Before you begin to read my post below, please understand I am not saying the journey I took was unendurable. I realize what I went through is not as hard or as traumatic as cancer or any other serious disease. I am simply explaining some of the experiences I had, how they changed who I am, hopefully helped me to become a better person.
I have tried once before to compose a blog on my inner transformation, my survival of the year from hell but with no success. As I sit here in the cafeteria at Maryland General waiting for my father to finish his chemo, the hospital sounds begin to surround me, remind me of my own hospital stay. The sounds like a soft whisper in my ear, remind me of the fear I once felt. I begin to wonder if the reason I have been unhappy with what I had previously written is because I wrote clinically what was happened to me, the cat scans, heart monitors, Ivs and constant blood work and not focusing on the fear and uncertainty I faced, more importantly felt.
At any age, hospitals can be extremely scary, especially when brought in to an emergency room under lights and sirens. Most of my memories from the first night are the paramedics, doctors, nurses all yelling the same sentence over and over, “Denise stay with us”. Today I am well aware I was dying that night, I should be dead, I was simply too stubborn to let go. I am what my doctors call, a living, breathing, walking miracle. Miracles aren’t easy, they aren’t free and they can take a toll on you. But if you let them, they take you on a journey of self discovery and self improvement.
Massive bi-lateral pulmonary embolus. A medical diagnosis I had never heard before August 28, 2003. Yet that night , the diagnosis would change my world, change who I was, who I am now. As it was later explained to me, I had a large blood clot that had broken loose from where it had been growing for several weeks (most likely my leg). The blood clot traveled from my veins through my heart, until it rested for a while straddling both my lungs in my pulmonary artery. After it sat there for several hours, the pressure from the blood flow caused it to break apart into hundreds of smaller clots filling both lungs. My cat scans would reveal that 53% of my right lung and 48% of my left lung were covered in clots restricting the amount of oxygen getting to the rest of my body. Most people die from one clot, yet there I was still alive with over half my lungs littered with clots, limiting my lung function. The doctors would later tell me they were surprised I even survived the clot passing through my heart. The estimated size of the clot should have stopped my heart, or caused a massive heart attack. Yet all I can remember is a bad burning sensation in my chest earlier that morning. Chalk my survival up to the fact I was in great shape physically so my heart was able to push the clot through. My lungs were in pristine shape, I had never smoked, never did drugs, allowing them to withstand the onslaught of the numerous clots. Maybe my being "good" all my life was leading up to this night. No one is quite sure how or why I survived, some people call it God’s will, others a miracle.
There is nothing as surreal as a doctor explaining to you there is a good chance you will die. The E.R. doctor's biggest fear, at any moment one of the many clots in my lungs would break free, travel to my brain, cause a stroke and most likely instant death. My own mortality was brought front and center, my greatest fear exposed. I was only 40, death was not suppose to be here so soon. After I heard the words 50 percent chance of survival through the night, my mind wondered back to the events earlier in the day. Our family had dropped Kathryn off for her first day of college earlier in the morning. I questioned myself. Did I tell Kathryn I loved her, I was proud of her? My mind was replaying our goodbye at Frostburg, praying it was not going to be the last time I would hug my daughter. As I listened to all the blurbs and beeps of the machines attached to me, I made up my mind, I didn't care what the doctor's said, that was not going to be our final goodbye.
The first morning after I had been admitted to the hospital my new pulmonologist greeted me with, “I am not sure who your guardian angel is, but I could sure use them on my team." Dr. Davidson made me smile, he had a sense of humor. I knew I was going to like him. He would be responsible for my recovery, the man in charge of getting my lungs back to normal or as close to normal as possible. While all the other doctors were giving me a 50 to 70 percent chance of surviving. He reassured me by saying I had survived the night before, he was pretty sure I could handle anything from then on. He promised I was going to live to be old and gray, he would be my doctor for a very long time. Those were the words I needed to hear, nothing negative, he had faith I could handle it. Sometimes what the soul needs to hear is more important then the reality the brain is trying to comprehend. I smiled at Dr. Davidson and announced, I agreed, I was too stubborn to go anywhere. Over the past six and half years, Dr. Davidson has come to laugh and accept my stubborn side, the don’t tell me I can’t do it side.(He knows I will anyway!)
I am not ashamed to admit while at the hospital I was afraid to fall asleep. Afraid a clot would break free from my lungs and I would never wake up. My fear of death had come to confront me head on. I had to learn to accept it's eventuality or continue to be afraid and deny it's existence. It would be many weeks before I would finally be able to sleep on my own. Until then the songs of Bruce Springsteen, Kenny Chesney and Tim McGraw would lull me into my dreams. Their music would help me forget my weekly blood tests, constant lung infections, blood thinners, and the many medications that were keeping me alive. In my dreams I was normal again. Some dreams were from long ago, others I was running on the beach enjoying the sun and waves not worried about dying.
Before I could leave the hospital I had to be schooled on the dos and don’ts for the next year, possibly the rest of my life. The traditional treatment for a pulmonary embolus (1 blood clot) is six months on a anticoagulant, a blood thinner. With a massive bi-lateral pulmonary embolus my course of treatment was Coumadin for minimum one year, possibly forever. Blood test, PT/INR, had to be drawn once a week to check my clotting levels. It can never be overstated how much I hate needles. The thought of constantly having blood drawn was nauseating. Coumadin for those who don’t know, was originally developed for use as a rat poison. Later it was found that Coumadin blocked the formation of the clotting factors in the liver, thinning the blood and preventing any future blood clots. Because of this, while on Coumadin there are many dietary and physical restrictions. The dietary restrictions although at times were a pain, did not have the same impact as the physical restrictions on my life. When a person's blood is thin, your gums bleed, you bruise easily, if you get cut or injured the bleeding is harder to control and/or stop. Any activity that had a risk of physical contact or injury was deemed unsafe and not allowed. A slight hit to the abdomen or head could cause internal bleeding. A person theoretically could begin to bleed to death before ever realizing what was happening. As the doctor was reviewing the list, my new reality was beginning to sink in. My primary job/paycheck, gymnastics instructor-gone not allowed, my volunteer work as a cheerleading coach-gone not allowed, both of these carried a high risk of injury. No more teaching, no more coaching, Kathryn was now away at college. Everything that characterized who I thought I was, Mom, instructor and coach were all now absent from my daily life. For the next several months I would find myself in and out of depression as I tried to find a new career to pay my daughter's college tuition. I struggled for months to redefine who I was from who I had been in the past.
One of the hardest adjustments I had to make was dealing with the physical restrictions my doctors had given me. Even worse, the restrictions my body placed on me. The first nine months of my recovery I was constantly battling lung/respiratory infections. Before my blood clots my daily routine included running 3 miles a day in the morning, at night I would walk 2 miles. It would be months before I would be able to simply walk a single flight of stairs without being out of breath. It may sound strange but I had forgotten what it felt like to breathe normally. A natural instinct was at times very foreign to me. I developed asthma in November. I was never more aware of the constant battle my lungs were fighting on a daily basis then the day of my first asthma attack. For a few nights prior I would wake up in the middle of the night coughing for several minutes before I could fall back to sleep. I thought I was getting yet another lung infection. Later I would learn that is a sign of asthma. I was in the kitchen making myself breakfast when I had the strange realization, I had to think about breathing. I was telling myself to breathe in, breathe out. I felt like I had a six hundred pound man sitting on my chest. I looked at my hands, I noticed they had a slight blue tint to them. I became very cognizant of the fact I was suffocating from the inside. No matter how much I tried to breathe in, my lungs would not let me. The strange wheeze my lungs made scared me. I said a silent prayer as I reached for the phone. Then as soon as the tightness began to feel like it was closing off my airway I began to cough and the pressure on my lungs lessened. I slowly felt the air return back in my lungs. After my breathing returned to normal. Reality once again struck me, I sat on the floor and cried. I wondered once again if death was only one breath away.
I have always loved to sing. I sing in the shower, with my iPod in the car. I have even been known to sing when I am cleaning around the house. Granted I would never win American Idol but I can carry a tune. For a time the simple joy I loved, left me. When your body no longer allows you to do the simple things you love, frustration becomes a part of your daily life. My lungs were no longer strong enough to hold a note. I was heart broken when Christmas 2003 I could not even sing the opening line of my favorite Christmas carol. Every time I would attempt to sing, my lungs would react, erupting in coughing fits. Christmas Eve a night of joy, I am ashamed to say I had a pity party for myself as I silently cried myself to sleep. I woke up Christmas morning feeling guilty over the moment of self pity and vowed to keep trying until I could sing again. The blood clots, their after effect, my asthma was not going to win this battle. I wanted to sing, I was going to sing. It would be March of 2004 before I would be able to sing a simple chorus. In June I rejoiced when I was finally able to sing an entire song, She Daisy's, "Come Home Soon". You would have thought I won the Grammy when I jumped up and down for joy when the song ended and I was not coughing. Of course the jumping up and down for joy did cause me to break out in a coughing fit, which today I find quite humorous. But I sang the song start to finish.
The daily blood thinners took a toll on my body, I was always cold, in a constant state of fatigue, my face had no color, my hair thinned, my gums bled, at times my arms and legs would be covered in bruises from weekly blood tests and my normal tendency to bump into things. I would look in the mirror and be horrified by the way I looked. Now I laugh and joke around calling that year, the time I looked like a drug addict. I won't even discuss the nightmare combination of blood thinners and monthly periods. Blood thinners equals no clots, no clots equals whoosh! While on blood thinners if I nicked my leg while shaving, the bathroom would look like a CSI crime scene. There would be times I would feel something warm on my arm or leg, look down and see I was bleeding but have no clue how I cut myself. It was not unusual for a even a small cut to take an hour to stop bleeding. On a more positive note. the weekly blood tests did help me conquer my fear of needles. I still can't watch as they take my blood, but at least now I can relax and not feel like I am going to pass out.
Some people may get upset with me for stating this, the worst thing anyone can say to someone who has defied death, beaten the odds is “God has a purpose for you." I lost track of the number of well meaning people who made that statement to me. It seems innocent enough, is meant to give a person comfort. In reality it can have the opposite effect by adding more stress to an already exasperating life. It did for me. In my crazy way of thinking; I didn’t know where my next paycheck was coming from, so how was I going to even begin to discover or learn my purpose, God's purpose? The questions over what is God's purpose for me was constantly waging a battle within my brain. What if I missed the signs, or even worse what if I screwed up God's purpose? What if I never discovered my purpose, does that mean my life was meaningless? One simple statement, innocent enough, added to my stress of trying to redefine myself. What I would say to a person who defied death, "Live life, enjoy your second chance." It may seem silly to some, but there are still days when I wonder if I really do have a purpose, did I miss it, or have I already fulfilled it? I have a life now filled with even more unanswered questions. Questions I know I have placed on myself and will never be answered.
When a person is sick, they long for a sense of independence, a sense of normal. You tire of people constantly doing things for you, or the constant question are you okay? Even more detrimental to one's self esteem, do you need help? This loss of freedom, independence made me extremely disagreeable at times. I laugh now at the small steps I took to regain control, often times met with angry concern by my family. I was sent home from the hospital with strict instructions to rest, do nothing strenuous for the next three weeks. A few days after I was home, I was bored, the floor needed to be vacuumed, so I did. I was very proud of myself for being able to vacuum the living room and hallway while I was still on crutches. I was crushed when I was scolded like a small child for what I considered a great accomplishment. I was even further annoyed when over the next few weeks whenever I was home alone I was called every hour or so to make sure I was 'behaving'. I was constantly told if I needed something ask, do not do it on my own. Such an easy request yet for me it was so hard to accept. Relying on others, asking for help has never been one of my strengths. At first, instead of admitting I could not or should not do something, I would push through it. Usually my efforts ended in an asthma attack or sheer exhaustion. My exhaustion would not allow my lungs to heal and infection would set in. I was in a vicious cycle and I was too stubborn to recognize it. Until I was willing to admit to myself I could not do everything, no amount of scolding, yelling, or lecturing was going to change me. It took me to change myself. It can be extremely humbling learning to ask for help on the simplest of tasks. In a way, the acceptance I needed help, learning I could not do everything, helped build character. That was the most difficult lesson I learned. To ask for help was not a sign of weakness, rather a sign I was human. A stronger person realizes their own limitations and embraces them, instead of trying to deny them. We cannot go through life without asking for help at one time or another.
For someone who has always preferred to initiate and participate in games, it can be a rough transition to standing on the sidelines. It was hard watching the fun I was normally part of, the family football game on the beach in Ocean Isle, water balloon fights during the summer, roller coasters at amusement parks, spotting my kids in back handsprings and back tucks, kickball, etc. All the goofy things I had normally done I could no longer join in. Anyone who has been on a diet for a long while cheats, I was no exception I cheated on the physical restrictions my doctor placed on me. Luckily breaking the rules only lead to a few nasty bruises rather than major heath consequences. My punishment for 'cheating' was always the same, hours of wondering, waiting to see if I had done something to my body I was not yet aware of.
The day of cheating that changed me, Hershey Park. For an avid roller coaster lover, it was so hard standing in line waiting for an hour or longer with Kathryn and her friends watching the ride over and over, wanting to get on it. Even harder, when finally at the front of the line instead of getting on the coaster, I had to step over the coaster and wait on the other side. I had to cross the line, the step of shame. Shame reserved for those who are too chicken to get on the ride. I could only step over and watch them ride so many coasters before the temptation was too much for me. The coaster I could no longer resist, the Storm Chaser. I had watched the coaster over and over as we waited, I assured myself, it was a smooth ride. It felt great as I climbed into the front seat, strapped myself in. I threw my hands up and waited for the launch. The beauty, freedom I felt as I hurled, dropped, twisted and rode with no cares until we stopped with the usual roller coaster slam. How did I forget the normal crashing halt of all roller coasters? For the next several hours I kept questioning myself, did I hit my head hard, was that a headache I felt coming on. (a sign of bleeding in the brain is a headache) I could see the bruises forming on the sides of my legs from the car, from where the harness had been on my stomach. I debated as we walked around the park, do I say something to everyone? If I did I knew they would stop their fun and want to have me checked out. I was stupid, it was my fault, I didn't want to ruin any one's fun. So I ignored the bruising and slight headache. I know now that was a supreme moment of stupidity and fortunately I did no major damage to my body or brain. The hours of secret panic and worry taught me a valuable lessen, it may be hard standing on the sidelines, but that was the person I had to accept being for a time!
It took me a while to to accept the term "miracle survivor"; a label given to me by the doctors and nurses who cared for me while I was in the hospital. I was the novelty at the hospital. Medical professionals who were not in charge of my care, would stop by room after viewing my cat scans. Most of time, they would look at my charts, smile and say hello. Other times I would hear them in the hall, outside my room talking about my case, the 'miracle'. I had trouble at first dealing with the concept of a miracle, not because I do not believe in them, but because I did not think I was deserving of one. I learned of a friend who had recently been killed while I was in the hospital. To me my old friend deserved a miracle not me. He had so much to offer the world, I could not see where I could compare. When I hear or read about a child who has lost their battle with cancer, I wonder why was I saved and not them? They had their entire life ahead of them, why not a miracle for them? They estimate 60,000 people die a year from a pulmonary embolus. The majority die from one or two small clots, I survived a massive clot load. I have wondered more than once what made me so special? I am positve many of the people who have died from a pulmonary embolus, had a more important life, more passion, more drive than I. They too had a purpose, why is mine more important? Many times I have found myself thinking, what if I was given a miracle and in the eyes of God I do nothing with it? I had to let go of my self imposed guilt and realize in God's eyes I deserved a miracle, that was all that mattered. I constantly remind myself even today, faith is sometimes never knowing or understanding it is simply believing.
Slowly I started to heal both inside and out. My appreciation of life, the beauty of every day living started to grow within me. I began to recognize everything has beauty. I once again came to see the world through a child's eyes. Even today I find myself more and more when I look up at the clouds, searching for hidden animals or shapes, or simply enjoy watching them as they float by. The sky even on the darkest day is magical if you allow it to be. A soft blowing wind is once again secret whispers from heaven. (Something my grandma use to say.) In time I realized I was neglecting the most wonderful gift each one of us is given, the gift of life. Whether your life is 2 years or 110 years, every life has meaning and purpose. Every day we wake up is another gift, it may not be a perfect day, it may even be a bad day but we are given another day, a chance to experience life one more time. How many people never wake up? I began to comprehend it is up to me if the day was going to be the best day possible or simply neglect the gift I have and allow it to become the worse day possible. I learned not everything or everyone is ugly. It is only ugly if we allow it to be, we chose to see them that way.
When a person nearly dies, there is no avoiding how differently the world seems. How life suddenly changes, priorities change, how they change. I know I changed. Things that once before may have upset me, really don't seem that important anymore. I realized life is meant to be celebrated, enjoyed, shared. Anger takes that joy away. Forgiving someone is much easier now. I have learned to forgive what I once thought was unforgiveable. I have learned to give people a second chance. On the same note I may forgive, but if you are a bad influence I will avoid you. Negative influences are bad and suck all the energy that is good out of a person or situation. I no longer hesitate or back away from calling someone out when they use hurtful or hateful words. I have always stood up for my friends, for what I believe is right. Now I find myself standing up with more ferver, more quickly.
Realizing tomorrow may never come has made me at times a bit more impatient. I tend to want to do it now, or tomorrow the latest. Waiting to me means it may not happen. So rest assured if I am impatient it is because whatever the task or trip is, it is very important to me. I know I have become more impulsive. There are days when I will get in my car and go. At times I have left people confused by my spontaneous nature. To some it can be hard to understand or take my spontaneity. If I see something that reminds me of a person and I think they will love it, I don't wait for Christmas or a birthday I buy it. What better day than today to show someone you are thinking about them? Show them you care?
Good or bad I tend to say what I feel instead of holding it inside, never to be heard. For me that chance may never present itself again. I need, I care, I want are words that should never be left unspoken. I am more open with my feelings (to a point). I don't assume someone knows I love them or am proud of them, I tell them. 'I love you' for some reason is a sentence a lot of people avoid saying instead of embracing and sharing it with those who need to hear it the most.
I jokingly call August 28, 2003 - September 2004 my year of living hell. Now I wonder, how can I call it hell when I learned so much about myself? When I learned so much about life? At times accepting my limitations was and still is a hard journey, a continual exploration of me, good and bad. I survived and will continue to push through it all. The journey taught me to appreciate who I am now, not who I was. More importantly I learned to appreciate all the wonders and possibilities that life holds for all of us. We simply have to open our hearts to see it.