A Diagnosis and a New Direction

Dear Friends,

As many of you know, two months ago I was diagnosed with Hodgkins Lymphoma. I ended up in the Emergency Room the night before Easter after waking in the middle of the night with chest pain. A CT scan revealed enlarged lymph nodes in my chest, indicative of a much greater problem than I was prepared for. I was sent home to enjoy Easter with my family, knowing that the life I had long taken for granted would soon be challenged.  I relished in my children's joy and innocence on Easter morning, smiled as they found their baskets and bit into chocolate bunnies, absorbed the psalms and sang along with the choir in Mass, stared up at the clear blue sky during an egg-hunt in the backyard, then hosted Easter dinner as planned surrounded by both sides of the family, poignantly noting just how perfect it all was.  The next two weeks were spent in and out of doctors’ appointments which all concurred that something was clearly wrong in my scans, and alluded to any number of different conditions and cancers. So what do you do when you find yourself full of such worry and uncertainty, recognize that your life and the life of your family, your husband and children are all about to change, but not quite knowing how drastically or quickly that change might come?  Well, I went to church, sometimes many different churches in the same day. I took comfort in the tearful intentions of others who also lit candles or found themselves in an empty pew at odd hours. I noticed a picture hanging next to an altar which read, “Jesus, I trust in you” and repeated this over and over to myself until I was certain it was true.  I closed my eyes and prayed and every time I opened them my gaze would settle on Mary, her image in a stained glass window or portrait on the wall.  Early one morning when the church doors were still locked, I found myself actually holding hands with a statue of Mary in a garden behind the rectory. You think of all the “what ifs”, you imagine all the “what if I never”s. You brush your daughters’ hair like you have never felt such smooth silk before. You read that book with your nine your old, like you meant to do when you gave it to him at Christmas. You let your little one sleep in your bed; one night you let four children sleep in your bed (no-one gets much sleep). You enjoy date-night with your husband, ordering too many cocktails, then walk arm in arm through the city like you did when you dated in college. You have your family, brothers and sister join you for dinner, have your sister sleepover and keep you company into the dark scary hours of the night, distracting you from your thoughts. You text frantically with your best-friends. You eat a Popsicle with your toddler and find yourself completely enamored with her little legs dangling off the edge of the deck, her big eyes staring into yours, her long thick eyelashes blinking in the wind, then smile and laugh to yourself at her sweet sweet lisp, wondering if it's always been that apparent.  You host an after dinner dance party in the living room, you take your oldest out to lunch. You remind each of your children how much you love them, and tell them they are perfect the way they are and how you hope they never change. You tuck Rosary beads into your pocket, your repeat the Lord’s Prayer and Hail Marys in your head throughout the day. You pray with your children, your parents, your husband. You cherish everything about the normalcy in your day.  And then the date of your surgery and biopsy arrives. 

It was the day of the now infamous Boston Marathon. I arrived at the hospital at noon, and the surgery began promptly at 2:00 that afternoon.  I was well intubated while the bombs ignited just miles away. The surgery was more complicated than planned, a large lump was taken out, my thymus needed to be removed, the incisions were larger, and chest tubes were needed.  I was wheeled out of surgery which went two hours over-schedule and came to, in the recovery room to hear nurses explaining to the patient across from me that she was involved in an explosion and brought in to surgery to have shrapnel removed from her chest.  I was only able to make sense of this, hours later when my husband and mother explained what had occurred at the finish line of the marathon while I was being operated on.  Over the course of that surreal week in the hospital I recognized I was far from alone in my state of worry, sadness and anxiety. I realized once again just how fragile and unpredictable life can be. The hospital went into lockdown on two separate occasions, soldiers with bullet proof vests and machine guns roamed the halls, the victims were identified and just beginning to face the reality and devastation of their situations. On Thursday of that week, I sat in a wheelchair and was wheeled from Brigham and Women’s Hospital to Dana Farber to meet with a specialist for my biopsy results.  Much was a blur, but the fact that six months of chemotherapy were to begin five days later when I was still recovering from major surgery, was more than scary.  I wept for myself and the short term hopes for my family that would not be; our April vacation in South Carolina, the half marathon I was training for I would no longer be able to run at the end of May, the return to the dance stage in the spring recital, excited for my daughters (now ballerinas themselves) to see their mother in action, strengthening my tennis game, summer on Cape Cod hopeful that my youngest three were perhaps now old enough to allow me to actually bring a chair and relax at the beach, vacationing with family in Mattapoisett, and returning to school in the fall (I had just been admitted to a Post Baccalaureate program at Brandeis University to begin my study of medicine, of all things).  I wept for my children who I wished never had to have their sweet childhood tainted, who will see their mother sick, who will not receive the best of me, my full energy and attention.  I wept for how much quicker they will grow up now that oncologists and chemotherapy are part of their vocabulary.  I wept for my parents and in-laws who were beginning their twilight years of retirement and travel but will instead be accompanying me to hospital visits, helping to care for me and their grandchildren. l wept for my husband upon whose shoulders much of the heavy lifting will fall, already attending to five bedtimes and waking with my early risers, packing lunches, and getting the kids ready for school; attending to those most chaotic hours alone while juggling the demands of his own busy work schedule. I even wept for my grandparents who are now in their mid nineties and days have turned to worry. I was scared, sad and questioned why this was happening. I wondered why now, at 34, with five children, the oldest eleven and the youngest not even three? Why now when I was getting ready to return to school and the dream I always saw for myself when I graduated from college? Why now when I was so busy and active, teaching my own daughters in ballet, helping my boys with school work and tackling the never-ending to do list?  Why now when there was so much I had planned and when my family needed me so?

 I was suddenly roused from my grief the day the bombing suspects were caught. Soon the city rallied together, uniting with pride; Boston Strong. From the depths of the tragedy, people joined together and hope was ignited, the promise to finish the race emerged. The good of the city never shone brighter as heroes were recognized and good seemed to triumph. I was inspired to find the meaning in my situation and almost immediately I was greeted with an unbelievable outpouring of support.  There were calls, cards and messages, letting me know I was loved and would be prayed for.  There was a Meal Train organized by my playgroup which was soon filled three nights a week through the end of October. Another night was added and the generosity continued. The Meal Train calendar completely filled and now my family will be receiving meals four nights a week through November. Friends from many different facets of my life all the way to the principal at my children’s school, signed up to bring my family dinners. Friends of friends I haven’t even met volunteered to feed and comfort my family. To think of so many people preparing, cooking, carefully labeling and delivering these wonderful meals for a family of seven, each made with time, care and love, is beyond humbling.  There were touching emails and sympathetic smiles. There were neighbors who stopped by to offer comfort, cookies, gifts and groceries. Then there were the beautiful flowers which arrived in a steady stream from across town and across the county. My house was turned into a botanical garden reaming of beautiful perfumes. Edible Arrangements arrived and as helpers came by, they were able to enjoy fruited skewers as my children clamored for chocolate covered strawberries. A best friend over-nighted a package from Hawaii, another arrived at my door with a month’s worth of Hot N’ Sour soup from my favorite Chinese restaurant. She then helped pull together a birthday dinner for my sweet Addison who turned three the very same day as my first chemotherapy session. My sister’s 12 best friends who are now spread across the country and overseas organized a package of hope to be delivered to me with words of inspiration and good luck charms. Friends put together baskets for me, carefully selecting gifts to help me face the months ahead with greater ease. There were calming foods, healing lotions, rejuvenating juices, balms and snacks and things to take my mind of off cancer all together. Friends have dropped off so many wonderful magazines to take with me to treatment, which I have then been able to donate on to the hospital. Two days after my diagnosis, my best friends from college arrived at my door; one driving from Connecticut, another leaving her newborn, two more rescheduling work and on-call hours to be there for me when I needed them, bringing gifts and laughter. A colorful prayer quilt arrived from a cousin’s church in California made by dozens of parishioners who prayed for me as the sewed. A prayer scarf made with dearest intentions arrived from Pennsylvania and another from Mattapoisett. My cousins from Philadelphia presented me with a Kindle Fire to keep me entertained during the long months ahead, and others gave me a Vitamix which my nutritionist at Dana Farber had recommended.

The cards, calls, texts and wonderful “checking-in” emails continued. I found I am the lucky recipient of a prayer chain in Vermont, and the Nuns of Charity in Virginia. I am blessed to know that Masses have been offered in my name in many different churches in many different states. A friend who has only just recently completed her treatment for breast cancer, attending chemo throughout the last trimester of her pregnancy with her third child, presented me with a package full of all things she found useful when she went through her ordeal, tucking in the same inspirational book someone had given her as she set out on her course. Most helpful was a four page typed letter filled with insights and advice for navigating Dana Farber, chemotherapy, and motherhood with cancer. Through her own personal experience she was able to give me the kind of information which would have taken months to compile; information on wigs and acupuncture, handling nausea and allowing yourself “worry time”. Each day that I have returned home from chemotherapy I have been touched to discover a carefully wrapped gift on my doorstep which she has left, reminding me to be proud of how far I have already come and giving me strength to persevere.  She has become a trusted friend and resource and I promised her I would someday pass along what she has given me and be that resource and friend to someone else just beginning their fight. Friends have hosted lunches and dinners and a "Girls Night In" for me. A babysitter I have used since she was a high school student eight years ago accompanied me and my girls to their swim class and ballet lessons and helped me throughout the day following my first treatment, still unsure how I would react to all the new medications. At the end of the day she refused to let me pay her saying she was just happy to help. Another sitter on my street, now a college graduate, came over to offer open availability and free babysitting whenever I need it over the next six months. Friends and neighbors have taken to call when they are on their way to the market to see if there is anything I need.  Other times I have returned home to find that a week’s worth of groceries have been dropped off, or a huge supply of Costco items; snacks, water bottles, fruit and gallons of milk have found their way from a friends trunk to my front steps. My aunt’s famous homemade chocolate chip cookies have arrived weekly since my surgery, perfectly packaged from several states away-a true comfort food for my children and me. Adorable pajamas, a carefully sewn blanket, homemade granola, beautiful plants, fruit, homemade juices, sunhats for when I lose my hair, cupcakes, and toys and gifts and quiet activities for my children have all found their way to me. I have had gift-cards arrive in the mail from the closest of friends, from acquaintances and from people in town who have just heard of me and my story. I just learned that family friends together with their ten year old son participated in the American Cancer Association’s Relay for Life, walking, raising funds and lighting luminaries in my name. Without me having to think about it, rides were arranged for my kids. My boys were picked up for art and baseball and evening sports and parties. My girls were driven home from school without me having to ask. Playdates were set up and my children have been welcomed into so many loving homes, not only giving them a welcome distraction but giving me a chance to rest and recoup. Not a day has gone by where I haven’t checked the mail, or turned on my computer to find a touching letter moving me to tears. When I least expect it, when I need it the most, there are words from a friend, a relative, someone I haven’t seen in months, someone in London or someone around the corner, their words finding their way to my heart, enveloping me, comforting me and giving me hope and strength.

And I feel I would be completely remiss if I didn't mention my family and all they have done over these last trying months. Team Amanda (as the call themselves) made up of my husband Jim, my parents and my sister Tammy, have attended every Doctor’s appointment with me, arriving with notebooks, printed out questions and then diligently take notes, transcribing medical jargon, and asking insightful questions. These are long appointments, all in the city often starting early in the morning, my sister making a point to be there despite them overlapping with her classes and study time as she prepared for finals to receive her LLM (an advanced law degree). I’m happy to report that despite spending so much time with me at hospitals, she passed all of her exams with an above A average and received her degree at the very top of her class. My father, despite still working, has become the liaison working between my doctors and me and also has been a permanent fixture on the sidelines at all of my boys games and then at my house in the evenings helping with bedtime shenanigans. My mom has been my constant strength, holding my hand through it all, the first person I saw coming out of two separate surgeries so far and often saying how, despite having had her own dealings with breast cancer years ago, would trade places with me in a heartbeat. A mother’s love knows no bounds. She has made sure we have everything to fight this together, that my laundry is done, my prescriptions are filled, my appointments are scheduled, I am hydrated and my house is still standing. And of course my husband who has managed to do it all while still keeping his cool, despite running on minimal sleep.  He is my comfort and the voice of reason and faith. I could not ask for more from him,  selflessly placing me and my children before himself. My in-laws, Nanylil and Ampa, have been with us every step, taking in my five children over April vacation while I was in the hospital, and not just taking them in but taking them to the Mystic Aquarium, the zoo, mini golfing, out for ice team, to the beach, letting the boys create a fort of all forts on the other side of the creek and helping the girls turn the third floor into a fort of their own. They were able to give the children a real vacation and distraction from their mother being in the hospital. They have cooked for us, cleaned our house, vacuumed our car and most importantly babysit during all of those appointments, sometime leaving in the dark hours of the mornings to get here on time and not leaving until after dark the same night. They watch my children on those long chemo days, allowing me peace of mind while I receive my infusions. My brothers, sister-in-laws, and brother in-laws’ care and concern is ever present. Whether dropping off dinners and flowers or keeping my freezer stocked with Cabots ice-cream, texting when they can babysit, offering to pick up the kids up for an outing, or entertaining the kiddos while I take a nap. I am so fortunate to have my family close, united in our faith and in our love for one another.

Over the past two months, I have been blessed with Holy Water showered on me from the most sacred places on earth. I have received prayer cards bearing the Blessed Mother, Mass Cards, Rosary beads from Magigoria, prayers from the Holy Land, bracelets blessed in Mary’s home, St. Christopher the Protector metals, a small statue of Mary herself, along with other religious emblems. All to remind me, as a friend so beautifully put it in her letter and interpretation of a sermon from her pastor in North Carolina, that God is right with me, helping me along in this journey. He does not want me to be ill, or my family to suffer, He does not want bad things to happen on this earth, but despite His dearest intentions, bad things do happen; a bomb explodes near the finish line of the Boston Marathon killing and injuring innocent bystanders, cancer creeps in when you least expect it, but He is there to offer strength and comfort during these most trying times. He offers Jesus' love through all of you, reminding me that there is so much good in the world. Already so much good has come of this diagnosis, I have felt so much warmth and love and it will forever alter the way I carry myself. I have reconnected with old friends and made some new, who have shared their experiences and battles with me. I know I will better cherish my friendships, recognizing the love and support they have given me and the strength I draw from them. I will keep my family, in-laws, Aunts, Uncles and cousins always close to my heart knowing how they have sacrificed for me and been alongside me on every step of this journey. As a mother, I will take time to find the laughter in the chaotic and joy in the mundane.  I will cherish Addison's smooth kissable little face and her chubby little fingers, Cameron's dimpled cheek, cowlick and iridescent knowing eyes, Jameson's casual shrug and constant smile which still reveals several baby teeth, Ella's under-bite from too many years with the pacifier, her strong hug reaching all the way around my neck  and Avery's 
contagious laugh and how she clenches her security blanket while she sleeps . I will volunteer more, and reach out more, instead of asking what I can do, I will just do. I will never hesitate to place a phone call or send an email when I  know someone is suffering, I will go the extra mile, cook that meal, mail that card and say those prayers. I will remember the little moments and cherish the good in each day. I hope to follow through on my dream of working in health care, helping those most vulnerable and working to give back. I will fight to remain positive and will always remember to be grateful for the outpouring of support from so many caring people and they will forever be imprinted in my heart. I will always recognize how fortunate I am to have so many wonderful and generous people in my life, to live in a community where people are so inclined to help one another and to attend a church and school where faith and God’s love are ever present. I have just begun to face the challenges of this diagnosis but knowing I have the love and support of so many makes this much more bearable. I may be low in white blood cell counts now but I feel strong in love and hope and ready to face the challenges ahead.