thepast has been an indicator of disease on the rise, but it’s difficult to tellthat from the chest fullness that anxiety also brings.

But back to what I do know and understand for sure and whatI don’t need a scan to tell me. I am still feeling incredibly well more daysthan not. My head and heart are still open and clear. I am still free to livemy life now, no longer in the confines of that hospital room unable to controlmy surroundings and activities – never mind my bodily functions. There havebeen a few tough days this past week, which caused me to cancel plans withfriends and succumb to very early bedtimes and some self-pity crying sessions.The fatigue is still tremendous when it barrels in. However– and a big however– this past week has also provided me with some fantastic days, some of thebest of my life.

I talked to my sister, my donor, from across the countrythis past weekend and she told me that I sound like myself again, that it’sagain “Karin” in my voice, and that I’ve regained my sense of humor and soundedbright and strong.

“Sisterrrrrrrrrr!!!!You’re back,” she said, in her beautiful, loud and brutally honest vernacular.“I’ve got my sister back!”

This was the best compliment and the most conclusive data evidenceof health I could ever get.

Day +110 Recovery Update

2011-10-04T19:11:00.001-04:00

With one of my best friends, Meredith, at her

recent engagement party.

My foot is still broken, which means it’s still in a walkingboot. I have been toting around an extra 1.5 pounds for three weeks now. Thereis 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 runningto the West Coast anytime soon. Instead, like my favorite Jersey Shore gorilla, Ronnie: “Every Day I’m Shuffling.” Cue clubmusic.

I return to the orthopedic doc tomorrow to check on the bonehealing process. I can just about put full weight on it now so I expect he’llsay that it’s healing well. This is a far cry from several weeks ago when Icould not go up even our shallow porch stairs and in order to bathe, I had tosit 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 VitaminD supplements in addition to my multivitamin, folic acid and Magnesium that I’malready on per post-transplant needs.

On the subject of meds, the amount that I take is becomingless and less as the weeks pass. I am now down to 19 pills a day: Acyclovir foranti-virul prophylaxis, Coreg for my heart, Ambien to sleep, and Tacrolimus andSirolimus immunosuppressants in addition to the nutritional supplements. Noneof these causes me any unwanted side effects, which is a very refreshingconcept. I have continued to avoid any signs of Graft vs. Host Disease (GVHD)and with each week that passes without it, we’ve been dropping the amount ofimmunosuppressants that I take, continuing the careful taper off of theseimportant meds. At this rate of shedding 0.5mg every week, I will be completelyoff of suppression in about a month and my new immune system will be fullyraring. So far, my sister’s cells and I have been syncing perfectly.

I feel wonderful. I really, really do. I think that it canbe seen outwardly, too. There were many months there that I either avoidedmirrors altogether, or when I caught my reflection was completely confused bythe stranger staring back at me. Now, my eyelashes and eyebrows are fully back:lush as ever. My hair is slowly but surely coming in, though it’s very spotty.It’s coming back in some kind of reverse balding pattern. I can only hope thatit’s not a permanent problem, though there aren’t any guarantees. If it’s myhair follicles that gave up, but the rest of me keeps ticking then I reallycan’t complain about that. In the meantime, I’ve been wearing a wig when I goout. It was cut and shaped for me by a stylist in NYC who volunteers his timeat the Hope Lodge to help reshape the free American Cancer Society wigs intostyles more appropriate for each individual’s face. I actually kind of love it:it’s a messy pixie cut ala Halle Berry.

I have also been gaining weight – 1.5 pounds in one week – andam starting to fill out a little bit so that my bones aren’t jutting out of myskin. When I dropped to 105 pounds things became unsafe. Dr. Sauter got veryconcerned and I could not take looking at the shallow dips of my sunken cheeks.We had to consider options. After removing the Vorinostat chemotherapy pillfrom the equation, eating became much less traumatic. No doubt that the drugwas causing me anorexia. I literally could not face food nor stomach it and hadno appetite whatsoever. It was an awful and debilitating process to go through.Now, I feel hungry again and I eat. My bowels are beautifully formed and easyout. It’s a little celebration after so many months of agonizingly painfulstomach cramps and diarrhea. I think it’s safe to say that my intestines arefinally healed.

I am still missing 30 pounds, but I’ve purchased some pantsthat actually fit my new frame, and this has done wonders for my mental stateabout it all. I no longer look like a coat hanger holding up my too-bigclothes. A day at H&M with my mom did wonders for my spirit. She carriedall of the potential new outfits around for me while I swung through theclothing racks on my crutches wearing my anti-germ gloves and helped me get inand out of the pants in the dressing room while balancing on my one goodfoot. Now I have pants that don’tsag off my bum and a couple skirts that don’t literally fall off my hips.

Mentally, I am clearer than I have been in two years. Mymind is again quick and forward thinking. I can grasp concepts and no longerfind myself in that foggy-headed confused state that is chemo brain. I amflying through books and doing a lot more writing. When I have conversationswith people I feel more connected, alert and engaged. Activities are much moreenjoyable when I don’t have to put on an act or focus so much energy on simply standing up. My head is so clear that I plan to start back upat work (from home) later this month and have been in touch with my team thereabout projects that I can tackle. I look forward to the structure that willprovide and to the opportunity to once again learn, think, collaborate andproduce. I don’t want my brain to go to mush and I want to get back tocontributing my talents to the greater society. Working in hospitalcommunications, I look forward to putting all of this medical jargon I’velearned and experiences I’ve endured as a patient and observer to good use.

I am also driving myself around to local appointments anderrands again. My brother- and sister-in-law were generous enough to swap carswith me so that I can now roll around in their automatic Jeep Cherokee. It’s soincredibly liberating and has taken away that mental stigma that I was onceagain trapped in one space. I have learned through this process that I am awildly independent person with a penchant for freedom. I have no problemhoisting myself in and out and my bum left foot just rests to the floor mat whilemy right one does all the brake/gas work. I am so grateful to Eric and Rachelfor bringing it all the way down from Massachusetts for me without me evenasking: they just immediately suggested it when they found out I couldn’t drivemy stick. There’s not much in life that beats driving with the windows down andsunroof open singing at the top of your lungs on a perfect fall day. SometimesI even do an extra spin around the neighborhood to “check on things” on the wayhome from the pharmacy.

Emotionally, eh, well, we’re still catching up in thatdepartment. I can go from zero to 100 in a millisecond. I’m still verysensitive and very scarred from the trauma I went through. I cannot really talkabout the intimacies of my transplant experience without developing anincredible lump in my throat. I cry often at very little things. I also getvery happy and very relaxed and content. I also get very angry. I do a lot ofscreaming and lashing out. It doesn’t take much to send me into a tizzy: Ican’t handle overstimulation nor clutter nor negative energy in my life. I’vegrown more opinionated and less tolerant of idiotic people and need to work onthat. But overall, I am so incredibly elated to be where I am. Right now thehighs and lows are just a little extreme. I’ve turned rather crazy, but I kindof like it sometimes. I’m more in touch with and aware of everything that Ifeel and think, which obviously lends itself to positives and negatives.

There is also the compromised immunity piece. I am anal withthe cleaning and disinfecting of our house and on my husband about it prettyincessantly; what a nag I’ve become. I’ve tried to go into restaurants a coupleof times and had full-out anxiety attacks seeing everything and everyone asgerms carrying the airborne illness that I’ll no doubt inhale and not be ableto recover from. Paranoia is a big problem, and I’m still working on thebalance of living my life again, while keeping myself safe and sane. These arelegitimate concerns as my immune system will be immature for at least anothernine months and I am without any of my childhood vaccinations. Though the maskand gloves are gone except for at the clinics, a bottle of Purell is never farfrom me. I think I am doing pretty well with it all though. It’s just aboutmaking educated choices and sacrifices. It doesn’t help that when I starteating a bit of raw vegetables again, dozens of people die from e. coli andlysteria outbreaks in Romaine lettuce and cantaloupe. I’m back to frozenspinach for a while.

My Dad used to be a body builder in his younger days and hegave me his heavy bag to hang in our garage. I need to get some boxing glovesso I don’t shatter my hands … and then I plan to punch the shit out of it. WhenI get out of this walking boot, I then plan to kick the shit out of it. Then, Iwill do both at the same time. He’ll help Craig get it hung and give me alesson on how to properly punch. This will be good for my anxiety andfrustration as well as my arm and back muscles and cardio endurance. Today Istarted an ab and arms regimen with exercise bands and the ball. I miss walkingand hiking terribly, but I’m sure I’ll be back at it again in a few weeks –just in time for the ice, snow, and freezing temperatures. Maybe I’ll be backon skis this year?

On the opposite extreme, I made it back to the yoga studioyesterday for the first time since I’ve been home. Immunity precautions andthen the flight of stairs had kept me away. I had to make a few modificationsaround my broken foot, but was able to wrap it in an Ace bandage and stillbenefit from most all of the poses. The class was a gentle yoga class and maybeeven more so than the stretching, it was great to share a meditative space withothers and to get my stress in check and get back to a centered place of peace,at least for that 90-minutes of time. It’s difficult for me to be thatdisciplined on my own.

This Thursday I return to Sloan-Kettering for acheck-up/check-in with Dr. Sauter. We’ll go over questions and he’ll look meover for anything that might be concerning. I’ll also receive my monthlyPentamidine treatments to prevent PCP Pneumonia. Last week he gave me a bi-weekand I only had to get bloodwork checked locally. All looked stellar: WBCs 3.8,Platelets 147. I hope this warming trend continues.

“Maybe I'm crazy

But laughing out loud

Makes the pain pass by

And maybe you're a little crazy

But laughing out loud makes it all subside.”

-Dave Matthews Band, “Spoon”

Dietary Negotiations

2011-10-03T14:23:00.001-04:00

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

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

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

“A Ceasar salad. Just a plain Ceasar salad – with croutons –and shake-on Parmesan cheese.”

“You’re really jonesing for a salad, huh?” he replied, whilelaughing and assuring me that I’m not alone among transplant patients cravingthe crunch of fresh vegetables. “That’s fine. But no anchovies and wash thelettuce really, really well,” he added.

At the idea of anchovies on my salad I squinted my face likea baby seeing pureed carrots balancing on a spoon in front of him. That expression effectively showed my agreement of those terms.

“Not a problem. How about a Pumpkin Spice Latté fromStarbucks?” I inquired.

“Sure. I don’t see why that’d be a problem,” he said.

I lit up. This was going so well that I thought I’d push the envelope a bit. I feigned ignorance and smeared on my best puppy dog eyesaccompanied by a few blink blinks of my newly grown eyelashes, asking:

“Will I everbe able to have a beer or a glass of wine again?”

“You can do that now if you wanted,” he replied, to my fullsurprise. His nurse practitioner nodded in agreement beside him. “It may burnyour stomach though, but try it.”

“So I can have, like, a microbrew and don’t have to beworried about the active yeast process?” Ah,what an idiot! As soon as it came out I couldn’t believe I had said it. Iknew the answer, and I had effectively just blocked myself out of enjoying myfavorite Dogfish Head 90-minute IPA.

“Ummmm, well. Let’s just stick to wine for now,” he said.“But just one glass.”

“Of course,” I said, but he didn’t specify what sized glass,nor does he know how big my goblets are … .

“Anything else?” he asked.

“Nope. That’ll do,” I said, smiling back.

I could live a satisfied life feasting on Caesar salads,pumpkin spice lattes and wine. Great negotiation success!

Review of 50/50 - The Movie

2011-09-27T19:20:00.002-04:00

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.

Watching it as a cancer patient, I was impressed by the honesty and integrity Reiser wrote into the script. There were very tender and vulnerable moments that only someone who has been there could create. Reiser was able to write those in without being cheesy, forced or over dramatic – rather, just raw and real through powerful, subtle imagery.

***spoiler alert ***

The concept of truth was pervasive throughout the film. Having cancer at any age is scary. Having it at a young age comes with its own extra set of issues. First off, it’s incredibly awkward because no one expects it – not the patient or the friends, family and strangers. This discomfort was well exemplified with scenes of Adam (Gordon-Levitt) trying to break the news to co-workers, friends, his mom and girlfriend. There is no easy way to do that and the resulting emotional reactions by each were classic, funny and heartbreakingly true. Several times throughout the film it’s Adam who is holding up for everyone else and assuring them that he’s “fine,” a word that he often quips back with when everyone is constantly asking him how he’s doing. This was often my answer as well.

Other people awkwardly and rightfully stumble on the “right” thing to say to him. This led to many comedic moments that made me laugh out loud in recognition as people assume he’s going to die and immediately start saying their goodbyes or they just fill the space with awkward silence staring at him trying to figure out what kind of freakish things are happening in his body.

There were many very funny moments in the movie and Seth Rogan’s comedic talents have a lot to do with how well they were pulled off. He is fantastic in this movie, and a lot of that probably has to do with the fact that he really went through the scenario that his character, Kyle, finds himself in. He is the screenwriter’s real life best friend and he was there with him going through his whole cancer treatment process: two single guys in their twenties scrambling to figure out how to handle the scenario.

The important message the movie effectively promotes is that there is no one-size-fits-all way to handle the scenario. There is much absurdity and in that absurdity is a whole lot of space for sick humor because if you can’t laugh at the insanely frightening scenarios that you find yourself in then you’ll never make it out alive. This bodes true for many life scenarios – not just cancer. It was beautiful how these two best friends were comfortable enough to be grossed out, confused, and scared together while still being “regular guys” trying to use the cancer diagnosis to score chicks. Admittedly, I thought the chick-grabbing plot was a little much, but I understand the necessity for balance and for making the characters relatable.

50/50 isn’t a medical documentary. There was a love story and relationship drama. There were bar scenes, drunk and high scenes, and sex. This grows the appeal to a wider audience than those living with or touched by cancer and makes the overall theme of the movie easier to digest. There’s much truth to those scenes as well. Even though they have a disease, cancer patients do more than sit around treating their cancer. We also live our lives and therefore it was appropriate to have some extra plot lines going to create a rounded picture.

Cancer treatment and recovery is so multifaceted. It would be impossible to include everything that comes along with a cancer diagnosis within the time constraints of a film. There were a few themes thrown in for good measure, but I wish they had the chance to more fully develop. These included: the friendships forged with older cancer patients, feeling like an outsider being the young one, the pride hit associated with allowing his mother in, his adopted dog’s role in the healing process, complications with sex and the possibility of infertility. Ovearall, I think the film did as good a job as possible at balancing all of the pieces and focusing on many of the right themes.

The humor in the movie is brave and ballsy, which I really enjoyed. There is one scene where Adam is high on marijuana-laden macaroons given to him slyly by a fellow chemo patient. His exit from the chemo infusion room is a series of blurred and slowed images of the sick patients surrounding him in the hospital corridors and the ironic positive messaging of the murals on the walls, all of which he finds to be ridiculous and hilarious.

He passes a covered body on a stretcher being rolled out from the hospital morgue. Rather than tearing up, he bursts out laughing, separating himself from the situation. There have been many times during the past two years of treatment that I’ve found myself laughing at the crude scenarios I’ve found myself in because to think too hard or too seriously about them was just impossible. The more dire my situation got, the more punch drunk and giggly I got in response.

Though the role was tremendously well acted by Gordon-Levitt, the character of Adam was a bit too vanilla for my me. In much of the movie he seems to just go through the motions, never questioning or really taking action to be a participant in his care. His character remains fairly static and too quickly accepting of his proposed fate.

This was the case until one scene where he has a screaming, thrashing, crying fit behind the steering wheel, windows rolled up, the night before his surgery. It’s the first time that his emotions come to a hilt and I was stunned at how well Gordon-Levitt captured that helpless, desperate moment. I wanted more of those moments in the film, but I suppose if it was littered with them, then that one superb scene wouldn’t have resonated as much as it did.

The isolation Adam – and I’d venture to say all cancer patients – feels is well portrayed through many scenes of him staring into space from his bed or his couch. There thankfully aren’t cliché scenes of him groaning or wrenching in pain and only one requisite vomiting scene, but you can read in his eyes and in his stiff movements that he is wildly uncomfortable and feeling defeated. The cinematography is very effective in accomplishing this as well. These scenes were true to life and much more real than I’ve ever scene a portrayal of a patient. It was very honest: a young man just trying to get through the day and feeling completely disconnected, self conscious, and ridiculously exhausted.

The medical realities and hospital scenes were very well researched and accurate. I have a thick skin and rarely cry at movies, but I admit that the surgery scenes in particular hit very close to home. Watching his possibly last hugs goodbye with his mother, best friend, and mentally ailing father were very difficult to take. The lighting, scene staging and the sterile, ominous feel were very authentic. These scenes cued up difficult memories of my own and elicited many emotions.

The film isn’t done through any narration or switch in perspectives, but rather told from an objective standpoint leaving the audience to be able to put themselves in the shoes of each of the characters. This was a fantastic decision on the part of the writer and director as it allows the point to be made that cancer treatment is not just about the patient. It affects everyone close to that patient and everyone has his or her own ways of reacting and dealing (or not dealing) with the situation. He has the mom who wants to coddle him, the girlfriend who screws him over, and the bumbling best friend who tries his damndest to be normal in a totally abnormal situation.

I wanted to know more about Adam pre-cancer and post-cancer. I felt that his character could have been more well developed so that we had a better taste of what his life was like before: was this diagnosis a dramatic change to his lifestyle? Did he always have that relationship with his mother? Was he always a bit shy and removed? Always a push over? The film tried to establish this a bit by showing a scene of his life as a public radio producer, but it was a weak attempt.

The movie ends abruptly, though sweetly. There is no bow tied neatly to wrap everything up. At first I was disappointed. Then I realized that the ending was perfect because there is no clean resolution to a story like his. Once you have cancer it is always part of your life, the fear of recurrence is always there, and the journey isn’t over when the chemo regimens end and the surgery scars heal. It’s an evolving process and the audience is appropriately left to ponder where that process takes Adam and his relationships.

The film opens to the public this Friday, Sept. 30. I highly recommend checking it out.

Rebirth and Redesign

2011-09-25T22:22:00.007-04:00

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.

Homecoming and Day +95 Update

2011-09-19T15:13:00.009-04:00

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.

I took one last look at the common area and the deck at Hope Lodge Manhattan and Craig rolled in after trekking to NYC after a day of teaching to load up all of my belongings and whisk me away in a matter of 15 minutes. It was like pulling off a Band-Aid. My exit was all business. I had no capacity to handle sentimental moments. We were all focused on getting me out of there. Hope Lodge had been the perfect solution for me during my convalescence period, but when it was time to go, it was time to go. I knew that the relationships I had formed there would remain – and they have.

My reaction to coming home was not at all what I expected it to be. I had no idea how fragile I still was until we pulled up our driveway. Except for the former brick front walk being now completely buried by grass, nothing had changed. This was comforting and terrifying all at once. I had gone through this tremendous physical and emotional transformation and by some strange logic, I thought that our house would have, too. It terrified me to think that I was expected to just slip back into the same roles, duties, place in the world that I was prior to leaving because internally it all had changed.

I sat in the car in the garage and sobbed as Craig began to unload a summer's worth of bags. I sobbed for a good long while, afraid to enter. I knew that behind the door was Sammy Dog slobbering and wagging away as also was our kitchen, our living room, our bed, but completely unexpectedly, I was so afraid to see them all.

I made it about a foot into our dining room entryway and Sammy hesitantly came over to sniff me. She had a bacterial infection, so it was especially important for me to not cuddle on her too hard. It was mortifying and heart breaking because I wanted her to know so badly how much I missed her but I was paranoid about contracting anything. I pet her with my latex gloves on and it just wasn’t the same not being able to feel the silkiness of her fur.

I was paranoid and uncomfortable with everything. My reaction took me completely by surprise. I was yelling and crying, nitpicking and breathless. It was too much all at once. The sense of responsibility and fear I felt walking back into our home was completely consuming. I kept yelling: “It’s too soon! I’m not ready!” I felt as if I had been crushed into a ball and thrown full force at the wall to splat and slither down to see where I landed on the bottom. It took me a full week to peel myself back off that floor.

A big solace in the homecoming scenario was the welcome home banners my friends had come in and created for me, the balloon and flower bouquets that they brightened the place with. They’d also spent days cleaning our home for us. As I walked into the kitchen Craig played a video for me of several of my friends dancing to a mix of “welcome”-themed songs right there in my kitchen the night before. It helped me to realize that no matter where I was at that point that my friends were there for me, and celebrating for me, even if I wasn’t ready to celebrate for myself.

I went into hiding for several days. I did not want to see anyone but my husband and my dog. I was angry, paranoid, confused, sad, and felt out of place. My family and friends have been tremendously respectful of that, and I realize now that I needed a mourning period. I’ve been home for two weeks now and my outlook and mental and emotional stability are much improved. I’m more comfortable in my skin again and once again feel at home in my home. It’s no longer a foreign, unyielding place, but

I’m realizing that it’s a place that’s accepting and safe. I didn’t know how I was going to function without the security of constant monitoring and isolation, but once I had a few days to test myself out, I realized that I was both stronger and weaker than I thought and it was just a matter of figuring out which areas needed to catch up. I guess I’ll call this my incubation period.

For several weeks I hated who I had become and how I was treating the people around me. I now realize that I was fragile and incredibly sensitive and I was rightfully so. I have been through as close to hell as I would ever like to go. Adaptation, processing and reevaluation will be a long haul, but I’m finally back to that point of self love and refocused on healing.

The mind shift happened around Day +80 or so. I got out of the streets of Manhattan, began walking around the neighborhood at home on my own and I drove to a local doctor’s appointment on my own. My independence was coming back along with my self-confidence and respect for the healing process. Then, on Day +87, September 11, I broke my foot. In a cruel twist of fate, just when I got back on my feet, I was literally knocked on my ass.

I wasn’t even doing anything cool or adventurous, which is the real kicker to me. I had just returned from a solo 1.5-mile walk and was standing on the edge of my driveway talking to Craig and our neighbor. Sammy was chasing after a ball and apparently I got in the way. She was tearing after it and I had my back to her so couldn't see it coming. She went to take the corner but her weight slammed right into me. Her height was at just the right level to take me out at the knees. Down I went, ass to the grass. The guys helped me right back up and I felt fine, just thought I had overextended my ankle a bit.

I looked down and saw a superficial cut on the top of my foot begin to bleed. When I realized that the top of my foot had rotated so much that it scraped the pavement I knew that wasn’t a good sign. As soon as I tried to walk on it the pain was incredible and my foot started to swell immensely. I cried and swore the whole way to the emergency room. This was not because of the pain – though that certainly contributed to the sobs – but more because I knew that it wasn’t going to be a good scenario and that the whole situation was just a slap in the face after everything I’d been through. It was a fluke accident that would set me back so much.

X-rays revealed that my left fifth metatarsal bone was fractured. The way it broke is also called a “Jones Fracture” or “Dancer’s Fracture.” It’s a very common break in athletes who over-rotate their foot while jumping or falling and the tendon ends up pulling off a piece of the bone. It’s a hairline fracture and all the other bones around it are in place, but it’s broken, just enough to be incredibly annoying. It’s been one week on crutches with my foot in a hard walking boot. I’m just getting to the point where I can bear some weight on it and limp around the house. I go up and down the stairs on my butt and get up and down with the help of the crutches. My upper body is still very weak from transplant, so it makes the whole thing extra difficult. No doubt I will have rocking shoulder muscles and a bulging right quad after all of these dead lifts and squats I’ve been doing.

The loss of my walking ability is incredibly discouraging. I also can’t drive as we own two standard cars and it’s impossible for me to operate a clutch. So, I’m at the mercy of others for another six weeks or so as this bone heals. There’s not much else to say about that … . I’ve never broken a bone in my 29 years, so why not now? The scenario was worthy of an SNL Weekend Update “Really?!?!” segment with Seth Meyers and Amy Poehler.

Other than that debacle, my intestines have been quite a wreck. I was having severe stomachaches, diarrhea, and lost my appetite completely. For the past few weeks, eating food has become a mental game. After just a few bites of anything I tried to force down, I would feel as if I could vomit. I shed another five pounds and now weigh less than I did coming out of the hospital. None of my pants fit and it hurts to sit without a cushion, as I have nothing but bones to put my weight on. It’s depressing, frustrating, and very, very scary.

This past Thursday it was decided to try taking me off of the Vorinostat chemo drug that I’m currently on in hopes that that was the variable causing the anorexia and diarrhea. If it is not that, then we need to worry about Graft vs. Host Disease of my intestines, which is a bigger issue. I have been off the Vorinostat for four days now and I feel hunger again. The debilitating stomachaches are gone and food no longer seems like an enemy. This is HUGE. I think that we found the culprit.

I am traveling back to Sloan-Kettering every Thursday for bloodwork and check-ups. The 3-hours-with-no-traffic drive is a lot and requires coordination of a driver as I’m not allowed on public transportation, nor can I drive myself now. Thank goodness for great family and friends. My reports have all been positive besides the stomach issues. My blood cell counts are at normal levels, meaning that my sister’s marrow is creating everything that my body needs. In the next few weeks we will check another PET Scan to see if it’s also eliminating lymphoma. All the signs are encouraging that it is.

The post-transplant fatigue is still tremendous and daily naps are a must, but this is to be expected. I’m coming to terms with it and beginning to better understand my needs and limitations. In the first two weeks home I wasn’t giving myself enough credit. I was mean to myself and frustrated with my progress, but now I realize I’ve done a damn good job and I’m so proud and feel so fortunate to be where I am. I am alive and functioning. There were times when I really questioned whether I’d ever get to this point. I need to be grateful for the path I’ve traveled.

The weather here in Connecticut has been something out of a Norman Rockwell painting. It’s perfect crisp, cool air that’s warm in the sun and brisk in the shade. The sky has been an untainted blue and the leaves are just starting to take on a tinge of bronzed color. It’s an ideal time for renewal and rebirth. I’ve come out of my timid shell and have started seeing friends again and enjoying being outdoors and am thrilled to “just be” with Craig and Sammy in my beautiful home listening to the birds from the porch and watching the rhythms and routines of the neighborhood. The broken foot has forced me to slow down and let my body catch up to where my mind is at. Maybe sometimes it takes a bone fracture to teach the ultimate lesson in patience.

Kitchen Charades

2011-09-01T17:52:00.005-04:00

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.

She was pounding her chest and opening her eyes and mouth wide. Nope, I didn't get it. I'm saying words back to her knowing full well that she can't understand me. I think that the first part of the story was about someone throwing out her chicken breasts from the freezer? I tried to explain the Sharpie name and room number rule (ID it or lose it) but don't know how far I got. My eyes and body were tired and weak, not conducive to non-verbal communication skills.

Then I started to get concerned that something was desperately wrong with her husband as her animations got more pronounced and her eyes swelled with tears. Her hand kept going up to her mouth in a pickle claw shape. Then she'd hit her stomach and say "medicine. medicine," then turn around to make her hand appear as if it were exploding out of her bottom in a violent motion.

"Your husband's medicine hurts his stomach?"

I got only nods of disagreement in return. She was not impressed with my Turkish accent attempts.

"He can't keep any food down? He needs medicine?" I implored, all the while thinking I should call 9-1-1.

Nope, not it. At this point I'm standing in the middle of the kitchen with the box of peanut butter Puffin cereal in my hand munching right out of it like I was watching a show with a bucket of popcorn at the movies. All I wanted was a bowl of cereal, but I knew there wasn't time for that and I would just have to swallow my nausea until I figured out how to help this woman.

This exchange goes on for five minutes or so. She was clutching her belly and making faces of pain and I was coming back with "stomachache? hospital? vomiting?"

Then she started doing the hand explosion from the rectal area first. She'd raise her hand to her bottom in a shooting motion toward that area, rub her belly, then do the hand explosion motion again like her fingers were coming out of her anus. In ... relief ... out. Hmmmm. Something went in, face of relief, then something came out.

I stared at her through my fingerprint smeared glasses in deep concentration. Then it came to me.

"Your husband took a shit!" I had known that this was a painful issue for him in the days before. "He got an enema and they blew it out of him?"

"ENEMA! ENEMA! YES!," she rejoiced at my recognition of this. "Much better! He much better!"

Oh, dear God, I thought to myself. There was in fact no emergency. She just wanted to tell me so badly that her husband was eating a little bit again and that they were able to blow out some bowel movements with an enema. I told her how oh-so-happy I was for them and left with the cereal box in hand to go munch it dry in privacy. If I had stayed there who knows what the next charade card would have held.

What will I do without all of these lovable characters in my kitchen every morning?

Tell The World

2011-08-29T21:01:00.004-04:00

After 12 weeks and 1 day of being away, Friday night I am coming home.

A Newcomer to the Treatment Game

2011-08-28T11:50:00.008-04:00

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?

The treatment plan has been tweaked a bit again. I agree with the science and efforts behind it. I understand the necessity. I realize that this may be the only way we can keep ahead of the lymphoma. But even with all of the positives surrounding this plan, it is draining on my spirit and my body to yet again be putting more toxins into me – novel agent or not – even non-traditional chemotherapy treatments can take their toll. I learned this on the clinical trial of Panobinostat and Everolimus at MD Anderson. Going back onto therapy is difficult for my psyche to take. I’ve been on the healing tract and had been so encouraged to think that I’d never have to take more treatment – ever. But that is now the case and I need to focus on the positives that it will bring.

We now have the final radiologist’s report on my PET Scan and a more solid plan of attack. The spot behind my breastbone – the spot that’s always flared up first after every single chemotherapy agent – is inconclusive. There is still the chance that it is just my thymus gland revving like crazy. However, because of my history of quick relapses, we are treating it as if it is the Hodgkin’s trying to flare up. The same goes for the spot on my sacrum/pelvic bone. It is showing a very, very mild amount of uptake on the scan. The radiologists are measuring it as just above background level. These spots are each very faint and nothing tremendously alarming. However, the idea that the lymphoma could be flaring and the worry that it will grow faster than my new immune system can go after it actually is quite alarming.

But Dr. Sauter and his Sloan colleagues have a plan for me. He has seen this in his other refractory Hodgkin patients as well. This plan has actually always been in the back pocket and we talked about it several times while I was undergoing the transplant itself. It’s kind of a “seal the deal” plan. We knew from the beginning that my case would be a difficult one as I’ve heard again: when Hodgkin’s Disease is bad, it’s very bad.

Dr. Sauter did some of his training at the University of Michigan and his colleagues there are doing investigations into the targeted novel therapy drug, Vorinostat, as an agent to prevent Graft vs. Host Disease (GVHD) in allogeneic stem cell transplant patients. Vorinostat is an FDA approved drug, but not tested widely in refractory Hodgkin Lymphoma patients, though it has demonstrated promise. Vorinostat is a sister drug of Panobinostat, which is also an HDAC protein inhibitor (a protein found in HL cells.)

I was put into a very good remission from the combination of Panobinostat and Everolimus before going into my allo transplant. So, the hope is that the Vorinostat will also have some disease fighting effects against any lymphoma inside of me in addition to possibly preventing graft vs. host disease altogether. One of the immunosuppressants I am on – Sirolimus – is a sister drug of the Everolimus so hopefully I’ve been getting some anti-lymphoma effects from that over the past two months as well.

While adding the Vorinostat, we are also tapering me off of the Tacrolimus and Sirolimus immunosuppressants, therefore letting the reigns off of my sister’s immune system. This weekend I’ve been taking more of each to get me up to therapeutic levels before we start the taper – ideally tomorrow.

I asked point blank if I’m in a bad place, if this means the transplant failed and was assured that no, not at all. My case has actually been quite simple up until this maneuvering that we’re doing. Again, we haven’t even given my sister’s cells the chance to go after anything. Now we are going to both “push and pull” against the disease by doing some “jiggering” to keep it at bay. Dr. Sauter is still encouraged and so am I.

Basically the Vorinostat novel therapy agent is an added insurance policy to bridge the gap between the (possibly) growing lymphoma and the time it will take for my newly minted immune system to be able to recognize the lymphoma cells as bad and take them down. It should also help to balance my sister’s cells as we release them on the attack with the threat of GVHD being closely monitored. I’ll remain on the Vorinostat twice a day for about four weeks over the course of the immunosuppressant taper. Then it will be time for another PET Scan. Hopefully there will be no drama from now until then.

If this week stays drama- and GVHD-free then there is still the possibility that I will go home next weekend – as in six days from today. I’m doing my best not to get my heart set on that as I know how quickly things change, but oh is it an exciting prospect. Craig and Sammy Dog are both home now waiting for me, and Sammy has been reunited with her favorite river. My friends and my mom and her friends whipped through the whole house giving it an impeccable clean in advance. My Dad put four new tires on my car. All is ready for life at home. I just need to get there.

My mom is here with me now and we’ve spent her first few days anticipating and now coming down from all the hype over Hurricane Irene. We walked along the streets last night just before the skies really opened up and it was so eerily quiet. I live just up the block from Penn Station – one of the most highly trafficked areas of Manhattan – and there were only scatterings of people on the street. Gone were all of the buses and all of the street vendors. All public transportation shut down and every store in this concentrated shopping area was shut tight: even the Manhattan Mall across the street. It’s still a ghost town today.

We fell asleep to the sounds of strong sheets of rain barreling against our 12^th floor windows and were jostled awake a few times by the creaks and shifting from the high wind gusts against our 59-floor high-rise apartment building. But the morning brought only wet streets and the warm, heavy feel of tropical air breezing through the concrete alleys formed by all the towering buildings around us.

Last night all of us patients and caregivers were a little punchy with anxiety and anticipation. We had quite the raucous crowd gathering in the kitchen. We laughed and laughed until we realized we had all gone a little crazy. After all of that excitement today we’re having a sleepy day today composed of eating, napping, reading, writing and games of Rummy 500. We hope to get out at some point back into the streets. I miss being around Craig terribly, but I love having my mom here with me and cherish this time we have together, as crazy and unpredictable as it may be. How lucky I am to be surrounded by so much love.

Tomorrow we’ll go back to clinic and I’ll see the doctor covering Dr. Sauter’s vacation and find out my release fate. He already signed the papers saying that I could go back to CT if I continued to feel well, but this doctor will have to make the call. I plan to dress to the nines and put on my biggest smile. I am ready, ready, ready to go home but I know that I need to do what is most prudent. I’ve come this far. It’s coming up on two months here at Hope Lodge: three total in New York City. Even if it’s just for a night I am in desperate need of my own space, freedom, fresh air and woods. I want to be home in time to see the leaves change.

[Washington Square Park the day before the storm]

[Manhattan shutdown]

[Calm before the storm]

[Prime storm viewing spot in the common area]

Day +67 Scan Update

2011-08-24T16:42:00.007-04:00

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.

On initial read, Dr. Sauter thinks that the spot in my chest is just my thyroid being highly active, in a hyper state after the trauma my body's gone through. The thymus gland is the center of the immune system where all the T-Cells are created and that might just be what is happening – lots of T-Cell growing as my new immune system is still building. The spot on my sacrum may be some lymphoma, but it is very small. Dr. Sauter says that if anyone looked at just the CT portion of my PET/CT Scan that they would never think I have lymphoma – it is all clear. But before making any conclusions, he wants to get the radiologist's read.

There is nothing shocking or exploding regarding cancer growth on my scan pictures so this is very good news. I don't think any of us are surprised that there may be a little activity and this is not the end of the world by any means. My oncologist said that the only reason we even consider it to be lymphoma is because of my history. If it was any one else's scan, the tiny hot spots showing wouldn't signify disease.

In short, it is not the perfectly clear scan I had at 30 days but it is far, far, far from disease ridden scans I've had in the past. It's now time to give this immunotherapy thing a chance to work. We know that the strain of Hodgkin Disease I have is resistant to chemo, so it's no surprise that the lead-in transplant chemotherapy did not put me into a long remission. That is why I went through this whole process in the first place. Now we're going to go after those tiny cells in a whole new way – forever.

So, onward we go with the slow taper off of my immunosuppressants. This was always to be the plan around 60 days. For these first two months my new growing immune system has been held to therapeutic levels. Now we are going to start letting off the reigns very slowly. The hope is that as we do that, my sister's donated cells (the graft) settles in with my body (the host) almost seamlessly. We want my sister's immune system to be different enough from mine so that it will recognize and destroy the lymphoma cells where mine couldn't, but not so different that it recognizes my body as foreign and goes after it ... but we want it to a little bit because that means it's likely going after the lymphoma too ... it's all very confusing. Now I just watch for any symptoms of Graft vs. Host Disease (GVHD), report them, and they'll put me on the drugs to fix it.

I have a good enough handle on the process where I feel comfortable. I'll leave the details to the professionals. I know that I am in very good hands here at Sloan. They've got this figured out. I'm just along for the lifesaving ride.

In very, very good news, barring any unforeseen severe GVHD symptoms during this first week of tapering, I will get to go home on Labor Day. This idea thrills me, but I'm trying not to get ahead of myself. I'll be sent home when it's safe and when the time is right – fingers crossed that is in 12 days! I'll be back to NYC weekly, but it'll be so wonderful to be at my own home in between.

Craig left for home today to get his classroom set up and started with the school year next week. Being apart will be very sad and difficult for us – to say the least. But we had a fabulous last day together strolling through SoHo and Little Italy where I had my first post-transplant fresh pizza pie at Lombardi's: the first pizzeria in America. We found it to be incredible and worth the effort of having them take all the food safety precautions I require (i.e. don't slice the pizza with the rarely washed pizza cutter).

I'm having a sleepover with my college roomie, Frankie, tonight who is here in the city on business. I'll get to escape to her swanky hotel suite just two blocks away from The Lodge. Tomorrow my mama comes in for caregiver/girly time for the next 10 days. Hopefully I'll be heading back to Connecticut with her when she leaves ... .

I am feeling much, much better. Stomach is good. Back aches are faded. Chest fullness is reduced. I'm walking and exploring a lot (still donning my mask and gloves). I'm sleeping (mostly) through the night. I'm feeling fully in my body again. Perfect health is on its way. I am so grateful for how far I've come. It's quite unbelievable.

Day +66 Update

2011-08-21T18:26:00.007-04:00

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.

At least in Sloan-Kettering's transplant protocol, it is not recommended to pull an allo transplant patient off of his or her immunosuppressants until at least 60 days after the stem cell transplant is performed. The first two months are required to give the donor immune system time to mature and settle in and also for my body to get stronger and used to the new cells inside of it. We've been in the introductory phase: testing each other out. The Tacrolimus and Sirolimus ensure that my new immune system stays chill until it's ready to fully integrate.

As of last week we started making some moves. I was taken off Pozaconazole, my anti-fungal med (the chalky liquid one I was taking three times a day). As expected, because of how this interacts with the Tacrolimus I've actually had to raise the amount of that drug that I take. That should level out by my next bloodwork levels check on Tuesday.

Tomorrow is PET Scan day. On a positive note, I've only had six days to freak out about it and what it reveals. However during that time, it’s been all I’ve thought about. I have tried to make mental plans for dealing with whatever is going inside of me, but that is pretty much impossible. There are just too many unknowns and too many possible scenarios to comprehend.

In the simplest terms, the PET Scan results will help to determine how quickly Dr. Sauter tapers me off of the Tacrolimus and Sirolumus altogether. If there is any sign of cancer progression then we need to taper more drastically so as to allow my newly built immune system to go after it. A fast taper means more risk for graft vs. host disease. The preferable approach is a slow taper to ease my sister’s immune system in, but we can only do a slow taper off the meds if I am still cancer-free.

It may be obvious that this holding pattern is extremely difficult to sit in. A lot is riding on what tomorrow’s scan reveals. I’ll find out the results at clinic on Tuesday.

A fellow refractory Hodgkin’s Disease warrior – someone that I deeply admire and draw inspiration from – recently wrote about what it’s like for cancer patients in the days before and after a scan. Bekah puts it so clearly, eloquently and honestly in a recent blog entry. She frustratingly didn’t get the news she was hoping for after her scan. Please keep her in your heart as she continues the search for the key to her cure.

Some inspiration found on the label of my bottle of Honest Tea today:

“Courage is not the absence of fear, but rather the judgment that something else is more important than fear.” - Ambrose Redmoon

Community Living

2011-08-20T15:10:00.009-04:00

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.

Why Transplant Patients Have Extreme Precautions

2011-08-16T21:45:00.004-04:00

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.

Carry a Rock

2011-08-13T16:01:00.004-04:00

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 ... .

Pre-Triathlon Speech to ACS DetermiNation Athletes

2011-08-11T16:26:00.005-04:00

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.

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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 12^th floor to those chairs out on the patio – on others, it’s walking a mile. I still have a lot of healing to do, but I am fortunate to have glimpses of a strong body again and I know that I will get there. To be cliché: treatment recovery is a marathon, not a sprint.

I don’t share my story to make you live in fear of disease, but rather to inspire you to continue on your paths of wellness. You only get one body and it is moving to see people who are nurturing it and exercising it in the way it should be treated. Inevitably, we’ll all hit bumps in our road, we’ll all have some kind of bout with illness, but the adventure is made much easier when you’ve given your body the tools it needs to get through unimaginable physical, emotional, and mental challenges. Not only are you keeping yourselves fit, but you are doing it in honor of those of us who have lost our health and giving us hope to endure. Because of the contributions you’ve made, we will find health again.

Day +54 Update

2011-08-09T15:18:00.013-04:00

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

2011-08-02T18:39:00.006-04:00

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%

2011-07-28T22:13:00.006-04:00

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.

From Love Karin XOXOXO

2011-07-26T22:30:00.005-04:00

Today especially, I celebrate the life of my sweet and sassy Gramma. She'll forever live on in my heart, and I fight my battle in honor of hers - my most special fellow cancer warrior.

Gramma (Connie) Brothwell

February 9, 1936 - July 21, 2011

Our Gramma was a spitfire. She loved to zing us, affectionately tease us, and would laugh and laugh at the jokes she’d crack and good-humored tricks she’d pull. This, in turn, was always guaranteed to bring a smile to the faces of all who witnessed her endearing antics. She was witty, confident, sarcastic, and unpredictable in incredibly charming ways. Her affection for her family – both our very small immediate one and her large extended one – was deep and honest and unwavering. That was proven in how delighted it made her to be the first to call each of our family members and sing the “Happy Birthday” song to us on our special day every year – without fail.

The three – now five – of us grandchildren had an open and chummy relationship with our Gramma. We could talk to her about anything and she would give it back to us like it was. We never had to sugar coat things or act stiffly polite. Our relationship was warm, easy, and comfortable. We could be real and raw. She loved us all for who we are and embraced the differences in us.

Gramma loved to keep in touch with everyone. She’d leave long voicemails, sometimes getting cut off by the machine and she would say: “I love you very much” at least three times in each. We each have stacks and stacks of cards, letters and postcards that Gramma would mail us while we were away at college, often including a $20 bill to “do something fun with” or a crisp $2 bill for good luck. The word “From” on the preprinted Christmas gift tags never expressed it right for her so she’d always write “Love” right after it. We came to open each gift from her by reading out loud: “From, Love Gramma.” Same went for the passages in Hallmark cards. She’d underline the words she wanted to emphasize, sometimes with two or three thick lines to show how much she meant them.

Her notes were penned as if she was having a conversation with us: “How are you doing? Good? Good. Glad to hear it.” She wanted to know everything about what we were doing and couldn’t wait to fill us in on her latest escapades. She loved to talk on the phone and could do it for hours catching up with anyone who was up for a chat. She’d doodle while doing so and I’d always marvel at the little white notebooks with pages full of absent-minded etchings that littered her kitchen table.

Not only did she love to chat and visit with family, but with perfect strangers, too. My mom would always come back with some kind of story from the cancer treatment center about how Gramma had the whole room of cancer patients chatting it up and laughing. The nurses and doctors who cared for her always got a kick out of her openness and eagerness to tell and listen to stories. Anytime we were out to eat at a restaurant together she’d flirt with and chat up the servers. Anyone who had the pleasure of being around her became a quick friend. Even dogs loved her – all would nuzzle right up to her and lick her hands furiously in affection.

You couldn’t be around my Gramma and not feel an immediate attraction to her and her incredible people skills. We’ve all been on trips to the casino with her – one of her favorite pastimes – and you could guarantee that if we wandered away from her for a bit we’d come back to find her raising her fists in the air in celebration with three of four fellow seniors. They’d be high fiving each other or leaning their heads in together to chat while the digital wheels of cherries and bars spun.

Gramma was there for every milestone in our lives as well as the every day occurrences. We were so fortunate to have a Gramma just up the street from us to grow up with. A day at Gramma’s full of games of Chutes and Ladders and Trouble was always something we looked forward to. She was there for all of our dance recitals, all of our sport games, each of our high school and college graduations. There she’d be with flowers to congratulate us along with a visible swell of pride. It was very apparent that she loved us grandchildren tremendously by the way she kept such close track of us, squeezed us extra hard with each hug, and always left a lipstick imprint on our cheeks with the kisses she’d shower us in.

She loved lipstick and girly things. It was important to her to take tremendous care of herself. She always did her hair, her makeup, wore her perfume, matched her outfits to her purses and shoes and loved jewelry. She was beautiful. She taught my sister and I how to powder and lotion and would love to take us shopping and have us model clothes for her. She cherished her gold jewelry purchased on her travels to the Caribbean. As kids we’d tell her not to wear it swimming in the ocean because she’d attract sharks, but she wouldn’t be caught without them.

We all vacationed together in Cape Cod and New Jersey every year, she even took the entire family on trips to the Bahamas where we enjoyed shows, beach days, shopping and virgin daiquiris together. Grams loved wallowing on the beach. She didn’t like going deep enough in the water where she couldn’t touch, but she thoroughly enjoyed floating in the shallow waves on her blow-up raft or noodle until she’d wash up on shore with the tide, walk back out and do it all over again.

She was a woman who knew what she liked and didn’t like and went with it. She was comfortable in her skin, independent in her thinking, strong, and did what she wanted in life. She certainly wasn’t bashful. She loved to sing karaoke at my uncle’s for all to hear and couldn’t help but snap along to the music. Two Christmases ago she pulled up all the begrudging males in the family from their chairs for a chance to be her dance partner and swing around my parent’s kitchen with her.

She could play cards for hours against any opponent who was willing to take her on. Most recently Rummy 500 was her game of choice. While we were growing up it was Crazy 8s or Go Fish. At family events, it was Michigan Rummy. She was delighted when she beat her opponent – a highly competitive lady – and if by chance she lost, it meant more games until she could be victorious.

Now, we’ll all carry her in our hearts. Her easy laugh will echo in our memories every time we have a late morning breakfast at a diner, see a bluebird, a poodle, or the movie Pretty Woman showing late night on TNT. We’ll think of her every time we eat a tuna melt, spend a day at the beach, see a lady in Capri pants, go dancing, or catch a rerun of The Price is Right hosted by her “boyfriend” Bob Barker.

Her absence will be greatly felt by all who loved her, but we can take comfort in knowing that after a beautiful, full life capped with a tremendous display of strength at the end, she is now at peace, reunited with my grandfather and causing a ruckus up there with her siblings and best friends whom she so cherished. I can picture her bopping along through endless lines of chiming slot machines with infinite pocketfuls of shiny pennies to drop into them.

Cash out; Cash out, Gramma. We love you forever and always.

A Productive 34 Days

2011-07-20T21:07:00.009-04:00

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+25

2011-07-11T22:13:00.006-04:00

It is Day +25 and I am thrilled to report that I'm feeling strong enough to finally write – at least at this current moment. On July 5^th I left the hospital after a 27-day stint. Craig and I moved into the American Cancer Society's Manhattan Hope Lodge, free housing (and so much more) provided to cancer patients. I've been here for six days and am so thoroughly impressed and in awe at the generosity of this place. I am comfortable here and love the fact that I can say I am now a New Yorker – I always did have a tinge of regret that I never lived in the city and now, here I am. Maybe it’s not the circumstances I expected, but I still get the opportunity to live in a 12^th floor corner “studio” with huge windows facing the gorgeous architecture of the buildings surrounding us on 32^nd Street, nestled between 6^th and 7^th, the fashion district, Chelsea, and Koreatown just blocks away.

Even though I’m here because I have cancer, I still get to have a rooftop terrace to sit out on with succulents and greenery and fashionable, comfortable patio furniture. When I look to the right I see the Empire State Building up close and personal. When I look across the street I can see the iconic sign for Macy’s Department store – the biggest retail store in the world and the center of Virginia’s Santa Claus revelation. When I look to the left I see a brick office building with the most intricate, lush climbing ivy that I’ve ever seen. It moves in the wind revealing ebbs and flows of light to deep, rich greens. Just past that there’s Madison Garden and Penn Station – the busiest train station in North America. There are parks and common areas and outdoor movie screens and a 3 floor 99 cent store ….. so much around.

I’d say I’m in a pretty cool place. Only problem is I’m supposed to avoid crowds, which is a wee bit difficult with x-million people crossing through the area per day. So far I’ve been watching them like little ants bustling around while I sit like a cat on a perch looking down from my room above. I love the unique beauty, the action, the bustle: it infuses life into me while I currently move at a snail pace. It’s a nice balance. I am allowed to be outside; I just need to wear a mask and gloves and not touch or rub up against anything or anyone – contact is the biggest enemy, but the chances of germs hopping through the open air are slim and my doc wants me to be out and walking little bits each day.

My start of physical recovery has been hit or miss by the hour, literally. Side effects fly in and out with no warning. But I would say that overall I am mountains better than I was last Tuesday when I was released. When I say mountains I mean I can be on my feet for more than 2 minutes. I mean I’m not constantly nauseous. I mean I’m not doubled over with abdomen pain. They are small accomplishments, but to me they are mountains. Slow and steady will win this race.

Craig has been there to catch me through it all and handed off the caregiving to my mom this weekend who also got to catch a bucket of puke, an unexpected full Saturday at the clinic, and a lot of snipping and swearing and crying on my part. Here’s a sampling of what I’ve been going through over the past five days: intestines aching with the newness of processing foods, severe migraines, swollen and achey joints, diarrhea and stools of shapes and colors and smells like nothing a human should produce, a few vomit sessions, several nausea swoons, a couple heaving emotional breakdowns, a regular patch of moss growing on my tongue, achey teeth bones, a very painful hematoma in my left chest/shoulder area – basically a big internal bruise and pooling of blood from when they put in/pulled out my catheter, the concerted effort to choke down 22 pills a day and a spoonful of gaggerificic white milky antifungal medication (Posacozanol) three times a day to wash it all down – a medicine that costs $1,000 per cough-medicine sized bottle and lasts a week (I’m grateful for the $75 co-pay), and of course tremendous fatigue from all of the above and the fact that my body is rebuilding itself from scratch and getting used to my sister’s blood sysyem being inside of it.

According to my mom, I said many things that Kristen would say this weekend and I blame her genes for the migraine-filled Saturday as severe headaches are something she is very prone to. I can also “blame” her for keeping me alive and giving me this literal second chance at life, so I guess that gets her off the hook, probably a free pass forever. Love you, sis.

But truly, each day gets better. I was in pretty rough shape, but I suddenly have some clarity again. Today I am wearing jeans (no, not even the pajama jeans currently being hawked on TV commercials) for the first time and I have not needed one cold pack or hot pack on any parts of my body. The clouds in my head have parted and though I still need a hardcore daily nap I was able to walk a few city blocks today.

I have been back to the transplant clinic at Sloan three times since my inpatient breakout. This will be the case for the next several months, which is why I need to stay here in the city. At clinic, my blood is drawn so that they can see what the levels of immunosuppressants are in my body. I take drugs called Tacrolimus and Sirolimus, which are the ones that control my/my sister’s growing immune system – the levels need to be constantly monitored and the amount of each drug changed as needed. The medical team also checks my blood count levels and all of my chemistries.

On Saturday (my very low day), I received a bag of red blood cells, a Magnesium boost and hydration, but otherwise all of my levels have been looking very good. This means that my sister’s stem cells are working to turn into what my body needs: my white cell level is good, platelets have stayed level and my reds are remaining in the anemic range but nothing worrisome, or new for that matter. Craig and I spent the morning in clinic today and all of my chemistries came back great; I was even taken off of my potassium supplements, a testament to finally being able to eat more and therefore getting my nutrients from actual food, and maybe more importantly, not shitting it all immediately back out. Many of the meds that I’m on can also deplete me of nutrients so supplements will be required for a while.

As expected I’ve dropped a lot of weight. I’m down to 112 pounds today (so about 16 pounds from my “average.”) That’s a bit scary to me, but doesn’t seem to be concerning to the transplant team. I’m really doing my best to amp up the eating and the weight will come back in time. According to People Magazine, I’m the same weight as Paris Hilton and skinnier than Kristen Cavelleri from The Hills – isn’t that something to strive for? I kid, and that actually makes me sick to read that being promoted. I look forward to building back some muscle and getting back my booty – all in due time. A lean svelte body is much better than skin on bones.

On the subject of looks, my hair is gone completely except for some little spikes in the front; it bothers me more this time around as it took so many months to grow back last time. I have all of my bottom eyelashes, but only a few top lashes on each eye. My eyebrows have thinned significantly, but are still there. I’ve lost all of my leg hair except for patches on each knee. I have a few new scarred holes in my chest from the catheters. My skin has more chemo burns and darkening. These are all very inconsequential and unimportant things, but I can say that it is more difficult being bald and eyelashless this time around. I don’t like looking in the mirror and seeing such an obvious patient staring back to me. I guess I really did get used to having my curly hair and being able to hide behind that a bit even though I was still receiving treatment. But again, insignificant I know. I am just tremendously grateful to have gotten this far.

I am clearer and can start to look back a little bit onto what I’ve been through. I’m still not quite able to look at pictures of me in the hospital and I’ve not been able to bring myself to read my last blog; I have no recollection of what it says, I only remember that I was crying through writing it all and quite tripped out on medication. I see now that apparently I got through by just putting my head down and ramming through like a freight train. I dealt with each issue as it came up, focused on that and pushed through it. There was not room to do much else. I don’t remember much at all; I don’t remember what I talked about with people nor any of the really bad stuff. I remember the good things, the unreal kindness of the medical staff, and the times that I felt a little bit well. It’s like I had blinders on through the difficult stuff; it comes back in little glimpses and I shudder at those memories but am also proud.

I know for certain that what really got me through was the stacks of mail – packages and cards and letters that brought so much joy, the texts and Facebook messages and e-mails from friends, family, co-workers, perfect strangers, fellow cancer warriors. Visits from truly special close friends – my childhood best friend traveling all the way from middle Connecticut, by herself just to spend the afternoon with me, my parents, my brother and sister. It didn’t matter that I wasn’t strong enough to respond to people nor coherent when they visited, the support just continuously pours in. Like I said, right now I don’t necessarily remember what they said, but I do remember it lifting my heart. Pictures of my life outside of that room, of my family, friends, beautiful places I’ve been and seen and conquered and Miss Sammy, Sammy, Sammy got me through.

I still cry when I think about the deep kindness displayed from the people in my life. I have a second cousin that sent me a “daily photo from the farm” every day with a picture and funny anecdote about her kids or their animals or the beauty of nature on their country home. I have a dear friend who sends me a “daily photo of the outside” from some of her favorite spots in Hoboken to city and nature scapes. My mom’s best friend sent me an encouraging text every, single morning without fail. At my request, every night, whomever was with me would tuck me in and read me poetry. Our friends who are watching Sammy would Skype us in with her and have created a Facebook photo album constantly updated with funny pictures of her and their dog. That’s just a glimpse at the love that I felt all around me lifting me up.

Even to write about it is making me cry at this moment. I am forever, ever changed by what this experience has revealed to me about the human spirit and what true connection means. And my husband and immediate family? Words can’t even begin to describe the support and love and encouragement I’ve gotten in that department. My husband is cut from an incredible mold; he is with me by my side, always.

Sigh. So that is where I am at right now. Tomorrow I look forward to a breath-focused yoga class being offered here at Hope Lodge. Tomorrow night a group of singing lawyers is coming to entertain us and later in the week I’m going to take advantage of a session with a Qi Gong healing touch volunteer. There is much more to be written about the oasis that is this place and the amazing people from around that globe that I’ve met here so far and who are right with me in their own cancer journeys.

Medically, I am back to clinic Thursday for a levels check. Next Monday I’ll get a PET Scan and Tuesday a bone marrow aspirate to see what’s going on inside. The look at my bone marrow will reveal how much of my sister’s immune system is within me. The PET Scan will give us an idea of what’s going on with the lymphoma – if there is anything at all.

I am one quarter of the way through the big “first 100 days” and so far I’ve made it through without any major complications and no signs of graf vs. host disease, though onset doesn’t usually happen until Day+60 or so. Though very tired, I am grateful, humbled, proud and in love with life no matter how very, very, very difficult it might be sometimes to function in it. I can still feel the breeze on my naked head and spoon with my husband on a warm summer’s night. That makes it worth anything and everything.