Jamie's Journal
by Jamie Baker
Monday, October 9, 2006. A day I will never forget. I was home from college on Fall Break. I hadn't been feeling well for a few months so I had visited my family doctor the Friday I got home. I had a blood test done due to my history of Iron-Deficient Anemia. My doctor called me at 9 AM on Monday morning and said, "Jamie, you need to get to the ER."
I spent most of Monday in the ER at my local hospital with my parents. Nurses came and went, drawing blood mostly. All day long we waited for someone to just tell us what was wrong with me. Finally about 3 PM, a hematologist walked in and broke the news to us. I remember him saying, "We found blasts in your blood, which tells me we might be dealing with some kind of Leukemia."
The next hour or so was probably the hardest hour of my life. I sat on the bed in the ER room, my head on my dad's shoulder, both my parent's arms wrapped around me. I cried and I cried. How could this happen to me? I'm only 21 years old! My parents just held me tight and told me to let it out. We were angry and sad and confused all at the same time. I wanted to know where my siblings were and I didn't know how to tell them. At first, I told my mom not to tell them anything until we knew, but changed my mind when I decided I wanted them by my side too. My sister showed up as she had been planning and my dad told her once she got there. My dad explained it all to my brothers once they got home from work and soccer practice. One of the hardest things to do was call my boyfriend, who lived an hour away, and ask him to rush to my side.
Results from a bone marrow test confirmed the doctor's unofficial diagnosis. On Wednesday, October 11, I was diagnosed with Acute Myelogenous Leukemia. I was relieved to find out that day that research showed pretty good odds of survival. Two out of three patients go into remission after the first round of chemotherapy and 40-50% of those are cured. I told my friends and family, that day, to "count on that statistic increasing because I am going to be part of that 40-50%."
In my online journal, I would recount all my emotions and feelings about my diagnosis and the treatment process. A few days after the diagnosis, I wrote:
Everyday my family has been surrounding me with love, support and entertainment. My mom has spent every night with me in the hospital on her most comfortable roll out bed. She has been very strong, waking up with me for the medications and blood tests and never letting my spirits get low. If you didn't already know, she is one of the strongest, most passionate women alive. I'm so blessed she is my mom. My dad has been incredible as well, juggling visits, work, and taking care of the rest of the family back home. He is a loud snorer though so he doesn't get to sleep on the oh-so wonderful cot. My siblings have been awesome. Grandma is a trooper as always. Her long fingernails felt super when she washed my hair today. Jonathan [boyfriend] has traveled back and forth from school everyday. (What a guy!) So many people have visited, sent cards or gifts. I appreciate them all! It keeps me positive and every bit of it gives me more strength in this fight. I'm going to win this battle. I'm going to win.
The day following diagnosis, I began chemotherapy. Just before Grey's Anatomy started that Thursday night, my nurse got the IV going. I remember joking with her that she was pushin' it with timing because my show was about to start. Once hooked up, I would get a constant drip of this chemotherapy drug for a week. Many people think of chemo as poison. I guess it has the characteristics of one, the way it kills off all the bad stuff and the good stuff. But I thought of it as healing liquid because it was killing the bad stuff and the good stuff could grow back.
Finally it was Friday, the fifth day in the hospital. That day started with a cup of my favorite Starbucks coffee from my aunt and uncle. It was a wonderful surprise to a day I was anxiously awaiting. Friday didn't mean a break from school or work was hours away. This time it meant all my friends could come home from college to see me. And they did. Each visit helped me forget where I was for a while. I still looked normal but I know it was difficult for them to see all the tubing coming out of my arm. I found myself trying hard to keep them smiling and laughing. Throughout my treatment I did this with most visitors and I think it helped them get through it with me. As long as I was okay, they would be okay too.
But there came times when I had to ask myself if I really was okay. Was I just faking this worry-free attitude? Did people realize that cancer tears you to pieces sometimes? I feared I was sugar coating my story in my online journal. These moments of doubt are the moments I realized how much I was depending on the love and words of encouragement of family and friends.
When I started losing hair, I wasn't too worried. I figured I would find a nice wig because I figure that's what most chemo patients do wear wigs. I joked with people about the kind of wig I should get. Pink? Blue? I tried on a few at a shop in the hospital. Ultimately, none felt right. I didn't feel like me in any of them. While wearing one, I felt like the cancer scored another point against me because I was disguising myself in someone else's hair. I didn't have anything to hide or cover up. Even though my hair had not fallen out yet, I started getting excited about boldly showing off my bald head as if it screamed, "I have cancer. So what! I am still me!"
The first time I went out in public with a bald head, I discovered an internal struggle going on. Part of me wanted to throw on my snow hat I carried with me. The other part challenged me to be myself. I had to take a huge leap out of my comfort zone. I remember throwing back my shoulders, grabbing my boyfriend's hand and walking into the store with a smile on my face, hatless. While in the store, one lady approached me and asked if I was a chemo patient. She explained that she was a cancer survivor and said she was inspired that I had the confidence to go bald in public. Before continuing her shopping, she wished me luck. After we left, I laughed off the numerous stares I had gotten in the store. As long as I kept the right attitude, nobody could hurt my feelings if they stared at me. I hope they learned something in that moment and that is that cancer doesn't always win the mental battle. I hope my smiling face and bald head showed that.
Throughout my experience, the support from family, friends and strangers kept me positive. They would leave me messages on my website, send me instant messages, facebook messages and emails. I was overwhelmed daily with cards and gifts. One afternoon I woke up from a nap and saw my boyfriend up on a chair taping my cards all around the window. This was such a symbolic thing for me because I would look out that window all day long and sometimes think the world was going on without me. But with these cards hugging that window, I was reminded that there were thousands of people out there praying for me and riding with me through the ups and downs.
Within the first two weeks of being hospitalized, I began to feel some nausea and weakness from the chemo. But it wasn't the discomfort that got to me, it was knowing why it was happening. I never thought I would get cancer. I had a life plan laid out for myself and no where in it had I written cancer. But who would have? I wrote the following in my online journal:
I know there's a verse in the Bible that says God won't give me anything I can't handle. I can handle this. I just can't cross it off my list today…I hope that you all are learning something from this with me, and that is that every single moment of your life is a gift because you never know what will happen with the next breath you take.
The days in the hospital went very slow. However, I always had someone there with me to keep me company. My mom would spend the night every night. Whenever she went to work, my dad or my grandma would come up. My siblings visited often and so did my aunts and uncles. I don't think my sister or my brothers ever worried much. I found strength in them because I could tell how much they believed in me. My family spent all their energy cheering me on and picking me up when I would start to crumble. Whether it be rushing to my side with a new box of tissues or bringing me my favorite take-out, they knew what to do shake out my nerves.
I probably smiled the most when my boyfriend was there. Even though he was in the middle of a semester back at college, which was an hour away, he would drive down almost every day just to spend an hour or two at my bedside. He never once let me think negatively about my illness. He reminded me that it was temporary and talked with me about the things I wanted to do when I was better. When he wasn't there, he was a phone call away, no matter the hour.
Years before I got cancer, I had made a poster for my bedroom that said "I love my life". I wrote things I loved about my life all over this poster and hung it near my bed so I would never forget how blessed I was. A friend of mine reminded me about this poster while I was hospitalized. After thinking about it, I realized I still did love my life. Yes, I was hospitalized with a life-threatening cancer but there was no way I couldn't love my life with the family and friends I had there to pull me through it all.
I had to spend my 22nd birthday in the hospital. It was one of my favorite birthdays because each gift meant so much to me. The best gift was ending my first round of chemotherapy. A week or so afterwards, I had a bone marrow test to see if the chemo had cleared out my bone marrow as it should. After receiving good news that the bone marrow was clean, I wrote in my online journal:
You would think I would have a good morning since we had more good news. My morning has been a little rough though because the doctor clarified the next steps. The whole process is going to take at least 3-4 more months and that was hard to hear. It means I'm here for the holidays and also, returning to school for the winter semester is looking less likely… However, I'm getting better as the day goes on. I realize that 4-5 months is a very short time compared to all the living I have left to do. Yes, everything I had scheduled and planned perfectly for the next several years is on major hold. This morning I just thought "Okay, God! I get it! You get to drive!"
On November 3, 2006 I was given permission from my doctor to leave the hospital and go home for a while!
I didn't go home right away. That same day there was a Platelet Drive being held for me at our local Hoxworth Blood Center. So my mom and I first visited the drive where several of our friends were. In all, 19 people signed up to donate in my name. There was a surplus of baked goodies and drinks for everyone to enjoy before and after giving blood. We spent a few hours there talking with everyone and meeting the medical staff that handled the needles. It was neat to meet these people who might have collected some of the blood I got in the hospital, which saved my life.
When I got home for the first time, my grandma had posted a welcome sign on the door. There were flowers everywhere that had collected over the month I was hospitalized. I received even more gifts that day too. I spent the rest of the day relaxing with my family and boyfriend.
I had been determined to get out of the hospital in time to see my alma mater girls' soccer team play in the state championship. Since I was out, I did get to go to the championship game and watch them win for the second consecutive year. It was inspiring to see this because it gave me strength to keep fighting my battle until I am cured.
November 13, 2006 is another day I will never forget!! This was the day my doctor told me I was in REMISSION! This was very exciting and such a huge relief for me and my family. The doctor asked me when I wanted to start my consolidation chemotherapy, the kind that knocks out any remaining blasts in my blood. I immediately told him I wanted to start as soon as possible. I started the next day.
That meant back to the hospital for about five days. I remember walking back into the hospital and feeling a bit bummed. I had just left this place and it seemed like my two week break at home was such a tease. I wrote in my online journal:
It's been a struggle. I thought that being in remission would make the rest of this so easy. However, it's been a challenge to know that I'm doing so great, yet I'm not able to go back to school and take finals and do things other 22 year olds are doing right now. I'm getting quite the lesson in patience though. Every minute, every second, means I'm closer to the holidays and eventually closer to normal life.
I got through the first round of consolidation chemo and went back home. I always had to be careful not to get sick while at home or else I would have to go back in the hospital. I ended up sick after the first round and had to spend six days in the hospital recovering. Those were frustrating days but they passed and I would get two more rounds of consolidation chemo in the coming months. Fortunately, my doctor planned them around Thanksgiving and Christmas so I got to be home with family. I also was able to attend a fun benefit my sister put together for me at a bar where over a hundred friends came and showed their support for me. I was completely overwhelmed.
While going through these rounds of chemo I found myself getting very bored at times. Boredom, I realized, is the worst thing ever. Boredom was very depressing and it would suck whatever energy I did have out of me. Boredom made me feel like I had no purpose. No reason to get up in the morning. I had good days, though, when I would jump out of bed make a list of things to do for the day. This usually involved cleaning because that is a never ending thing in my house. I realized I needed a friend to keep me company. I managed to talk my parents into getting a puppy around Christmas time. I finally had some responsibility again with taking her out, babysitting and playing with her. We named her Glory.
One of the things that stressed me at times was being so behind in school. So in February, I took an interest in online classes. I found an environmental class I was interested in and signed up. I loved it. Before I knew it, the five weeks came and went and that made me five weeks closer to being cured.
Following my third round of consolidation chemo, I was able to go home. Less than a week later, however, I was rushed to the hospital by an ambulance in the middle of the night. I had been shaking uncontrollably and breathing was difficult. My temperature was an amazing 105.8 degrees. My heart was racing and I was worried something terrible was wrong with me. After having many tests done in the ER, I was admitted. This sickness had me in the hospital for well over a week. They finally determined it to be a bacterial infection that could only be wiped out with IV antibiotics. In the end, I got to have my IV catheter removed. Although this would mean I would have to get poked by needles again, I was relieved to be free of medical equipment.
My white blood count had difficulty recovering from that third round of chemo. After the first two rounds it only took a few weeks for my blood to normalize. When a month passed, we began to worry. My doctor wanted to do a bone marrow test to see if the leukemia had come back.
Results from my bone marrow test did not come for a few days. Those few days seemed like years and I became very stressed. This was such a crucial test and the difference in the two possible results was drastic. If the results were bad I would have to start thinking about a bone marrow transplant. If they were good, well, I would be the happiest person on the planet.
On March 1, I was waiting all day by the phone for the doctor's call. Wherever I went, outside with the dog, basement to do laundry, didn't matter, I was holding a phone. Finally at 3PM he called.
"Jamie?"
"This is she."
"The news is good! The test was clean!"
I believe my immediate reaction was laughter. It kept me from crying. I finally had reassurance that I would be okay. The weight of the world was lifted off my shoulders and I could breathe again.
After waiting a few more weeks for my white blood count to climb back to normal, my doctor had a change of mind. Since it was taking so long to climb, he canceled my last round of chemo that we planned on doing. Once again he made my day when he said:
"Well, Jamie, you're done!"
Done! Done with chemo and these daily visits to get blood checked. Go back to normal life. Be normal!! I had been dreaming of this day for so long and it was finally here.
This is where I am today. I am getting ready to go back to school in the summer. Since I lost most my muscle with chemo, I have been trying hard to build up endurance and get some muscle back. Everyday I am so happy when I wake up and realize it's all over. I now dream of the day, in a couple years, when my doctor will say, "Well, Jamie, you're cured!"
Here is what I wrote in my last online journal entry:
If I was bound to get Leukemia, I couldn't have picked a better time. Out of high school. Don't have a real job just yet. Mature enough to handle it. Young enough to kick it in the butt. Lined up perfectly with fall and winter semesters at school and is ending just before summer semester begins. Never had to worry about being bald in public because it was cold enough to wear a snow hat. By the time the warm weather started, I had hair.
One of the scholarships I am applying for honors a man who had cancer and called it the best and worst thing that had happened to him. I'd have to agree. I have an advantage over many, and that is that I have seen my life flash before my eyes. I saw all my favorite memories and also cloudy snapshots of ones I want to make. Without this experience I do not think I would believe that I can do anything I put my mind to. I am going to spend the rest of my life clearing out the clouds and working to make my dreams come true.
Jamie is a 22 year-old chemical engineering student at the University of Dayton, OH. She was diagnosed with Acute Myelogenous Leukemia in October, 2006 is currently in remission. She will graduate in August, 2008. Jamie wrote this story so that she could include it in a cookbook she created entitled "The Taste of Hope." All the proceeds from sales of the cookbook go to the American Cancer Society. For more information on Jamie and her cookbook, please contact her at: bakerjac@notes.udayton.edu.