I don't want anything to take me away from you. Though I felt a sharp pain when Aaron said this, I smiled slowly, carefully.
"Our life together is guaranteed,"I replied. The words came from someplace certain in me, a small place, one in need of constant cultivation, but one that I honor nonetheless.
"Guaranteed," I repeated to overpower his fear. "Tonight we celebrate." I scanned our many photographs, the years linking us since our teens displayed across our walls, and kissed him with determination to remind him of what we had right then. I could feel his heart beating wildly as I leaned against him and showed him that I had no doubts about us. I moved his hand from his neck and onto my own.
For months I'd wanted to command him to stop scrutinizing that lymph node on his neck. When he wouldn't, I pretended it did not exist. I wouldn't even look at it even though he asked for constant examination. It was as if there was a magnet inside that node and his hand was unable to resist the pull. Within minutes of running his fingers along my collarbone, his hand moved from me and back to the node. My mind immediately connected to the things that had no business being resurrected. Not then. I had promised myself I was done looking for fortunes, free of trying to predict what would happen in this year or that year. We'd escaped the tragedy of my having the defective Huntington's gene so weren't we now in the clear? Smooth sailing. Blue skies. Only good news going forward. Isn't this how it was going to work? Why would each of us face a life threatening illness so early in life? What would be the likelihood that I had no biological family and the man I'd chosen to spend my life with would leave me because of illness? Impossible.
"This is a fresh new year and we are on the verge of the life we've always wanted--the end of your training, the beginning of our family. The only thing I'm worried about is how many nights I'm going to wait up until midnight for you to come home this week."
He mumbled something and drew me close. I turned on the television. As we watched the ball drop that New Year's Eve., I did not wish for Aaron to be free of disease. I wished only for our continued happiness. I will never forget a minute of sitting there so ignorant of how my life would soon change.
A few days later we drove to Massachusetts General Hospital for Aaron to undergo his lymph node biopsy. With normal blood work and chest films, our internist did not feel the biopsy was essential, but Aaron did. I put this down to his profession which required him to excise anything suspicious and examine it under a microscope. Aaron didn't speak throughout the drive. I continued to touch him with my eyes and hands, trying to bring him back to that cold gloomy morning, the two of us shivering side by side, but he drove with intense focus as if toward a destiny more than a destination.
When he was taken back for the procedure, I sat in the cafeteria writing belated New Year's cards. I pressed pen to paper, and made naive pronouncements about the upcoming year. Naturally Aaron refused general anesthesia. He wanted to be awake. In some part of his mind, he clearly believed he would shuttle the node to the department, gross it in and perform the frozen section himself. I found him waiting for me in recovery, groggy, eyes glassy, but still determined that he should head up to his office. The sight of the bands around his wrist drew my attention; I was unable to look away. He was talking now rather quickly. Most of it made no sense to me at all. He seemed more stubborn than usual and for a minute, I believed that he would insist, that I would have no choice in the matter, but as I moved in closer to him and breathed in the hospital smell that already clung to him, I realized he was sleepy enough not to fight me. As we exited the room, I looked behind us to see if anything was left behind.
"What are you looking for?" he asked.
"I don't know." And I didn't. I just sensed that something was lost to us.
Once home, I tried to enjoy the wonderful treat of having him home in the middle of the day for the first time in many months. We huddled together on the couch, staring out the windows at the snow and wind, with our unusually subdued dogs, until the day quickly turned to darkness. "I hope I am okay," he said a few times while I lay in his arms merely watching his face which did not relax. I had the ability to read him and I knew that he was worried, frightened even, and the knowledge made me turn from any further analysis. Would he want popcorn? A movie? A walk in the snow? A nap? No. He was waiting desperately for the phone to ring. His privilege as a resident in pathology was that we would hear soon, by the end of the day. When the phone finally did ring, and Aaron took it from me, I noticed a tremble in his hands. It was then that my panic came out of the shadows.
"Are you okay? Are you okay?" I badgered him as he listened. He nodded his head, said thank you, then hung up.
"They say it's reactive."
He nodded again. With this, I embraced him fully.
"Now off to bed," I ordered and led him upstairs.
The spell cast over these hours lingers in my mind, even now looking back, knowing what I know--that these were the last moments where worries felt like an extravagance. As we lay beside one another in bed, the dogs wedged in on either side, I noticed how beautiful it was in our room at winter's dusk with snow illuminated by the street lights. Everything was still and calm; the danger had passed for me. I sighed and curled up with Aaron in this honeymoon. But soon I realized that Aaron had not fallen asleep as soon as his head hit the pillow. He was drifting in and out but not truly asleep. I began to wonder why he wasn't letting go but before I had a chance to ask, the phone rang. It was an assault to our peace like a fire engine in the middle of the night. The sound had the same effect on me: someone somewhere was in trouble. I didn't realize at the time that it was us.
Another ring but I planned to ignore it--why would I want to disrupt this time together-- but Aaron insisted I get it.
"It's JP again," I said as I handed him the phone.
Aaron's face took on the pained expression he'd worn throughout the day. He sat up in bed. Though I swore that I was no longer worried, I was quickly hysterical as if I had always known it would come to this.
"What's wrong? Is it cancer?"
Aaron nodded. I didn't believe what was happening.
He tried to gesture for me to calm down but how could I calm down? I met his gaze and the reality swallowed me whole. I closed my eyes and turned from him. Cancer. The worst case scenario confirmed. With Aaron's stepmother and two dogs taken recently from this disease, the pressure that comes with experience built in me immediately.
When Aaron finally spoke, his voice sounded far away. "It's not Hodgkin's. It's CLL."
I opened my eyes. Aaron looked surprised but calm.
"How strange," he said.
I didn't have the questions to ask then so I sat there with him digesting the news. He held me still with his hands, and I allowed my eyes to close again. I soon felt him slip out of bed past me.
I did not feel the stairs beneath my feet as I followed him to our office. He sat on the floor with a large file box and began sorting through papers. All of the color had left his face. While he read, he looked up at me standing at the top of stairs, and tried to smile. In turn, I tried to calm down watching him. Nothing has changed, I assured myself. We were still in our house, snow was falling. The silhouette of a tree in our window dominated the wall. I traced the branches with my eyes, my head swaying along. I lost myself in this motion, while Aaron began to talk.
"I just did a presentation on this disease."
I had lost the ability to speak and didn't even nod. My head continued to loop up and down and around the shape of the branches on our wall. My future was bound to his; we could not be separated without killing me.
He outlined the details of this CLL as if it was all predictable, knowable. He held up articles, pointed, explained, one paper than another. In the beginning all I heard was cancer, cancer, cancer. He was trying to tell me what I wanted to hear, just the parts that pointed toward survival, toward the life that we had planned, not the roller coaster we were about to board. I'd spent my whole life amongst sick and dying family. I don't want that ride ever again, I nearly said aloud. I was ashamed not to have been this terrified all along. Look how this has caught me, I chastised myself. I began to shake.
Aaron described mutation status, cytogenetic abnormalities, other markers, but I became deaf to all of these details. I crouched beside my scientist as he flipped through the pages, sorting, organizing, his mind passionate and ready. "There is a difference between acute and chronic lymphoma's," he said. "CLL is chronic. Chronic Lymphocytic Leukemia. It's usually a disease of the elderly, but not always."
I know that he spoke continuously as I drew him to me hungrily. We sat together on the floor, bleary eyed from many hours of discussion.
It was late when Aaron made dinner. I don't remember what it was but I know that I didn't eat it. I also don't remember crying but I'm certain that there must have been a heavy flow. Aaron seemed to sleep that night in the way he couldn't during the day. Something about the certainty had given him the compass that he needed. I could not sleep. The ferocity of my insomnia is huge even on normal nights, but on this night, with every bad thing in my life revived many times its original weight, I was afraid to sleep. I drew a bath and climbed in with a book. My strength deteriorated in the water. I imagined I would soon dissolve like the bath salts and be pulled down the drain. The idea appealed to me. I wasn't ready for another fight.
"Come to bed." I turned to find him in the doorway. "I want you beside me."
I didn't want to get into the bed, but I did, just to be near him for a few minutes before he returned to the hospital where he spent most of his hours. I felt him watching me as I rested my head on the pillow. Laying there with him, his illness became palpable, it had a presence, a place in our lives, was already something familiar to me. The stress of the day was threaded through every inhale and exhale. How could this be happening? I did not take our life for granted. I did not need this threat to appreciate what I had. I thought of pain and wasting and Aaron's disappearance from my life. I don't know how or when but I fell asleep. When I awoke, he was already gone. The dreams took many days to fade.
Aaron returned to work as if nothing had happened and left me to my imagination. I wandered around the house doing the same thing many times over. I knew that I must work and I did, though I can't recall the hours. I pitied myself. I raged. I struggled against my grandmother's voice in my mind. She reminded me that my presence brings on ailment. Even though I realized years ago that none of it was the truth, the boundaries between past and present eased, and suddenly the worst of it was mine again. I waited for Aaron to call me. He needed to see the biopsy for himself to confirm the results.
"Could this be a mistake?" I'd asked him.
He didn't think so. "These people are the best at what they do and this is a straightforward diagnosis."
Still I wondered if perhaps this was all a nightmare from which I'd soon wake.
Though I was used to dining alone, spending my nights alone, that this night was similar to all others, nothing felt the same. Everything seemed more dangerous to me. I couldn't let the dogs out into the yard because I didn't know what was waiting. All of the doors must stay locked. I waited for him like a child by the door. I lived as if under siege until his arrival.
He came home as if the world was not different. The dogs barked. I unlocked the door and rushed into his arms where I began to cry. I'd been waiting to do that all day.
"Don't worry," he hushed me. He wrapped me up tight but I felt barely touched; I was somewhere else entirely.
"Tell me you are not going to die from this."
"I won't," he promised.
He led me up to the bedroom and lowered me onto the bed. But I didn't want to sleep. He reassured me many times and I wanted to believe him but the words felt flimsy in the darkness. I touched every part of him: ran my hands over his flesh to remind me that he was still with me, the man that I married, the man with cancer. I inspected him as he undressed looking for something, a sign, a mark, but everything was recognizable, what I had known, but as my eyes glimpsed the bandage, I remembered that there was something inside him that could sink us. I held him so close that he could not sleep. I willed the cancer to pass through him into me. I could handle the cancer myself, but not watching him suffer.
The next day I began my research into this disease that many patients called the dragon. I insisted on knowing everything, every opinion, case study, research trial. In the beginning Aaron needed to translate the language but soon I was versed in the mechanisms of this disease. I knew that I must be able to keep up with Aaron's mind, even surpass him, so that I could be his eyes and ears and mind while he managed his work at the hospital. Each night, I accosted him when he returned home, explaining what I'd learned, gaining mastery, finding my way through the statistics. CLL had imprisoned me. There was little room for anything else in my mind; I was devoted fully to learning what would make a difference.
The appointments started the next week. The first doctor we met with, the one who stumbled through the research, told me that none of it mattered, that Aaron would not likely live to see our children grow up, so I shouldn't have any, at least not with him. I sat there with a notebook on my lap, writing down every word that was thrown at me, even these ugly ones that I didn't want to hear. Even with an indolent disease, he explained, CLL was incurable short of a bone marrow transplant and that was a rough road. I hated this doctor instantly for denying me our life and for the way that he spoke to me as if I had not come to some of these concerns on my own. A bone marrow transplant. I knew little about this procedure and from his tone it sounded like I shouldn't hope for Aaron to need one, and yet I clung to the word of greatest importance: cure.
Those were challenging weeks as we waited for answers. Was Aaron's CLL a more favorable or more aggressive variant? Did he have the desired mutation status with the right location and percentage? Everything seemed to hinge on these results. CLL behaved quite differently depending on the type. Some people never required chemotherapy, their disease slowly smoldering with minimal impact on their lives. For others their disease progressed but was managed like a chronic condition. Still others saw a more aggressive and immediate course with a need for chemotherapy and a potential bone marrow transplant, more similar to the acute leukemia's.
My mind wrestled with these categories as I continued my studies. Because what other remedy was there to pass this time than to stay true to my endeavors? I would somehow be the one to find the answers we so desperately sought. It was on me to make this right. To say that these weeks seemed like an eternity sounds cliche, but I truly felt it. I wanted to escape so badly from this situation but could not budge. This was a gap in time, filled with little sleep, little food, and fast breathing. I never seemed to be able to catch my breath. I don't know even what I looked like: exhausted, defeated, shrinking, unlike myself. I wanted to be done with this obsession but I lived surrounded with these papers at all times, believing that they held some truth if I could only manage to see it. It was all I could think of as I rummaged through the words, circling the same things repeatedly. I read each article a thousand times, wrote down Aaron's results and tried to match him into something I could control. Was this a death sentence or an inconvenience? The truth was that I wanted neither but clearly one was more desirable.
By the time of our appointment with the specialist at Dana Farber, the answers were ours.
"Aaron has a more indolent variety. I don't think he will need treatment for some time. And if he does, we're going to test his siblings for a bone marrow match. Aaron is one of four. Excellent. It's good his mom liked children."
Hearing those words, I breathed more deeply than I had since we learned of the diagnosis. I had questions, so many questions, and he indulged my every one. Anything I had to say met with his attention.
Finally he said to me, "You can trust me. I will tell you when it's time to worry."
I looked at him expectantly. "It isn't time to worry. You'll come here every few months for monitoring, but otherwise everything looks great."
"And that's it?" I asked.
We soon learned that both Elana and Sarah were perfect matches for a transplant and while neither of us welcomed the idea, we were told that that this disease could be cured and that we should not discount the option. But we didn't need to concern ourselves just yet.
Because CLL is not considered curable with chemotherapy and because it generally moves slowly, patients aren't treated until they actually need treatment. Finding the disease does not indicate a need for intervention. It was a hard thing to get used to.
I'd been crawling further into this darkness day by day. How was I going to just turn around and head toward the light? Though I didn't alter my research endeavors immediately with the doctor's pronouncement, eventually I packed up all of the articles I'd acquired over the months and tried to begin our life anew.
I turned my attention toward alternative healing modalities that might prevent any progression in Aaron's cancer. I trained, accumulated knowledge and certificates, to assure myself of a healthy future. But none of this completely brought me back the place from which we started. I still felt like I was living on borrowed time.
How do you begin again as if this hadn't happened? How do you simply release this disease and move on, this thing that had exerted such a claim on us both from its first acknowledged moments? I was addicted to worrying about it but now I needed to dismantle those concerns and return to our life. The diagnosis faded bit by bit over the next year, and I pushed the fears slowly out of my mind. Not all the way, but just enough. And there they remained until Aaron's disease made its presence known three years later.
Last night while we lay in bed, Aaron shared that he didn't remember telling me after that first call that everything was okay. He said he always knew it was preliminary.
I gnawed on that word as I listened to Aaron cough and stir, rising from the bed many times throughout the night. There were so many moments that unfolded from diagnosis to this day and yet we are still in preliminary days--the days leading up to the main event. What we do know right now is that according to Aaron's latest CT scans, the new treatment is working. Aaron's lymph nodes are significantly smaller, and so he is on track with where he needs to be. The transplant will definitely take place in early July and he will be going into the procedure with minimal disease which is the scenario we'd hoped for.
Of course, this is all preliminary, but I believe we've been led to this place so that we can have our cure and finally put this disease behind us.