eating my elephant one bite at a time

OneBiteAtATime.jpgEating My Elephant One Bite At A Time.

I believe that a story is the shortest distance between two people.  While this is my story, truthfully it is not just mine; I did not do any of this alone.  In April 1983, my husband Joe and I were 25 years old and attending to the required pre-marital blood work.  At that time, blood tests were required between two people applying for a marriage license to provide proof that we were not related!  Imagine!  Next thing we knew, we were sitting in a doctor’s office because my blood counts were abnormally low.   They told us there was something wrong but they didn’t know what it was. Referring us to a hematologist/oncologist, we were told I would be dead in six months and we might want to rethink marriage thing!   A month later, as I was walking down that aisle towards the man I had planned on spending my life with, till death us do part took on a new meaning.  We left for our honeymoon with the diagnosis of leukemia.

Returning home, we sought opinions from specialists that did not give us much hope. In September 1983, my sister urged us to go to a research hospital.  Off we went to Hospital of the University of Pennsylvania where the doctors continued to treat the symptoms with steroids and made the unusual decision to avoid blood transfusions as long as possible even with blood counts below functional level because of the risk of infection from HIV (this was the 80s) and possible compromise to a future bone marrow transplant. That decision would play an important part in my future! I spent the next three years feeling like a truck was on top of me every single moment of everyday.

My health took a nosedive in 1986 and we again sought out doctors that might know more about these orphan diseases.  Conceptually I knew that my life had a limit now.  With some nudging from my sister and believing we hadn’t reached answers that we needed, I turned to Good Housekeeping magazine.  Didn’t every woman in the 80s pre-Internet? Their yearly insert of the best physicians in specific disciplines gave us the names of the top hematologists/oncologists at the top hospitals in the country.   With no email at that time, we sent handwritten letters to all twenty-four of them telling them about my case and asking them for help.  Twenty-four replies, in writing, directed us to Duke University Medical Center, which was performing clinical trials with horse bone marrow.  Imagine my husband and I looking at a piece of paper that told us that my only hope might come from a horse!  Talk about a leap of faith!  My parents paid for our flights and off we went to meet the first of many important people in this journey, Dr. Wendell Rosse.  His words at that first encounter have stayed with me for over 30 years.  “You have one thing to do.  And that is hope.  Because hope only goes one way and that way is forward”.

Three years, nine doctors and three hospitals later, it was Dr. Rosse who finally diagnosed me with the very rare aplastic anemia and two months later, the even rarer PNH (Paroxysmal Nocturnal Hemoglobinurea).  In March 1987, after securing the hefty amount of funds required for the down payment for the clinical trial, I began a grueling month-long treatment called ATG. During that time, I was attached to an IV pole that I named Rob LScan 150250001-1owe (hey it was the 80s!).  Serum sickness and paralysis left us with little hope.  In the quiet of the night at Duke University Medical Center, the decision was given to us to have me return home to regain what I had lost and to wait out the results and possibly prepare for my death.  My husband Joe, my ‘secret weapon’, was given instructions from the doctors that I had to be able to sustain myself vertically to ensure I could make the trip home.  I had been hospitalized and in a horizontal position for over 30 days.  To prepare me, Joe, ever the engineer that he is by profession accomplished the task by duck taping my feet onto the top of his feet and walking me around my hospital room for more than 12 hours.  He got me home.  It would be a full year and extensive rehabilitation but my body began to respond.

February 1987

While everyone around me assumed I had beaten the diseases, the truth was that all the doctors would ever say to us was that I could be considered in remission. These diseases don’t come with the word “cure” as a prognosis. At least they didn’t for me. When they told us in 1988 to go enjoy life, they couldn’t tell us if that meant two years (remember the treatment was experimental) or 50 years. So we adopted Dr. Rosse’s word ‘hope’ and we went forward.

While the next 30 years were not uneventful, we did come to a comfortable place that the horses from Kalamazoo Michigan (yep, that was their home!) had done their job.  Elbow surgery and knee replacements from avascular necrosis as well as back surgery were among the hurdles to overcome.

How do we regain trust in our bodies?  I don’t think we do.  I think our new normal is one of caution while trying to keep the fear at bay.  I had to find a place of peace.  I found mine in understanding and acceptance that every living being has two things in common.  We are all born and we will all die.  I cannot change this.  I can change what comes in between the two.

Joe and I moved on with our marriage, our lives and our careers.  Children had been ruled out even before we said, “I do”.   After a failed adoption, we had given up hope that children would be part of our future. Taking pen to paper again, I inquired among the top gynecologists in the country about bone marrow failure diseases and giving birth.  In 1991, with the support of our very talented gynecologist we were blessed with our greatest accomplishment, our daughter Kate.

Having survived aplastic Anemia and PNH, I got a bit cocky.  We had been through the abyss. I figured that since we spent our 20s and 30s in that abyss, we had paid our dues and learned our lessons.   Trust was one of them.  I thought trust meant that it wouldn’t happen again – but I had misunderstood the lesson.  The lesson was that I would learn was to trust that my faith would lead me through whatever became reality for me.

In April 2013, on the return from a business trip for my new job, I noticed a small bruise, the size of a mole, on my arm.   To this day, I don’t know why but I since I hadn’t had a blood test in a few years, I went for one.  The call came on a beautiful sunny spring afternoon.  I was told, “There is a problem. We don’t know yet but it may be back.”  Sitting in the doctor’s office with Joe, 30 years later almost to the exact day, I looked down at our intertwined hands.  The only difference was the age spots on them now.  Two hospitals and three doctors later we are told I have myelodysplastic syndromes (MDS).   The third of the family of bone marrow failure diseases.  Lucky me!  The prognosis was that I had 18 months to live.  Reeling and scattered from the news, my husband sat me down and asked me this simple question.  “How do you eat an elephant’? You eat an elephant one bite at a time.”

                June 4, 1983

storywedding1983photo

                        June 4, 2014

storyanniversaryphoto

I have lived that for every moment of every day for the past two years.  It has kept me moving forward instead of paralyzed with fear.  What do I have to do today?  We needed a plan.  After 30 years, I put in a call to Andrea, a woman I had met through Aplastic Anemia and MDS International Foundation.  She is still living with aplastic anemia and told me about her doctor at Memorial Sloan Kettering in NYC.   Off we went and for the second time in my life, I found the trust and hope in my physician,Dr. Hugo Castro-Malaspina.  We formulated our “plan” which was a preparatory chemotherapy treatment followed by a stem cell transplant.

I was admitted to Memorial Sloan Kettering in NYC on January 14, 2014 to begin a journey that would almost kill me before it would give me a chance at a life that otherwise given the prognosis would have me dying in the fall of 2014.  By the grace of God, the donation of stem cells by my brother Neal, and my family which includes my “secret weapon” Joe, my inspiring daughter Kate, and my sister Beth who guided Joe and I through this journey with love and skill that I cannot begin to summarize. They have tirelessly and selflessly taken care and loved me through this.  And to my brother, for his support and gift of life, which made it possible for me to be alive today and my doctor, Dr. Castro-Malaspina and some incredible PA’s, NA’s and nurses at Memorial Sloan.  The miracle of these people in my life gave me belief when I faltered; hope when I lost my way, strength when I had none of my own left and faith when I lost the connection.  On January 25th we began to hold our breath as they injected my miracle and pray that my body would accept Neal’s donation and the stem cells would engraft.  And thus began the fight of our lives to keep me safe from infection, reverse the damage of the chemo that ravaged my body and destroyed my gastrointestinal system and rebuild my strength through food and exercise.  The loss of 65 lbs as well as my hair, the ability to eat and all of my strength were constant reminders of the toll the bone storytransplantphotomarrow transplant had taken on my body.  5 months later, we returned home to continue the rehabilitation and continue to pray that my body would continue to accept Neal’s cells and begin to produce it’s own healthy ones. Post transplant 1 ½ years finds me with a little more meat on my bones, the ability to walk in the park, eat a meal in a restaurant, shed the mask and gloves I wore for a year and go to Sloan for checkups only once a month.  Every morning before my feet touch the floor I take a few moments to count my blessings and check my meters.  The Perspective Meter is at the top of the list.  No one will ever truly understand what this journey has been like for us or people living with bone marrow failure diseases.

And our village – my mom, my other brother, sister-in-law, brother-in-laws, nieces, nephews, cousins – all who supported and made it possible for my caregivers and donor to concentrate on me. There were friends who shared their homes with Joe and Kate during my hospital stays, and those who would drop everything to come and comfort me when panic set in, listening to impossible rambling and fear, answering the last minute calls to become my caregiver during Joe’s recovery from flu and colds. There were friends who took care of our home from shoveling snow to spring garden clean ups, funny messages, texts, emails, pictures of gatherings and celebrations that took me on wonderful trips into their daily lives, moving me from the hospital to Hope Lodge and visits which fueled my desire to get better.   We felt hugged every single day.  Words do little to convey what the efforts of our village have done for us and the profound difference it has made on our journey with all three of the diseases.

I’m often asked if I’m angry that I got MDS 30 years after my challenge with Aplastic Anemia and PNH.  What would I be angry about? I’ve had more than 30 years with an incredible man and watched my daughter grow up and get ready to embark on her own journey after her college graduation this year. I’ve had a fulfilling 30-plus year career in knowledge management (sharing information and knowledge assets) with good companies, traveled the country and the world, and explored my creative self. I’ve also had the privilege of being with my 89-year-old inspiration, my mom.

storychristmas2014photo

Here are just three of the many lessons I’ve learned from our journey.

Faith –  Faith gives me strength and steers me away from fear.  Bob Marley said it best, “I did not realize how strong I was until it was the only choice I had.”

Hope – More than 30 years later, I lay in yet another hospital bed, the room lit only by the lights of the pumps connecting me to dozens of bags.  I looked up at my “Rosie the Pivoter”, as we called my pole this time.  It was my protection, nutrition and medication during my pre-bone marrow transplant chemotherapy regimen.  There, hanging on the pole, was the bag marked “ATG”.    My world stopped.  This was one of those life-changing moments – thirty years –  all of the trials, research, doctors, nurses, testing, failures which I and those who have gone before their time were part of in some way.  I looked up at my pole and I was alive. That ATG clinical trial was now standard practice for saving lives.

Perspective – At the end of each day, it is about perspective.  While much has been taken from us, that which has been given to us is ten-fold.

 

ellen

Comments are closed