Non-Hodgkin lymphoma (NHL)
This testimonial includes a description of this patient’s actual medical results. Those results may not be typical or expected for the particular disease type described in this testimonial. You should not expect to experience these results.
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I was a freshman in college when I was diagnosed with cancer. I was more annoyed than upset or scared because all I could think was, “I have stuff to do. I’m too busy for this.” I was working two part-time jobs to put me through school full time, and volunteering at my church part time while also taking care of family matters. And I had a new boyfriend named Michael. I wasn’t really sure how he was going to take it.
But I wasn’t about to let cancer stop me. The thought of getting back to school and life drove me to fight and get better.
How it started…
I had been sick for about six months with what my general physician thought was mono. It really started getting bad around the three-month mark because I began to have severe pains in my legs. I couldn’t understand why. I ended up losing function of my legs. By the time I was diagnosed, I was in a wheelchair. My doctor did blood tests, which led her to believe there was a possibility it was cancer.
After seeing a local oncologist, my family and I decided to see a specialist at a major teaching hospital in Chicago. I went through 40 hours of tests—everything from MRIs, CT scans and a PET scan to a spinal tap and bone marrow biopsy. That’s when I found out I had anaplastic large T-cell non-Hodgkin lymphoma.
The specialist at the teaching hospital had a very “grab-the-bull-by-the-horns” kind of attitude. He wanted me to start treatment the next day, which I did. I began my first of several cycles of Hyper-CVAD chemotherapy.
But my family and I were not happy with the care I received at the teaching hospital. We decided to transfer my care to a hospital closer to my home. I continued with my chemotherapy treatment there, but was equally disappointed by my care.
My mom heard about Cancer Treatment Centers of America (CTCA) from a friend and decided it was worth looking into. My family’s home in Lakemoor, Illinois is less than a 45-minute drive from the CTCA hospital in Zion, Illinois. She called CTCA and was able to set up an appointment. Initially I was very reluctant to go. I told my mom I just wanted to finish out the hell I was dealing with because it’s just what cancer is. I figured the care I received was how it was supposed to be.
We went for a consultation at CTCA at Midwestern Regional Medical Center in October 2010. At first impression, what changed my mind about transferring to CTCA was the food. After three or four cycles of hospital chicken and fish for weeks at a time, a stuffed portabella mushroom with pine nuts and spinach in it was like heaven to me. That’s the kind of healthy and delicious food they serve. It’s a far cry from what you’d expect from a hospital cafeteria.
When I met with my doctors, I knew I got the “A-Team.” With Dr. Redei and Dr. Abutalib, I got doctors who were knowledgeable about my disease and how to treat it. I was really impressed with how calm and confident Dr. Redei was in coming up with my treatment plan. He knew what I was dealing with and that made me feel better about what I was up against.
I continued to learn as much as I could about my disease and went through more cycles of chemotherapy at CTCA. I also met with my dietitian there pretty regularly about what I was eating and how I was doing. What I learned from her helped me keep my strength up and better manage nausea caused by the chemotherapy.
Going through a stem cell transplant
Once I completed my chemotherapy regimen, I underwent a stem cell transplant.
Dr. Abutalib explained the procedure to me in terms I could understand. Basically, I would receive a medication that would make stem cells leave my bone marrow and enter my bloodstream. The stem cells would then be collected and frozen until the time of the transplant. When I was ready to receive the transplant, the stem cells would be thawed and returned to my body in a procedure that’s like a blood transfusion. The stem cells would travel back to my bone marrow and begin to produce new blood cells.
I knew it was going to be hard, but I didn’t know it was going to be as hard as it was. But I walked into begin the treatment with my head held high and I said, “I am going to kick this thing in the ass.” I thought if I had an “if” in my mind I might not come out, I’d be giving that “if” the opportunity to take hold of me.
My stem cells were harvested at the end of November. The process of removing the stem cells from my body sort of reminded me of donating blood. Although, I had to sit still for about six hours while my blood was pumped into a machine. My sisters kept me distracted during the long wait. I was so relieved to go to the bathroom once it was over.
I was then able to enjoy the holidays with my family and Michael. I returned to CTCA January 4 for the actual transplant.
Following the transplant, I was hospitalized in the Stem Cell Unit at CTCA for about a month. The whole time, I ate healthy and worked really hard at getting better.
By the beginning of February, my doctors felt I should be OK to go home. They had me come back every couple of days to ensure I was doing well in my recovery.
Coping with the effects of cancer and treatment
For a matter of months after the transplant, I really didn’t do much. My focus was on recovering. I was so tired all of the time. I felt like I got hit by a Mack truck. It was like my body went into so much shock after having its “reset button” pushed.
Losing my hair because of the chemotherapy was not all that bad. It was a lot easier to manage. Before the cancer, I had thick, straight hair that reached down to my waist. The only time I was self-conscious was when I was around Michael because I wanted him to have a normal relationship. I would always put my wig or a hat on when I was around him. But there was one night when he lifted up my hat, kissed me on the forehead and said, “It doesn’t bother me.” That was the day I realized he loved me no matter what.
The most difficult part of going through it all was losing a year of my life. I lost the opportunity to transfer out of the community college I’d been attending at the same time as all of my friends. Many of them have moved on with their lives to the point I can’t yet. Another disappointing thing is I can’t have kids. I want to have children so badly, it’s disheartening. The cancer ate away at my lower vertebrae and the doctors feel I won’t be able to carry kids.
CTCA gave me the greatest gift and that was to be able to look back and laugh on a lot of the things that happened. I could crack jokes with the doctors, nurses and techs, give Dr. Abutalib a hard time whenever he egged me on, and just make light of the situation. My mom and I laughed about a lot of the stuff too.
When I was going through cancer treatment at the other hospitals, I only left my home to go to receive treatment. I shut myself into my house and alienated myself from people. I didn’t go to parties or Bible study. I was so afraid of catching germs that I just didn’t go anywhere.
When I met Dr. Redei, he helped me understand it wasn’t so much about what I couldn’t do, but what I could do. He encouraged me to continue to have a social life. He’d tell me, “Go out and see a movie with friends, but just wear a mask.” Go out and go and do things. That message really stayed with me. CTCA isn’t just about surviving…it’s about living. As a cancer patient, your primary focus is to survive. But that shouldn’t be your only focus. Experience life as you go through cancer. Go out and meet new people, experience things. Live life!
In a lot of ways, my cancer experience brought my family closer together. When my mom wasn’t there, my sisters would come over and hang out. I also had friends that would visit. I had a really good support group. I made a lot of friends in the hospital too. I did feel like the youngest patient. Our biggest decision was whether I should go to a children’s hospital and get treated or a grownups’ hospital. I chose to go to a hospital for grownups. I’m glad that I did because I learned so much from all of the older patients about what they were going through and how they handled things. I learned a lot about myself too. It made me grow up and take this in a mature manner.
21 years and counting
Life is great! On May 30, 2012, I celebrated my 21st birthday. Starting in the fall of 2012, I will be going to Fontbonne University in St. Louis to study dietetics. My hopes are to graduate and become a dietitian at a pediatric cancer center.
I’m also planning my carnival-themed wedding to Michael. We got engaged on Thanksgiving Day 2011. We started out our day by going to our favorite lighthouse near Kenosha, Wisconsin. We read our favorite Bible verse and prayed. Then Michael got down on one knee and proposed. The first place I thought about going to was CTCA. So we drove down to the hospital, I walked up to the Stem Cell Unit and announced to my nurses, “I’m engaged!”
I continue to go to CTCA every six months for checkups. I also go to hang out and talk with patients. I love going there to see everyone and catch up.