For most, New Year’s Eve brings to mind champagne toasts, midnight kisses and hopes for the future. But New Year’s Eve has a different meaning for me. In the final hours of 2009, I got a call from my doctor. There was a problem with my bloodwork, I needed to be admitted to the hospital immediately. A bone marrow biopsy was mentioned.
My husband, James, and I gripped hands tightly as we crossed the threshold of the hospital unit we were directed to under the sign reading “Hematology/Oncology.” There were blood transfusions and more tests. When I exited an X-ray room at midnight James glanced at his watch and said, “Happy New Year.”
Ten years ago, I was 33, a middle school teacher and a Coast Guard veteran. My husband and I had just bought a house, only a mile and a half from the family farm I grew up on in Randolph Center. We were ready to start a family.
But a few hours into the new decade, a doctor stood beside my bed, young interns forming a horseshoe around him. I took in the faces of the interns and residents at the foot of my bed, and they looked like they were trying not to cry. I thought about telling them they needed to work on their poker faces.
When the doctor told me it was possible I had leukemia, I asked him what else it could be if it wasn’t leukemia. He looked uncomfortable and tripped over his words a bit, so I had my answer.
The first and most devastating certainty of my diagnosis of acute myelogenous leukemia was that the only treatment that could save my life would take away my ability to bear children. James and I held each other and sobbed.
After all my years of healthy living, we watched as nurses clad in protective gear sent chemicals in bags with hazmat symbols into my veins. The initial course of chemotherapy required a triple cocktail of toxicity 24 hours a day, over seven days. I went into heart failure and things faded to black; I was conscious, but have no memory of several weeks that followed.
When I regained my awareness of the world, I had lost most of my vision in one eye and part of the vision in the other due to a retinal bleed from vomiting so hard. I had to work with a physical therapist to walk again; I used a walker, trailing an IV pole. I had dozens of transfusions to replenish my red blood cells and platelets. I was unable to do almost anything for myself. Eating and drinking were often impossible. I’d put all of my effort into taking a few bites of nourishment only to have my body reject it, all my work lost.
James was always beside me, holding my hand and encouraging me. He was advocating for me, and he was taking notes and taking pictures, just as he does for the Valley News.
It was all so unfair to him. A few years into our marriage and I was capitalizing on “in sickness and in health.” He would trudge from work to the hospital and home to do piles of laundry so I never had to wear those embarrassing hospital gowns. He kept track of symptoms and side effects. He researched clinical trials, paid bills, signed me up for long-term disability, for Medicare and Social Security. He fought insurance companies. He updated friends and family.
Every night for my first six weeks in the hospital, a friend or family member stayed in my room with me. Hundreds of cards, letters and packages from friends, family and students arrived at the hospital and at our home. I was unable to receive fresh flowers because of my compromised immune system, so students made flowers from duct tape or tissue paper. One student sent me a Care Bear from her childhood. Another student wrote a card that said, “You Are Not Invisible,” a reference to a sign from my classroom with a double meaning, and something I’d say to him when I’d caught him misbehaving and he would widen his eyes and put up his hands in innocence.
After six weeks of having my vitals taken every four hours, it was terrifying to be home on our own. I still had few white blood cells and a minor cold or infection could have been deadly for me. When I was discharged, the doctors said to walk, a mile a day. That was the best thing I could do to regain my strength for the next round of treatment, so I walked. All bundled up and never alone, I walked.
At home, my wheels started to turn. I had decided not to Google my diagnosis, but I knew it was bad, I knew from the way doctors and nurses looked at me, from the way they would talk and the way my friends acted. I called my hematologist and told him I wanted to talk about what we hadn’t been talking about. He paused for a long time and asked me if I was sure that was a good idea, if I was sure I wanted to know.
Yes, I wanted to know, and yes, I confessed I had Googled, but I wanted to hear it from him. He later told me that most people don’t want to know the odds they are up against. It took me a few days to work up the gumption to tell James what I found out. I eventually called my siblings and sat down with my father. My siblings talked to each other and said that they felt they had no choice but to decide I was going to live, that if anyone could it would be me. I said I felt that James and I had no choice but to consider I might not.
The social studies teacher in me thought about how the average life expectancy for a woman in Swaziland was 34 and maybe I had had a good run. I wondered how much this was costing, how was it that all of this money, technology and resources were going toward trying to save just one person? How many children in a developing nation could have been vaccinated for the same dollar figure?
I have never been part of an organized religion, but I thought about how if there was a God, it would be unwise for Him or Her to let me die, only I thought about it and expressed it to James in words more befitting the sailor I once was. I had so much to offer, there was so much good I felt I had yet to do. I just couldn’t die. If I lived, I considered what my future held. Maybe it would be selfish of me to ever work with youth again even if I could. I considered distancing myself from my young nieces and nephews, because I was a time bomb, and maybe it would be easier for them if I was farther away when I went off.
Though it would be hard to prove to the government, I came to realize that my leukemia was likely service-related. I had been a diesel mechanic in the Coast Guard, exposed to jet fuel and fumes and had my ungloved hands covered in benzene over the years. I went to fill out paperwork at the VA to file a claim for disability, mostly so I could be counted as having been negatively impacted by lax rules and regulations, but I was so overwhelmed I couldn’t follow through.
I became the poster child for stem cell transplants at Dartmouth-Hitchcock Medical Center, I allowed my story to be followed and videoed to educate potential transplant patients and their families. I started sporting a pink wig; I was tired of getting downturned smiles and pitying looks and of scaring little kids when they saw a gaunt, pale, bald figure trailing an IV pole. Instead of shying away from me and clinging to their moms when they saw me, little girls would ask their moms if I was a princess as they passed me. A lady asked me one day if the pink hair was for a cause, and I said, “Yeah, it’s ’cause I have cancer.”
Eventually, I received a transplant of my own stem cells and had a year of follow up chemo as part of a clinical trial. I kept walking, kept trying to put one foot in front of the other. More than two years after my first diagnosis, my leukemia returned. I needed an outside donor and none of my siblings was a good match. More than 900 people registered to be stem cell donors at donor drives held at the red school house in Randolph Center and in James’ hometown in Ohio; I knew though that this was for the greater good, and not necessarily for me.
I lived in limbo, not knowing if an optimal donor would be found, and I contemplated what my quality of life would be if I chose to go with a non-ideal match knowing the potential for severe and lasting side effects. Maybe this was my time. Maybe it would be easier on everyone if I let go. I talked to my favorite hematologist and said I wasn’t sure if I wanted to go through with another transplant. He said there were promising drugs in the pipeline that maybe I could be part of a clinical trial.
I had filled out my advance directive, stating I had wanted my hospice care to take place in the back room at the farm I grew up on. I had made out my will and later on I made my funeral arrangements, meeting with the funeral director who had worked with us after my Mom’s death just a few years before my first diagnosis. I worked with the owner of a local event company whom I used to work for and we picked out a level spot in the farm’s lower hayfield where a tent could be set up.
In the summer of 2012, I received a cord blood transplant at Massachusetts General Hospital as part of another clinical trial. My bone marrow would become ground zero and the stem cells extracted from two sets of donated cord blood, one from Europe, would be introduced into my marrow to hopefully take hold and grow a new immune system. James and I had read through stacks of paperwork that outlined significant chances of death and horrible side effects and I signed page after page agreeing to the procedures. We clung to each other and sobbed.
I left for Boston knowing it was likely I wouldn’t be coming back. I contemplated saying my goodbyes. I spent the entire month of August in the hospital 10 floors up. I had full body radiation and yet again endured weeks, months and years of treatment, side effects and recovery. There were innumerable setbacks, midnight trips to the emergency room, stays in the ICU, infections, months of IV nutrition and participation in more clinical trials.
Eventually, one of the sets of cord blood took root in my bones. Akin to something in a science fiction movie or a crime drama, I’m a chimera; I have two sets of DNA, the one I was born with and the one in my blood and saliva.
I started a support group for young survivors at the hospital. We swapped stories and said things to each other that our loved ones didn’t want to hear. A few times we ended up doing a morbid comparison regarding numbers of bone marrow biopsies, radiation exposure and days in the hospital. I always won in bone marrow biopsies, having had 19 of them, and my mention of having had 8 or 10 central lines, a substantial IV with a direct path to the heart, would usually earn a sober look. I made friends and connections and not all of those friends made it. Each time another friend or acquaintance passed, it sent me for a loop; I could be next, that could be me. I was waiting for the other shoe to drop.
There were years of uncertainty, not knowing if I would live another six weeks, six months or six years. Not knowing if it would be my last Tunbridge Fair, my last Christmas or the last time I would see my cousin from the West Coast. It took me years to feel like I had rid myself of the post-treatment fog called chemo brain, years to build up my stamina, to gain muscle mass and to strengthen my bones. It took me years to get back to work and I wondered who would hire me with such a gap on my resume, I wondered if I could contribute to society again. I contemplated getting a dog, but statistically speaking the dog would likely outlive me, so I spent a long time making sure that James would be OK with it. I decided that if my time on earth was limited, I wanted to do whatever I wanted to do; I wanted to help kids and to take my dog to work with me.
I work with youth again now, putting the tenacity and determination I once put into my own survival into fighting for their futures. Occasionally a student will ask me why I don’t have my own kids and I say I wouldn’t have as much energy, love and attention for them if I had my own. Sometimes they say, well, it’s like you do have kids, a whole lot of kids actually.
Most days I still walk, usually after school with the dog who comes to work with me. I use the walks as a time to try to process all that I have heard and dealt with that day, trying to rid myself of the emotional toxicity so I can keep showing up and showing heart. I try to take good care of myself in order to keep living and to keep doing this work, which takes its toll. I wouldn’t want to be doing anything else, though.
James and I live on the family farm now and I can look out one window to the field where I planned for my funeral and out another to the graveyard where my mother is buried and I will be someday. Hopefully that won’t happen for a long time, but if it does I’ve spent the years since the onset of my illness as wisely as I could have.
This New Year’s the same friends and family who spent the night with me in the hospital and the nieces and nephews who played with the buttons on my hospital bed and helped shave my head all those years ago gathered to celebrate the dawning of a new decade, one in which I’ll keep putting one foot in front of the other and keep helping children.
Amelia P. Lincoln works as a student assistance professional in Central Vermont with her dog True and is pursuing a graduate degree in clinical mental health counseling. She can be reached at aplincoln10@gmail.com.