My Experience With Leukemia and Having a Bone Marrow Transplant
I was diagnosed with Chronic Myelogenous Leukemia on March 4th, 2000. I was at work the night before and felt a horrible pain in my left side that would not go away. I left work early and made an appointment with my doctor the next morning. It had been so long since I’ve been to the doctor that I didn't realize that the doctor had changed offices and I drove to the wrong place. I ended up going back home and later my mom drove me to the right office before they closed. It was a Saturday and the doctor waited for me to get there before leaving for the day. They sent me to the hospital for blood tests, a chest x-ray and an ultrasound of my abdomen. We went back to my mom's house while the hospital was getting the results and phoning them to my doctor. I ended up falling asleep and then later that evening my mom came in the room crying. Apparently, the doctor called and told her over the phone that I had Leukemia and needed to go the hospital in Chicago for treatment. Since it was a Saturday night, we had to go in through the emergency room. Even though my doctor called ahead I was still stuck in the ER for 3 hours. They admitted me that night and the next day, the doctors asked me a bunch of different questions about my symptoms which I had most of the common symptoms of Leukemia and chalked them up to other things. And gave me a bone marrow biopsy the next day which I laughed through. They said I was their best patient since I laugh at pain. I was in the hospital for a few days while the doctors were discussing my options. At that time there were a couple choices. I could take Interferon and give myself a shot a few times a week or take Gleevec that was just starting to become commercially available. Or I could have a Bone Marrow Transplant. I decided I wanted the Bone Marrow Transplant which back then they called it a cure. My brother had gotten tested to be a possible donor a few weeks later, but he wasn't enough of a match with testing equaling a 4 out of 6. They put my name in the registry and we tried our luck with that. After I was diagnosed, I had to quit both my jobs. It's really crazy going from working about 80 hours a week to nothing. All you do is sit and think.
After I was released from the hospital from that first stay, I was put on an oral chemo and had to do weekly blood tests to monitor my blood count. Your normal white blood cell count is 4,000 to 10,000 and mine was 387,000. They were causing my spleen to enlarge and cause the pain. My side pain went away after about a week and I was feeling pretty good. Since I wasn’t working, I spent a lot of time hanging out with my friends and family and started going to a new church that my friend’s dad was the pastor of. This is how it was for about 3 months. Then one fateful day in June, they had called and told me that they found a donor for me in the registry that was matched a perfect 6 out of 6 and that I had to come get a workup to be ready for my transplant. So the last 2 weeks in June I had gone back to Chicago and gotten what felt like almost every kind of test under the sun, including another bone marrow biopsy. I also had 3 trips to the dentist to get my teeth cleaned and a cavity filled, so there wasn't an underlying infection. So finally I was all ready for my transplant and it was scheduled for July 19th.
In the beginning of July, I had moved out of my apartment and moved my stuff into my grandmother's house in her basement apartment. On July 9th, my mom threw me a surprise birthday party because I was going to be in the hospital on my actual birthday. It was going to be my 21st and she wanted it to be special. My family, my coworkers and a few friends were all there. It was a fun time. My friend and her family couldn't make it to that party, so they threw me a party too a couple days later. It was a really nice time spent with them.
On July 12th, we left really early in the morning to get the prep work done for the transplant. I had a central line put in and got put in my room. I was supposed to get 5 days of extensive chemo, but the doctors had asked if I was interested in doing an experimental research drug with my chemo. I had said okay and they added an extra day of chemo before my transplant. By the time I was supposed to receive the marrow, my hair had completely fallen out. When the marrow came, they just ran it through like an IV. The couriers that had brought the marrow had a little note from the donor. Technically, they were not supposed to give it to me (in case it had revealing information) but they did anyway. It said something like "I hope this works for you and know that I am thinking about you." After the transplant, I was kept in the hospital for a few weeks to monitor my progress. On July 27th, the nurses threw me a birthday party too. It was really sweet. I was finally let out of the hospital on August 7th. I stayed at my mom's so she could take care of me. I was taking so much medicine at that time that I was taking 35 pills a day and 37 on the weekends. Things were going well for the most part. I went for checkups every week. I had to stay indoors and away from crowds and I couldn't go into public places because my immune system was down. If I ever went in public, then I had to wear a surgical mask and sometimes gloves.
In late August, I was starting to get sick. It was called Graft vs. Host Disease and the doctors warned me about it. Basically, my body was fighting off the donor cells. Anyway, it had gotten so bad that I had to go back to the hospital on the 27th. When I got to the hospital my central line got tugged a little. I didn't think anything of it until the next day when it just slid right out of my chest. It wasn't bleeding but there was this whole in my chest. I was more freaked out than anything and calling the nurse to my room to tell and show her. I remember getting an IV put in my arm and I also remember going down to get another line put in. At the time, I had a reaction to the pain medication they gave me. After that, it gets pretty hazy. Sometime after that, some drugs got into my bloodstream and I went into septic shock. The doctors didn't expect me to live through the night. On September 10th, I went into a coma. I didn't wake up until September 24th. During that time, I don't remember much of anything that happened to me or what was done to me. I only remember stories that my mom and other people told me and I recall a couple of the crazy dreams that I had. While I was unconscious, I was in the ICU and I was intubated. I also had a spinal tap. Thankfully, I don't remember that one. My friends and family had come to visit me and my aunt had promised to take me to Disney World if I woke up. (She kept her promise and I went to Disney World and a few other fun Florida destinations for the first time in my life in June 2002). The doctors had me on morphine and it wasn't until they weaned me off that I finally woke up. After I woke up, my legs and feet were so swollen and weak that I had to learn how to walk again. That was an interesting experience. I also had to practice my hand-eye coordination because I couldn't write to well either. It was just a bunch of scribbles. Also, I had lost my voice...when they had intubated me, something happened and it affected my vocal cord and esophagus. I couldn't speak louder than a whisper for months. I was put on new medication that affected my blood sugar and I had to get my finger pricked and then get insulin shots. By the end of each night, I think I had all my fingertips wrapped in band-aids because they pricked my fingers so much and I was still on blood thinners. It was 100 days past my transplant and they had to give me another biopsy to see if the Leukemia was still present in my body. By this time, I was so emotional that I just wanted to get it over with and go home. I was told at my 100 day mark that there was no Leukemia anymore and that I was 98% my donor cells.
Top left: Right after I got in the hospital for my transplant - Top right: During my hospital stay after my transplant day - Middle Left: My nurse, Kristen, and me - Bottom right: My niece, Olivia, and me - Bottom left: after my hair grew back and it was very curly
I was released from the hospital on October 16th. It didn't last very long because they told me to come back in a few days later. They had scheduled an appointment with the ear, nose and throat people on the 19th to see why my voice still hadn't come back. I ended up staying in the hospital again because they thought I had CMV. I'm not quite sure what that is but it is highly contagious. It turns out I tested negative for that and they let me go home on the 23rd. When I got back to my mom's house, we had set up with a home health care nurse and a physical therapist to come help me. This went on for about a month and a half. My walking had improved and I continued with my stretching. I was able to enjoy the holidays even though I couldn't go the the family gatherings. I had family and friends come visit me some though.
On December 27th, I had a temperature of 102.3 and the doctors made me go back to the hospital to be monitored. I was put on fluids, because I was dehydrated. After a few days my fever went away, but they still wanted to observe me. I was still there on New Year's Eve and I got to see the Chicago firework show out my window. It was awesome! I was released on New Year's Day but my mom didn't come get me until later in the evening. The nurses were having a party and they let me stay and celebrate with them. I had a fantastic time.
I stayed with my mom until February and then I moved in to my grandma's. My hair had grown back completely and was very curly. I went for checkups every few weeks. In May of 2001, I went back to work for Walgreens. I had my year check up in July of 2001 and they told me I was 100% my donor down to the DNA. Which makes part of me turning 80 this year since that is how old my donor is now. I was off all my medication in November of 2001 and my life had started getting back to normal. In March of 2008, my mom and I took a trip to South Carolina to finally meet my donor, Karen. That was one of the best experiences of my life. She calls me her daughter and says that we have a special bond now. I'm looking forward to visiting her again in the near future. And now I celebrate 25 years of being cancer free!! And I use my experience and knowledge of what I went through to help others. I signed up to be a mentor for other bone marrow transplant patients and I've also raised money and participated in the Leukemia & Lymphoma Society's Light the Night Walk for over 20 years.
