arteyesalways: Intentions 2012

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 “New Year” reflection blog. Instead of writing my reflections and intentions with the start of the new year, I’ve been reflecting for the first 31 days of 2012. Sounds good, 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 like intention. To be honest, being about a month behind is about right for me these days in several respects. But that’s okay. Time has slowed some, procrastination and hesitation have increased. Focus has dimmed and concentration has been lacking. Shiny object over there? I’ll follow it. I am so tired most days that it is difficult to get to things that I think I most want to do. Though, I’ve been finding myself very busy with a full, rich, rewarding life. Despite the physical weights, I’ve had an incredible start to 2012. Maybe what I thought was 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 of the ride.

I truly have been writing this blog in my head for the past 30 days. I’ve thought incessantly about putting fingers to keyboard and getting it out, but for whatever reason, it isn’t until this arbitrary deadline of the end 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 in early January. I see where I was coming from and I remember being in that place, but it reads like an entirely different person. I sound so young. I cannot believe the evolution that 12 months has brought and at the same time how quickly 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 flowed like water. The looking back at 2011? Not so much. It’s still raw and delicate and 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, plowing through like a pile driver. In that post from Jan 2011, I stated that my intention for the year was “to be mindful in everything that I do and fully invested in each experience – from the simplest to the most complex. To live each day with intention and an open heart, grateful for every moment that I have.” I fulfilled that promise to myself to the extreme.

I am proud to say that I lived 2011 as intended. It’s an important disctinction to say that things didn’t happen as I “expected,” “planned” or “intended”, but that how I reacted to them did translate through. I don'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 I lived those times to the fullest, whether it was on my knees in tears begging for 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 would be. I wouldn’t have made it through without that mindful focus and full investment in the life-altering choices and sacrifices that had to be made. When you are missing your health and it takes every ounce of strength to perform most any activity, then mindfulness comes easily. It’s easy to fully absorb the wonderful moments and too easy to fully absorb the difficult ones as well.

I was 100 percent invested in all of the experiences I had last year – 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 that it hurt sometimes – it’s tender in there. It opened up wide enough to allow me to feel emotions that I never felt before: sheer fear and deep sadness and helplessness 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 friend who went through the same ordeal. We were talking about whether we should have recorded 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 to forget. Those awful, intimate details are something that I don’t want to relive and maybe I don’t need to “process” them. I remember the tender moments, the moments of deep love and great gratitude for the special people in my life and the medical staff who became family to me. If that is all I remember, then I am okay with that.

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

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

My hope is that now that I reached my nadir, it is only positive regeneration from here. I inevitably had to break at some point. I believe that the regression started happening when I broke my foot in September after enduring so much physical pain and rebuilding during the summer. It caused me further frustration and loss of independence. Then, when the November biopsy revealed with hard evidence that lymphoma was still growing and I had to get back in the game, I really lost it. Anything since my transplant that feels out of my control or puts any limitations on me is something I have great difficulty handling.

It’s almost like I grew huge wings after regenerating my body 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 balance and couldn’t take flight. I am now strong and understanding of myself enough to know how to work the wings. I’ve startedto lift their weight. I am not yet soaring, but I can visualize myself flying through the clouds. There was a very dark period there where I couldn’t see that. It was as if someone physically nailed down my wings – more and more nails kept coming to further cement me to the ground as more tragedies happened all around us. The more that I struggled, the tighter the nails gripped. It made me angry and sad and resentful of everyone and everything flying around me with ease while I lay there broken.

Angels in America Part I

What do I do with the tremendous weight of these wings I have been given? When they first painfully appeared, they weren’t the weight of feathers, but instead concrete. The tremendous pressure of carrying those wings was too great. I was given this precious new life with the gift of cells from my sister, of the science and knowledge of my doctors and the researchers who made it happen. Everyone wanted me to survive. I wanted to survive, but I also wanted to quit sometimes. But how could I? I was reborn but didn’t know my own body and my mind couldn’t catch up with this quick, unnatural transformation. So many people wanted for me to be okay. Maybe physically I was, but mentally and emotionally I was not. I was in crisis. One of the most moving plays I’ve ever read and seen performed is Tony Kushner’s “Angels in America.” The cover artwork of those plays: Part I and Part II is something that has always resonated with me and now is exactly what I am describing. At the end of Part I, a prophetic angel 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 has begun.

Angels in America Part II

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

My intention for 2012 comes in the form of a Joseph Campbell quote I came across while grappling with the difficult life events at the close of 2011. It is a simple concept, yet an intention that will take much conscious work to make my every day reality. I want to stop trying to assert control in a situation 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 other parts of my life and to do things without worrying so much about the outcomes. I am up to the challenge and look forward to the rewards it will bring when I look back on it next January.

2011 Highlights and Milestones:

Worked throughout the year with my childhood friend, Lisa Bourque, who is now a certified professional life coach and owner of Wild Heart Coaching. She helped me process and focus many difficult scenarios. I am forever grateful for her guidance and the discoveries we made together and for the patient phone talks she had with me and in person during my drug induced time at the hospital and upon many visits with me at Hope Lodge.
Geared up mentally, emotionally, and practically for donor transplant at Sloan Kettering in NYC twice last fall and winter before finally finding the right time on the third attempt when I began the process on June 9
Packed up and relocated with Craig for five weeks to Houston, Texas to participate in a clinical drug trial
Feasted on real Southern BBQ
Adapted to a completely different way of life and incredibly hot and humid temperatures
Saw Sublime, Kenny Chesney, Pat Green and Kings of Leon perform for free courtesy of Houston NCAA basketball championship mania
Navigated this new city with Craig: found an apartment, learned the bus and light rail system, got a handle on the massive campus that is MD 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 two amazing friends (Betts and Brenna) who opened their Houston apartment to us, let us borrow their car, fed us, kept us laughing, taught and entertained us for nearly two weeks as my body got used to its new drugs and we got out bearings
Witnessed our home state UConn Huskies win the NCAA National basketball tournament and three other incredible games, while we were in Houston, thanks to some very generous families from West Hartford. The Huskies were there when we were there – of all cities in the nation
Saw Lady Gaga in concert and got to witness Craig’s cousin Lauren perform alongside Gaga. Again, in Houston, of all cities in 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 aphaeresis machine to produce a bag of 11 million stem cells to save me. The cells that would bring me a new, strong immune system after my own had been wiped by chemo. They went into my body on Day Zero (June 16) without any problems and have been fully accepted and integrated.
Made it 28 days as a hospital inpatient in a quarantine room that I was not able to leave. And those who were brave enough to visit me there (my parents, sister, brother, friends: Kristen R. (who watched Beauty 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 was there every day, wearing constricting masks and gloves to enter and stay around me. But they did. And that is love.
Mustered the strength to get out of the hospital 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 much time 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 meals twice – as most all of it came back up. But I learned to ask for the “Chef’s Special’s” menu – that was where it’s at. That and the potato soup. Even though I ended up wearing it a few times, it was still good.
Had my bottom lip fall off bloodily and painfully – twice
Had another Quention cathether inserted into my chest (under anestehesia for this transplant, gratefully). Then had to have a second inserted when I was at my very lowest and the one in my chest got infected. Out they ripped it and in they jammed another.
Was totally dependent on pain medicine for the first 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 make it to the bathroom. Poppable heat packs for pain sites in my back, jaw and chest were a staple as were sanitary napkins and the Cottonelle wipes and soft toilet paper from heaven that my mom brought me for my terrible days of incessant diarrhea
Fluctuated 10 pounds day to day from all the fluid I was carrying and learned how to walk on my heavily weighted joints
Learned the meaning of freedom on July 6, my release day. The Manhattan air and hot summer sun felt ethereal as it enveloped me for the first time in a month. I cried and cried for sheer joy to be standing on my own two feet on the sidewalk that I had been staring down at from 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 during the most difficult summer of my life. I couldn’t be there to say goodbye as badly as I wanted to be
Had my first clear PET Scan immediately following transplant, albeit it was short lived
Was humbled over and over again by the outpouring of support Craig and I received at our home, in Texas, and New York – the cards with words of encouragement and the exciting packages with uplifting gifts never stopped coming whether we were down South, in the hospital, or living at Hope Lodge. They said we broke the record for the most mail 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 into their homes without hesitation and made her a part of there’s (Melissa, Ryan and Serena, Mr. and Mrs. Wolfe, and our neighbors The Wests). I learned how much I desperately love that crazy dog and to know she was in the best of hands was so assuring.
Lived with Craig and with rotation subs in by my mother and brother at American Cancer Society’s Manhattan Hope Lodge along with 100 or so other cancer patients of all diagnoses, treatment paths, ethnic and cultural backgrounds. I shared kitchens with 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 place like nowhere else.
Learned the healing art of Qi Gong with a volunteer healer each week who helped me work through my emotional and physical pain
Honed my yoga practice to accommodate my healing body with the work of volunteer Salvador 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 hilarious group Cherub Improv that would come to entertain those of us living at Hope Lodge
Celebrated four beautiful years of marriage together with Craig on a Rickshaw tour through midtown and Central Park by a man who knew every movie reference in the park (especially Ghost Busters)
Endured a painful bone marrow biopsy which revealed 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 cell counts have been flourishing
Was honored to speak to dozens of athletes from American Cancer Society’s DetermiNATION program as they geared up to fundraise and complete the NYC triatholon.
Became a germaphobe and a food safety nazi to protect my newly minted and very delicate immune system
Along with my mother, survived Hurricane Irene with stocked-up nonperishibles and little flashlights in a strange building with compromised and confused cancer patients from all over the world. It was surreal to see the streets of midtown completely abandoned with all stores boarded up in advance of the storm. It was eerie and utterly beautiful to take a walk together while the winds were still calm enough.
Felt the fluke earthquake that hit Manhattan, though I was so tired and uneasy, I just blamed it on my symptoms until I saw the New York news that night
Dropped down to 106 pounds and could not face any food even after I returned home. I’ve since gained back nearly 10 and am sitting comfortably at 115.
Broke my left metatarsal bone in my foot and was 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 found the end of her long journey with Multiple Sclerosis and breast cancer
After months with dozens of low-microbial diet resctrictions 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 with families from both sides, though it was difficult missing the women that were so dear to our lives. I cried as my Dad did the traditional reading of “The Night Before Christmas” as I felt so warm and cozy inside snuggled around my parents, Craig, my sister and Sammy dog. I cried because I didn’t want it to be my last Christmas. I want to see the lights of our beautiful tree again. This year we adorned it with the 1,000 cranes that were made for me before I entered transplant by a total stranger. It was stunning.
Craig and I traveled to the West Coast for the first time, exploring the deserts of Palm Springs and Joshua Tree Park via Hummer 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 to spend time with friends that we cherish deeply: a few from childhood and another couple that we’ve only recently met and feel like we’ve known forever. The beauty of 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 your problems are significant under the drop back of awe-inspiring mountain ranges and ocean cliffs.
Shockingly, we lost a friend on New Year’s Eve that was dear to Craig and whose family – especially her brother – we are both extremely close to: the man who introduced Craig and I back in high school. It is painful and heart wrenching watching him and his parents struggle after the very tragic loss of their sister and daughter
Been humbled and honored by the new friendships that have sprouted over this past year – friendships that never would have been made if not for the extenuating circumstances that I am in
Tapered off of immunosuppressants very aggressively 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 been affirmed 20-fold – just take the example of the mysterious elves who dropped gifts and poems at our home every night for 12 days bringing us so much joy and light at a very difficult time. They were total strangers to us and now we hold them very close in our hearts and hope to be lifelong friends. What a wonderful opportunity for Craig and me to be able to pay it forward.
Watched a dear friend waver through pain and grace 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 behave oddly as my mouth flares with white growths and tracks and my body flares with red, hivy ashes, all over, at any given time. Is this signs of Graft vs. Host Disease? 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 down by my new immune system – it’s starting to buck and flare as it realizes that it’s not in its old home and going after my systems like enemies. We’ve got to get 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 bottom line is there is some sexy refractory Hodgkin Lymphoma research going on right now, and I’m at the cusp of it, eager to get onto the next sets of clinicial 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, I made the big decision to start seeing an oncology psychiatrist to get my head in check. It has been the best decision I have made. We see each other weekly and are the perfect fit for each other. He has been a trememdous help in teaching me how to eliminate this “it”, this ball of anxiety, and allowing me to find me again. I am so proud of the work we’re doing on that leather couch and of how far I’ve come in just a few weeks. Our talks have been instrumental to my healing process. Having a professional, third party to talk to that is intimately familiar with all of the issues I’m going through is invaluable. Plus, we hit it off so well that it’s easy, comfortable and not intimidating at all as I thought 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 my husband
Learned from my mom how to knit (the beginnings) of a scarf
Learned from my brother and his fiancée how to shoot a 9mm shotgun and covered the target pretty well as a first timer at the shooting range. Great stress release!
Started working with a health and wellness coach, Ashley Gutermuth, who runs independently healthy at www.independently-healthy.com. We graduated college together and I’ve been so impressed by the knowledge that she’s given me about juicing, cancer-causing sugar, anti-inflammatory diet, cooking in advance for the week, foods that can help my chemo symptoms, the benefits of essential oils and we’ve only just begun the program. I look forward to traveling this wellness path together.
Both Craig and I are juicing nearly every day now and are 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 by professional 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 and public readings and hope to find success enough to build a solid freelance base 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 wedding then to Nevada to finally see my sister and her habitat, along with my parents and 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 the chance 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 beyond belief.
My little brother is GETTING MARRIED, likely this fall, to a woman that we love and admire. He told me at our holiday party that he was saving up for a ring and that he was going to propose. This news couldn’t have come at a better time. It filled my heart with deep joy. When he called me last week to tell me that he dropped down on his knee on a random Wednesday 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 one Labor Day weekend. Two more of my dearest friends got engaged over the holidays and likely will be married this summer as well. That’ll be seven celebrations and counting to look forward to. Another packed wedding season will make up for the five that I had to miss last year while recovering from transplant.
I turn 30 on June 29. Many say that they dread turning 30, that it sounds so old, that they don’t want to admit that they are no longer twentysomethings. I am thrilled to be turning 30. There have been many times when I didn’t know I would make it to 30 and when the day comes, I will celebrate ‘cause life is short but sweet for certain, as Dave would say. Not only will I turn 30, but I also turn 1 year old. Living one year after an allogeneic 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 extraordinarily celebrate all three of these birthdays and all that we’ve overcome in this past year. Bouncy house?

I have so much to live for! As my therapist told me to remember 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, to love, to be loved, to explore, and to contemplate, despite this disease. I’ve made it so far – 7 months and 15 days post allo transplant. I can’t dwell on the bad, I have to use it to propel me forward.