Dear Jack

They all marched into my room wearing white coats. Through their stoic facial expressions, small and seemingly forced smiles emerged. They were my team of doctors. Their mission was to find the mystery of why my “new” bone marrow seem to be failing me. I was not impressed.

I had told myself a long time ago that this was it; it was the beginning of the end for me. I listened as the leader of the team, a stark looking woman, tried to convince me there was hope. Hope. I had heard that word so many times that by then the word made me sick to my stomach. Why should I hope? Hope only made me vulnerable. I chose to not hear them. I was not going to let anyone convince me that everything was okay.

I was dying and nobody wanted to say it. Nobody wanted to open their mouths and just say the word “dying.” I wanted to hear it, so I could prepare. Instead, they came in and told me there was hope. Do you know how much more strength it takes to hope than it takes to just succomb to the obvious conclusion of death? I was tired. I was sick. I wanted nothing to do with hope.

The leader was frustrated and left once she realized her nice pep talk was not working. As she turned to go, I noticed her blonde hair tied tight behind her head in a bun. It reminded me of what my hair used to be like; Only, I never tied mine back so tight. For a moment, I let myself long for my once full head of blonde hair. I wondered if the leader knew how lucky she was. She walked out the door determined to “save” me as the others followed closely behind.

Perhaps letting myself sink into this insane state of mind was my way of escaping the horror of what I knew. I knew two things. I knew I was dying, and I knew I deserved to die.

When you know you are dying, you drift away from the worries of the world. Problems you used to have seem so irrelevant and almost idiotic that you wonder how in the world did you ever let yourself waste so much time obsessing about them.

When you see other people get upset over “non-important” things, you tend to get mad. How can they not know that it isn’t important? The problem is the human condition. We really all know what is important, we just occupy our minds with what is urgent in the moment. It is when the urgency turns to life and death that awareness of the important things become forefront in our minds.

I was, in this moment, trapped in my insanity thinking death was my destiny. I didn’t think I deserved anything other than death. It was the lowest I have ever been in my life. It was a time when I had exhausted my whole existence. I was lost.

Even though I lay in bed at that Chicago hospital preparing myself for my upcoming death, the fact that I had no working immune system and that I was wasting away to nothing was not the urgency of the moment. My urgency was the fact that I was lost, and I had no idea what was going to happen to me the moment I took in my last breath.

Anticipating my upcoming hip replacement has brought me back to a time when I didn’t have the luxury of anticipation. My baby boy was only five months old when I was given the news of the tumor.

Once again, I was in the classroom learning the lesson that life can change in an instant. Only now I was learning that no matter how good life seems, God does not promise that it will stay that way.

Instead of trying to get everything ready like I am doing now in the days before my surgery, I had only hours to prepare. Instead of frantically cleaning and trying to check things off my to do list, I sat on my knees next to Jack’s crib as he lay sleeping.

I was, to some extent, in shock, but I also knew who I needed to go to to find a resolution. So,there I was on my knees rocking back and forth crying out to God. I begged him not to take me from my baby.

I said the same prayer over and over as if repetition would make it easier for Him to hear me. “Please don’t take me from my baby,” I cried out with so much emotion the flood of tears soaked my shirt.

Anticipation is really very deceptive. Whether you are anticipating something wonderful or something not so wonderful, your mind clutters itself with thoughts of doubt, unreasonable conclusions, and irrational scenarios.

Just a day or two earlier, I anticipated Jack’s first steps and weaning him from bottles. I anticipated being his Mom and learning new things only Mom’s know. I anticipated delight and joy as my husband and I marveled at our little miracle and watched him grow.

Yet, now my anticipation held none of those things. I anticipated nothing. I only hoped beyond hope I would live to see him start Kindergarten.

As I said goodbye and left him with my sisters, I knew there was a very good chance he would never know me.

I can’t say I know how I put one foot in front of the other that day as I willingly walked into the hospital. I can only say the steps that led me to that place were the same ones that led me home.

My life was slowly slipping away from me. I even recall writing a letter to God. I still carry the folded up crumpled letter with me. My words were raw, written with a frail and unsteady hand, pouring from the ink that flowed onto the page were pleas to a God who I desperately wanted to hear me.

“I know I am dying. I know you are always with me, but God I don’t understand you. I know you will never forsake me, but God if you feel I should go now, please take me soon because I cannot bear another day.”

When we are young, we think we will live forever. Dying is the furthest thing from our minds, as it should be. What happens when death is knocking at your door, and you can no longer ignore the tapping on your window? What happens when you are no longer able to hide from the real truth, the real reality?

One day during this time, I stepped off the edge into the world of insanity. I was by all definitions experiencing a medically induced mental episode of irrational and sometimes scary behavior. Much of which can be attributed to the heavy doses of medication I was on, but some of it was simply finding a way to survive the terror that raged in my thoughts and the graphic and horrifying pictures I saw in my mind’s eye.

On this particular day I accidentally caught my charm bracelet on something and it broke, leaving the charms scattered. I ran out of the house and down the road, having a panic-like episode. My Grandparents were there, and they tried to calm me. Frightened themselves, they had no success in trying to rationalize my insanity.

I would do things that baffled even my parents, scared my sisters, and had my doctors insisting on my re-admittance into the same hospital that gave me the bone marrow transplant. Once again, we drove to Chicago and once again, I walked across that fourth floor bridge. The first time I walked across it, I had hope and could see ahead of me, past the cancer, and into a life with joy.

Now as I walked, I felt like a monster. I was swollen from the medication, with little hair and wore glasses that magnified the fact that my eye muscles were weak and could no longer hold my pupils straight. The heaviness of the stares landed on me with such force they nearly knocked me over with each passing glance.

At this time in my life, I truly was walking on the edge between life and death. It is a place no one would ever choose to be, but it is also a place that holds truth and perspective. Although in the moment of what was happening, fear and the unknown reared their ugly heads.

As we walked down the corridors of the hospital, we felt like we were walking on a tight rope between sheer exhaustion and defeat, trying not to fall. Truth and perspective always comes later when you are able to see clearly past the immediateness of the situation. I began to remember what happened to me just a few nights earlier.

One night during the turmoil and the crazy episodes that left my family afraid for my mental being and my physical life, I lay awake in bed with my Mom. I never slept; I lay awake nearly all night every night for fear I would die if I succumbed to the exhaustion. As I lay there all of a sudden everything around me became dark, and I started to fall into a black pit. I was just falling freely with my hands and legs swinging about. I didn’t know where the blackness would take me, but I wasn’t afraid.

I remember asking God if this was it. Was I finally dying? Then just as quickly as I began falling, a bright light seem to catch me and I was back in bed with my Mom.

I don’t know if this was a dream or not. It could have been. I was so tired. But, as I walked through the corridors of the hospital, I remembered the episode, and I wanted to think that it was God’s way of showing me he would catch me if I fall.

I didn’t know what the doctors planned to do to me. Honestly, I don’t even think they knew. I was so sick. My new marrow had seemingly stopped working, and I continued to slip into an insane state of being.

I was too tired to run, too tired to care, and my time to let go was growing near.

When you are fighting for your life you don’t think ahead even a minute, you are just trying to survive, to live no matter the cost. You fight with all that you have for one more day, one more hour, and one more memory to experience. So when the smoke had cleared and the battle was over, I had to face the consequences of the fight. I had to accept the changes, and embrace the new me. It was one of the hardest things I have ever had to do. It was the moment I surrendered to the fact that I would never be whole again.

As long as it was covered in bandages, I could pretend it had never happened. I could look past the fact that it was the most excruciating pain I have yet to feel in my entire life. I could hide from the reality of what my battle had cost me. Even though the bandages that were white had become tinged in the hue of blood, they still hid the truth. Even though I had become comfortable living in a state of denial, I knew the doctor would soon unwrap my wound and expose the truth. When that day came, I had to admit I was forever changed, and could no longer look back.

I will never forget it. I remember it like it was yesterday. I was in the hospital and volunteers were handing out balloons to all the pediatric patients. In the fury of all that had been happening, I had forgotten I was still a child, at least against the measures of society. Inside, I had felt at times like I was ninety years old and at other times, a baby. Being sick makes you want your Mom in a way you hadn’t since you were small, and being deathly sick makes you feel tired and old. When they came to my room and saw my injury, they told me of a football player who had the same injury and was the best kicker of all time, or something like that. I had also been on the phone with a reporter, her name was Barbara Walters, not the famous one of course, but a local reporter who had heard of my story and wanted to interview my Mom and me. In the middle of all the commotion, he walked through the door and soon he was standing over me, explaining what he would do next.

With each unwrapping of the gauze, I felt sick and afraid. I didn’t want to see my freshly amputated foot. I didn’t want it to be true, that my toes were no longer there. I had my eyes closed tight as my Mom held my hand by my bedside and encouraged me to open them. Upon the first glance, I felt sadness completely overwhelm me. I knew in my heart how lucky and blessed I was to only have lost half of my foot when I could have lost much more, but the pain of knowing what issues it would cause made me wince and hide my eyes from the reality of my situation.  Never again could I wear sandals or even most shoes. I can walk into a shoe store and not find one single pair I can wear. I could no longer walk on a beach bare foot without the looks. I could no longer go to the pool without feeling anxiety. I could no longer take my shoes off at someone’s house without questions. I know all of those things may seem petty, and they are to some extent. I was only 17, and I had lost a part of myself that I could never regain. It wasn’t just a physical loss, I grieved for all the things it would affect, all the times I longed for my foot to be whole again, and all the things I had not realized yet it would affect, like picking out shoes for my wedding day.

Needless to say, cancer can make you feel hopeless, helpless and like you have no control. Even then, I felt I had no choice but to pick myself up off that bed and keep going. I felt an inherit part of me screaming to the unfairness of life that it was not okay that people like me had to go through such things. I also felt a part of me surrender. I didn’t surrender to the cancer, or even to the situation. I slowly began to surrender to the knowing that no matter what I went through, God was in control and if I believed that then everything else would be okay. I started to walk on that foot, painful as it was, and I began to see that I could still stand tall even as I embraced the truth that I was forever changed.

When someone in your family is deathly sick it sucks out all the air from around you. It isolates you. The illness becomes all consuming, affecting every last member of the family until you all feel like you will just fall apart or stop breathing. Every breath drawn in is a conscience decision to keep it going despite the voice inside your head telling you to just let it go and give up.

At the time, my new bone marrow was failing. I remember it all too well, the hope of a better test result only to be devastated as the nurse revealed a lower level of platelets, red cells and white cells. Every day my Mom and I traveled to the hospital to get a blood test, and every time the nurse drew my blood we’d look at the slide together. She would hold the slide up to the light and see if the color was different. When you have virtually little to no cells that make up your blood, it is not rich in color, it is weak and it is thin. Even though we were always hoping for a better result, and praying for a miracle, every day the result was the same. My new marrow was not making the cells I needed to survive. Worst yet, the doctors could not tell us why. So, hand in hand and side by side, My Mom and I walked into the hospital corridors everyday so I could get transfusions to survive a few more days.

My mother and I were partners. We took each other’s hands and walked right through the battle zones together. Every test, every doctor visit, every chemo treatment, every needle, every time the doctor said the horrifying words of the unknown, we heard them together. We were tattered and torn; her as much as me, maybe more so. I did the best I could, but I was not doing well. Sorrow overtook me, and I was getting tired.

One evening we were all so distraught. I was scared and almost panicky at this point. It had been so long and still my marrow wouldn’t work. I was losing weight, and my mind it seemed. It was a horrifying situation for all of us. Then, the phone rang. Not unusual really, as I heard my sister from the other room pick up the receiver. “Hello,” she said. “Who is this?” she asked in a loud voice and getting louder as she repeated the question, “Who is this?” By now we were all gathered around her to see what was going on. When she finally hung up the phone all she said was that the person on the other end said to not worry; Lisa would be fine. They also said that God was watching over me and we should not worry. The unfamiliar voice on the phone would never say who they were as they just kept insisting that God was in control. We quickly dialed all the numbers to the people we thought may have called us, and no one admitted to calling. The voice on the other end of the phone that night was unrecognizable to my sister.

After that, whenever the phone would ring my heart fluttered with the spirit of hope. As I remembered the anonymous person’s words “God is in control,” I felt a feeling of peace flood over me. I will never know who that person was. It may have just been someone wanting to encourage us; however, what that person said that night in the middle of a hopeless situation was true. Despite the storm that was raging all around us, God was in control. That phone call was a blessing for our family, a flicker of hope in a dark reality. Even still, the dark reality was ever-present as we were realizing this mountain was just another battle in our war, and it was not going to be over until God said it was.

Opening my eyes, I saw my captor standing over me. His hair was light red, and his face was smiling as he looked into my eyes. I could hear myself ask what was happening, but the words never strolled off my lips. He leaned over as if to whisper in my ear as he said, “Would you like me to wash your hair now?” What was going on? I was slowly becoming more aware of my surroundings as I looked around with bright new eyes. In the corner sat a chair with blankets crumpled over the back and a pillow worn and unfluffed lay nearby. I remember thinking what an awful color it was. It was the color of sadness and depression. It was one of those hideous green-blue chairs you commonly see in a hospital room. Breathtakingly familiar.

Although I did not try to move, I knew my body was weak. I couldn’t speak much, and it seemed to me I was still in some kind of nightmare. Apparently, I had asked the person who repeatedly tried to hold me captive to wash my hair. This is when I finally realized who my captor was. The person I ran from over and over again in my dream was actually my nurse. As I drifted off into a coma, his face must have been the last one I saw, therefore making him the villain of my nightmare. I slowly realized that I never knew the trauma and the somber happenings that had occurred while I lay sleeping. I never knew I had been so close to the knocking of death’s door. I  guess I was too busy fighting my captor to realize something was knocking. When I gradually came back to the conscience world around me, I realized I had been in a real-life battle and like all battles, there were scars.

Unbeknownst to me, my life had changed forever over the course of those four weeks. I had become unable to breath without oxygen (even after the breathing machines were weaned off) and unable to walk. My fingers did not have the strength to hold a comb or push the top to the hairspray bottle. My nose, tips of my fingers and my toes all showed signs of dying from the lack of oxygen. Luckily, all of the tissue recovered except part of my foot. The septum in my nose was now gone, changing the appearance of my nose. My lungs had collapsed several times, once it even caused my heart to stop beating. My heart was weak, and I became physically exhausted to sit up in a chair. I was tattered and broken, although there was still hope in my heart. I knew my strength was somewhere because even after all that, I was still breathing. One day as I was being transferred into another room, my nurse commented on how fragile our bodies are and I, without hesitation, said “but our bodies are so strong. Look what they can go through and survive.” The nurse and my Dad just looked at each other, but I knew I should have been dead and I wasn’t.

The harsh reality of my situation was not pretty. It wasn’t a neat happy ending all wrapped up in a bow. It wasn’t a life lesson learned and now move on kind of ordeal. The ramifications of this nightmare would not be over when I opened my eyes. Instead, it lingered in the eyes that saw the wound of an amputated foot for the first time. It lingered in the work it took to come back. It lingered in the changes to my appearance and my soul. It lingers now in the way I see myself and others. It lingers still.

Blurry faces, rushing bodies dressed in white, and men’s voices speaking in panicked tones is all I remember that day as I drifted away from all consciousness. I had gone away from reality, and was drifting into the unknown. I was in a coma. It was never supposed to be this way. We were supposed to hit our one year mark and it would all be better, but it got worse.

What was supposed to be a great time of celebration and relief, turned into another nightmare. As a mom, I can only imagine how my parents felt as they watched me slip away. Not only did I go into a coma state, I was slowly getting worse unable to breath on my own. I was unaware of what others were thinking or feeling as I lay there without knowing the severity of my situation. Deeply into my mind, I dreamed of things as if they were reality. I dreamed I was being held captive and all I had to do to survive was to free myself from my captor to make it back to the place where I would be safe.

What an irony that my dream was a mirror image of what I was actually doing, albeit unaware. I fought my captor in this dream, I escaped him many times only to be trapped over and over by his strength. Although as I dreamed I fought a human enemy, in reality I was fighting the deep valleys of cancer. I was exhausted as I ran out of the trenches only to be knocked back down into the pit of the unknown. I wanted to be free; I remember the feeling even though I lay on my death bed. I can still remember the desire to escape, the anger, the pure angst, and the fight in me to break away. I could almost hear myself yelling, “I am not going to be your victim!”

Even though I was sleeping and in a coma, the deep desire to live was inside of me. I desperately wanted to get back to the other side of me where I could be silly, laugh, and live vibrantly again. I wanted to know what it was like to be me again.

My father prayed by my bed, my mother curled in a ball on the floor as she cried for the inevitable loss, the doctors admit they can do nothing more for me, and I slipped further away. Where was I? Was it even possible to find myself again? Was there another side of me that the imprint of cancer would mercifully leave behind? If I was found, what would I be like? The enemy had ravaged through my body and had no mercy. I lay in such a fragile state that even the machines that helped me breath could no longer sustain me. I was dying.

When I was going through my Bone Marrow Transplant they told me I had to survive one year, and if I did my prognosis would be better. At that time, I wanted time to fly. I wanted it to whirl by me and land on the magical day that would change all the statistics. I never stopped to think how funny that is. That one day on a calendar could possibly mean all my fears would vanish. I would hit that magical mark and somehow everything would be right again. My family and I even celebrated it like a second birthday. In fact, we still do. I have had 21 second birthdays, and I still struggle with fear.

Time is relentless. It never stops. It never speeds up. It never slows down. Our perception of time is what changes. Time was slow when I wanted desperately to be as far away from my diagnosis as quickly as time could fly by, but now I want to be close to the here and now, savoring the moment. Now that I have a six year old son, my perception is that time is going way too fast. I want to stop it and hold it close. I want to savor it, and make it stay in one place for a while, but it won’t. It will keep on going unaware that precious moments are evaporating with the relentless ticking of the clock.

We want to make it do what makes us feel better. We want it to be faster through the trials and slower through the good times. We want it to take us to our destination, but when that destination is not desirable we want to make it stop. I think time is like God and His plan for our lives, we know He is there, He never changes, and He will always have His will. Even if it means feeling better or not.

As time slowly went by and I finally hit that first “magical” birthday, I became even more sick. Statistics really don’t mean anything for the individual. Everyone is different. Just like all the snowflakes that fall to the ground, we can say statistically they will all end up melting, but what about the ones that get eaten by eager and curious children? I know my son has eaten quite a few.

Hearing the doctor say the word “cancer” is a life-changing experience. It is a moment when all of your past thoughts, hopes, dreams, and visions become blurry and clouded with doubt, fear and pain. When I was seventeen and first heard the word, I wanted to run. I wanted to run to a far away place where I could pretend it had never been spoken. I wanted to go back, back to the moments before the doctor had opened his mouth, and find a way to keep it from happening. I wanted to be free again. Like the dark that comes in the evening, the word had covered me with its blackness, and I was caught in the blindness of the unknown.