My name is Katie Hilliard and in 2004 I was diagnosed with Acute Lymphoblastic Leukemia. Please bear with me as I tell my story, since it was years ago and I have blocked most of it out of my life for a good reason.
Acute Lymphoblastic Leukemia (ALL) is an acute leukemia which grows quickly if not treated rapidly, and can be fatal within months. Lymphoblastic are abnormal cells consisting of a large nucleus and small cytoplasm that was once thought to be an immature lymphocyte and is now associated with a specific type of leukemia that develops in early forms of lymphocytes, a type of blood cell. These blood cells are found in the soft inner tissue of the bones called bone marrow. The resulting condition is cancer.
I had just turned 22 years old and thought I was invincible. I had a promising career in the fashion industry, many friends, and a loving family. Six months prior to my diagnosis I had started to experience many precursors to my illness. I would feel dizzy and then vomit. I had always thought it was heat stroke or low blood sugar attack. I would get flu-like symptoms with a high fever and sore throat, I would take medicine and sleep, and the symptoms would disappear. I would have one beer when out with friends and would be really intoxicated, which those who know me, know that I can hang. My entire body was covered in bruises. I have always been clumsy and I loved going in mosh pits at punk rock shows, so obviously that’s what the bruises were from, right? Like any other 22 year old, I would always brush away how I was feeling and continue to do my thing. Again, I was invincible!
It was not until I had traveled to Las Vegas to celebrate a friends 21st birthday and attend a fashion trade show for work, when I started to think “something is wrong.” I began to get what I called fake flu more and more. During that weekend I also had a very hard time eating and even swallowing water. The night before the trade show I decided to look into my throat and see what was going on. I discovered a meatball size bloody ball in my throat. I was later told the meatball was a hematoma, which could have burst and drowned my lungs in blood, killing me. Although I didn’t know what was wrong yet, panic set in and I cried myself to sleep.
The next morning I thought I would wake up and everything would be fine. I knocked on my boss’s door ready for work like nothing had happened. I said “good morning”…. when the tears started to run down my scared face. At that moment I asked my boss to take me to the emergency room.
The doctors at first said it was anemia; a condition where the red blood cell count is less then normal. Then they said I had pancytopenia; lack of red blood cells, white blood cells, and platelets. More tests followed. The only thing I remembered for the next two weeks was a nurse telling me I had leukemia which, by the way, I had no idea was cancer.
The fact that I had cancer still did not register. At one point It was mentioned that my blood counts were so low that if I had not come in when I did I would have dropped dead. I had no immune system. If I would have caught a common cold or flu I would have died. I had called my best friend who was still in Las Vegas waiting for a flight home. I was in the emergency room and she rushed to my side. She also spoke with the doctors, and then she communicated it all to my parents. In less then 6 hours, my family was in Las Vegas. I could only imagine what was running through their heads as they rushed out the door to be by my side.
The doctors made it clear to my parents that it was going to be a long road. I would now need numerous blood, platelets, transfusions and chemo therapy. That was when my first pick line was installed into my arm. But before starting any treatments the decision was made to fly me back to California. They thought, and I agreed, that being close to home was best.
I had no insurance. I was taken to UCLA Harbor Medical Center in Harbor City, CA. Once at UCLA my treatment began. That was early September of 2004. My time at UCLA were my darkest days. The realization that I had cancer was overwhelming. A million thoughts raced through my head. The first was…”why me? I am going to die! I don’t want to live. Bring me a gun!” I wanted so badly to go back in time and live my regular life. I pushed everyone close to me away. I didn’t care. I thought I was the only one dealing with this. I know now I was wrong. While I was struggling, my family and friends were taking it just as hard, if not harder. I even pushed away God.
After my first few rounds of chemo I began to get bone marrow biopsies and spinal taps (which were very invasive and painful procedures). UCLA would not sedate me during the procedure. Later I learned that at City of Hope they always do. Now let me tell you what a bone marrow biopsy consists of. They take a 4 inch long, very thick needle and punch a hole into your bone in the tailbone area, scrape the inside of your bone, and extract your white blood cells. This is extremely painful and the only way to get a true cell count. A spinal tap is when they take another 4 inch crooked needle that is put in your spinal cord and test for cancer cells that might be in the brain. I still have nightmares about these procedures to this day. I also get sharp pains at the injection sites. At the time, I also was receiving endless transfusions of blood and platelets. I then prepared myself to lose my hair. I thought it would be the easiest thing. I was wrong. Losing my hair stripped my identity from me and I fell into an even deeper depression. Those who know me know I am an extremely happy and very positive person, so being depressed was not a normal look on me. I began to lose myself. I just could not understand “why me?” I was also thinking, “what could I have done differently in my life before to make this go away. Should I have partied less? Eaten better? What did I do to god for me to be suffering like this!”
I lived in this ever darkening world. Enduring scans, tests, x-rays, blood draws, etc. The idiots at UCLA kept moving my rooms, sticking me next to people with pneumonia. With a compromised immune system that would have killed me if I caught it. I knew then that I was really fighting for my life and I might not come out of it alive.
I may have felt alone, but I was not. My family visited often. Granny would make chicken and dumplings and watch soap opera’s with me. My Dad would stop by every morning before work and read me the newspaper and bring me a donut. My sister would bring me videos of my dog, Layla. My friends visited and brought candy and coloring books. I stared at the wall, slept most of the day and kept quiet. I know it was hard on all of us, but in my head I was zoned out because in my mind I was dying.
I continued on like this for quite some time. I do remember one moment where I knew I had to start thinking positively. The day that had turned me around was when my friends made me a collage of pictures from all of the fun things we had done in the past. I would lie there each day remembering each moment from each picture, thinking, “I want to have more memories, I can be strong, I want to live!” That’s when I began looking at the situation at hand in a more positive manner. However, I was still extremely frightened and feeling down. I knew what had to be done and just went through the motions.
Meanwhile, my family looked for ways to get me health insurance to get me out of UCLA Harbor Medical Center…a truly terrible hospital. My stepmom figured it out, since I was only 22, I could be enrolled under my Dad’s insurance plan if I was a full time student. They enrolled me into online classes. That’s when the first miracle happened. I had health insurance!
With the positive vibes rolling, I learned that a doctor had accepted my case at City of Hope. City of Hope is a research hospital. At the time there were only 100 beds and the doctors had to accept your case in order to be placed in the hospital. All beds were full. However, because of my age an oncologist was willing to treat me in the pediatric ward. I remember arriving for my first stint at City of Hope in an ambulance. The EMT’s insisted that I ride in the gurney into my new home. I resisted and walked in on my own. Bald, bold, and scared…I entered my new room. All the personnel were looking at me, like, “who is she, with the EMT’s?” They viewed me as strong, but inside I was weak.
Even though I was mentally stronger at this point, I continued to push family, friends, and God away. I did not want them to deal with my problems. I felt that they did not need to deal with my burden.
Once at City of Hope the doctors started to prepare my body for the end result….possible survival. Since this was a research study and I was the research, I had 3 possible ways they were going to treat my cancer. I could receive a bone marrow transplant, a stem cell transplant, or have a placebo. I begged for the stem cell transplant, and that was what I got. Now they had to find a donor, first they would test your sibling, as they normally have matching cells. They tested my only sister Kim & she did not match me. From there they would match me with an unrelated donor to the national registry, which sometimes can take years. There are millions of people out there on this registry, and the odds seemed impossible. Within weeks they tested the first 5 people that might be possible matches, and the very first one was an exact match.
How lucky! All I knew about this donor was that he was a 45 year old male. I tried reaching out to him years ago and never received a response. Regardless, this man gave me the gift of life and I will forever be grateful.
Now that we had the stem cells, they began to prepare my body for the transplant, which took months. First they would have to place a more reliable pick line in me. They placed one that would be connected directly to my heart on the upper left portion of my chest. With this in place they began more regiments of chemo. Some intravenously, some enormous shots injected into large muscles, some slow dipping, and some injected into my spinal cord, going directly to my brain (which by the way if you moved just a tiny bit it could paralyze you for life). I felt so violated and gross from everything they were doing to me. I was like a pin cushion and felt as if I did not matter to the doctors and nurses, because they were touching me so much. I had a deep resentment towards all of them. I know now they were doing what they needed to do to make me well again.
I would receive a bone marrow biopsy every week to check my cell count, under sedation of course. I continued to receive platelets and blood transfusions. I felt sick to my stomach everyday. I was released from the hospital to be with me family for Christmas. I continued my treatment as an outpatient. I still had to visit the hospital every couple of days, but it was really nice being home.
After the New Year, it was time to take my final journey towards “possible survival”. I was to stay in the outpatient bungalows on the City of Hope premises. These bungalows were like little apartments, with a kitchen, shower and few beds to make it more comfortable for patients to live out their final days or, as in my case, receive radiation treatment, and retain some normalcy in your life. In order to receive my stem cell transplant they would kill all of my remaining blood cells, good and bad. The first step was 1 week of full body radiation.
In this consultation I was told that I would no longer be able to have children, as the radiation would kill my reproductive organs. This crushed me, and I was holding a secret for many years. I had an abortion at 19 that no one knew about and now I will never have children of my own. I felt as if a ton of bricks had just fallen on me. I still to this day have hope that one day I will be a mom, whether it’s my own or adopted. Prior to the radiation treatment they made me lead lungs that would be inserted into plexi glass. They strap you in a harness and insert these lead lungs in front of you. You could not move, because if you did the lungs could be damaged permanently. They let you play a CD (my choice was AFI). Everyone leaves the room and there is one red light that I could not help looking at. Each treatment was only 15 minutes, but felt like an eternity. During these treatments, I would become extremely angry at the circumstances and wish I could just knock someone out or throw something so hard to hurt something. When really that someone or something was the cancer.
Everyday I would go into treatment and everyday I grew weaker. My mom would cart me to the bungalow each day in a wheel chair. One of our favorite memories was when I was being a bitch and she accidentally went over a bump in the wheel chair and I went flying. She laughed and I cried. It really lighten the mood and for a moment it seemed normal again. We both laugh about it today. Aside from having a great tan, I was now really weak. I was sent home once again, only to return the next week for a more permanent stay.
I remember checking into the hospital being so scared of what was going to happen. My new room was surrounded by very young children that seemed to have worse symptoms than mine. Once checked in they would start the heavy chemo. This made me sicker than I had ever been. I began to grow sores in my mouth. At that point I could no longer eat or even take a sip of water. I had to be fed fluids through my pick line. One of the weirdest feelings was when I could no longer poop. I also needed a catheter, since I was too weak to walk or use the bathroom.
Because of intense pain I was placed on a morphine drip every 20 minutes. When you face death they give you whatever you want to make you comfortable and man did I love the drip. I fell into a deep black hole of zoning out with my drugs. I would wait patiently for my button to turn green, so I could get my next hit. I would have the most vivid dreams only to be awakened by a nurse to check vitals or a code blue next door. It was extremely hard being in the pediatrics ward, when you see younger kids and even babies suffering worse than you…even dying. Believe me it is very difficult to be positive when this is happening all around you. I sometimes felt like I should be dying rather than surviving. I never understood why I was spared each time.
Visitors were limited and they all had to wear masks while in my room. At this time I was over getting visitors because it seemed like all they would ask is “what did the doctor say?”, “how are you feeling?,” “what meds are you taking?” etc. I felt like I could be stronger with out them. I told everyone that I no longer wanted them there, which really hurt them. The only person I would allow in was my sister Kim. She was the only one that would just come in and shoot the shit. She just acted like all was normal. She was my rock during this stage.
The next step was to change my blood type before the transplant. My unrelated donor was a different blood type. Therefore, I needed to change my blood type. My mom and sister took me in to a different part of the hospital and the doctor connected me to this crazy looking machine. They put 2 IV’s into my arm. One IV would take 85% of my type B+ blood out of my body and the other would be pumping O+ blood into my body. The remaining blood would morph into O+. I remember being really high on meds, laughing and thinking, “this is crazy shit!” After this procedure I would be ready to receive the long awaited stem cell transplant.
I was anticipating another crazy procedure for the stem cell transplant. The nurse came in that morning, 1/26/2005, and said “Happy Birthday” and then connected a very small bag of stem cells to my IV. It looked like orange juice pulp and it only took 15 minutes to put in my body. I could not believe that after all the torture I had endured it was the easiest part of the entire process, putting those stem cells in my body.
I know it may seem like I was out of the woods, but we had to watch closely to make sure my body accepted these cells. I started to experience GVH disease (graft versus host disease). This is when your body fights against something foreign in your body.
During this time I formed an infection in my pick line on my chest. They now needed to remove it. This was extremely painful because my skin had grown over the line and it took 4 nurses to hold me down while they pulled it out. Then they placed a new one under my clavicle bone. I remained in the hospital for a few more months. I was so numb to everything at this point. I was consistently high on my meds, that I had now tricked myself that I really needed it, even though my physical pain was gone.
Finally, I was told that I had hit remission. I now could not wait to get out of that hospital room. I wanted to be out before St. Patty’s day. The doctors said that it was quite possible. However, first I would have to wean myself off the drug addiction I developed during my ordeal. I also had to learn to eat on my own again. So, they took me off the morphine drip and I was just taking Vicodin. However, I kept faking symptoms to get more. I would fake headaches to get a morphine shot and freak out if the nurses would not give me more vicodin. I would force myself to eat, even though nothing tasted good and everything would come back up. Slowly but surely, March came around and the doctor was now telling me that I needed to stay for another month. I threw a fit and made the decision to leave against her recommendations. I was discharged on March 17, 2005. I would still have check ups, blood draws, and have to take numerous medications. I would go every other day, then weekly, then monthly, then yearly, and still do up to this day.
Once at home and in remission you think this is going to be easier, but it was nothing but a different struggle. I was taking what felt like 20 pills in the morning and 20 pills at night. All of which made me feel like shit. On top of this I was still very weak. I had a really hard time holding down food because my body kept wanting to reject it. But man it felt good to poop again! I had severe muscular dystrophy and had to teach myself how to walk again to build my muscles back up. My Dad would take me on a walk everyday. First we tried going to the end of the drive way, then it would be to the neighbors, half way around the block, and finally making it around the block. My muscles were responding and getting stronger.
Even though I was out of the hospital, I was still depressed and numb about what had happened. I thought once I wast out that I would be invincible again, but I still clearly needed healing. I could not do normal things that my friends and family were doing. I thought I would never have a boyfriend again or be loved by one. I had to wear a mask every time I went outside to protect from germs and would be stared at by strangers. I wore a wig and my face was super puffy from the medications. You feel like you will never be yourself again, and I would never be myself again. I had changed. On top of the physical changes, I kept telling my doctor I wanted off my pills. She kept insisting that I still take them. One day I decided I would no longer take them. I kept it a secret from everyone and she kept telling me on my appointments that I was doing great. I eventually told her I had stopped taking them. She was not happy with my decision but could do little about it. I have not taken any of those pills to this day.
I continued to eat just to throw it up. Little by little it was getting easier. I kept walking each day and went further and further. I eventually lost the wig and rocked my cute shaved head. Eventually I got my long hair back. I would not give up. I had come too far! Still in my thoughts I could not believe it…”why did I survive? Why me?”
There is no known cause for my leukemia. I will never know how I got it or if it’s coming back. I just live each day as if its my last. I am extremely positive in all situations and look at the finer things in life. I live with mild side effects. I have chronic dry eye, thin skin, some joint pain, an irregular menstrual cycle and the emotional scars. As the years go by I am sure I’ll be faced with new side effects and new challenges, but for now I am alive!
I never wanted to change before and now realized that change is a good thing…that’s life. I am blessed! Today I have a stronger family with an amazing sense of unity. I am closer with each member then I ever was before. They stuck by me in this journey. They kept me positive when I was not. They held my hand when I was weak and gave me enduring love through out.
My friends…how do I start? I knew I had a lot of friends, but I never realized that I had “Friends!” They held carwashes, garage sales, blood drives, and even had a golf tournament to raise money for me. They raised $20k. They never for one minute gave up on me surviving. There was no other outcome for me then survival, in their eyes. I will forever be grateful to them. I was able to continue to work in the fashion industry and strive towards meeting my career goals, even though I am still looking for that perfect job.
I found my path back to God, who had secretly been there the whole time, I just never believed it. I pray almost nightly and believe that he has my back at all times. I found the love of my life. Jason. He reminds me how beautiful I am inside and out each day. Together we have a new dog, Rocky, and just began a new life in Texas a few months ago. Together we are family and one day hope to bring children into it. I began to travel years ago and can’t wait to see the rest of the world with him. My confidence has returned and the rest of my life is ahead of me. I stop to smell the roses and appreciate all things in this world.
Through this journey I have become very strong and I truly can not believe that I am such an inspiration to others…And damn it feels good! I now truly believe that I am invincible, but don’t take things for granted.
I am very happy that I have had the opportunity to share my story with others. I feel this has helped me heal in ways that I did not know I needed healing. I hope my story reaches those who need it. I am a warrior…these are my stripes.
“Decide what you want…believe you can have it, believe you deserve it, believe it’s possible for you”. –The Secret