The Tower

As I sit here reflecting on what to pack for my second stint in The Tower, I am reminded of my first stay. I was in the hospital for a total of 39 days...about 5 days at Emory St. Joseph and about 34 days at The Tower. When I first arrived at The Tower, I had no idea I was going to be there so long.

I am going to back up a little to fill in some blanks. When I arrived at The Tower, I did not know what type of leukemia I had. All I knew was that I had leukemia. When you start researching leukemia, you find out pretty quickly how different it is from other types of cancer. First, not all types of leukemia have stages. In fact, most of them don't. When I first started telling people I have leukemia, everyone wanted to know what stage I was in. I suppose it is easier to understand cancer when you can look at the stage and understand what that means. Second, people wanted to know where the cancer was in my body. Leukemia is all over your body, as it is in your blood. People would ask me if the doctors would be able to remove the cancer surgically, or otherwise. This was hard to explain, as my cancer was not in just one place.

How do I prepare my 18-year-old son for what is about to happen to my body when I don't fully understand it myself? To quote my mom at one point in this journey, this is all "weird science" to me, and you might as well stick a bra on my head. I learned I would participate in something called induction chemotherapy. First, I didn't feel like I was about to be inducted into anything, so why all the grandeur around it? I learned I would be doing an induction called 7-plus-3. Y'all, this is where you will understand my boyfriend, Luke. As I mentioned, I named my IV pole Luke, short for leukemia. I promptly placed a picture of the very handsome Luke Bryan on the pole, insisting that since he and I would be attached through thick and thin, he was my boyfriend. On 7-plus-3, I would be attached to Luke for 7 days in a row, for 24 hours at a time. I would get a reprieve long enough each day to shower and change. Sometimes that may come at 3:00 in the morning. At any rate, Luke and I would be a team.

Going into the induction chemotherapy, I still did not know exactly what my leukemia was, other than I now knew I had Acute Myeloid Leukemia. I started researching what I could about AML using a booklet provided to me by the Leukemia Lymphoma Society. First, AML has something called subtypes. I cannot remember where my AML falls on this, however, I was more focused on the type and risk group. As we began the induction chemo, I learned what I could about the types, risk groups, and mutations. Let me tell you, I was overwhelmed by all the possible mutations that may happen. Instead of focusing on that, I started small by focusing on my risk group. There were 3 types of risk groups: good, intermediate (may or may not need a transplant), and adverse/poor (definitely needed a transplant). I focused my prayers on being in the good or intermediate categories.

As the 7-plus-3 started, I was given a long list of side effects I may or may not experience. The list is extensive and a bit scary. 7-plus-3 is a combination of Cytarabine for 7 days and Daunorubicin for 3 days. The Daunorubicin is red, similar to the chemo known as the Red Devil, and it takes about 15 minutes to administer. Cytarabine is the one that runs for 24 hours at a time. Here are some of the side effects I may experience: nausea/vomiting, diarrhea, decreased appetite, mouth sores, fatigue, hair loss, and all my blood counts would go in the "basement." I was taught about the curve of the basement, how things would look going down and coming back up, and where things would need to be in order for me to eventually go home. Fortunately, I had very few of these. Unfortunately, I thought that meant something was wrong and the chemo was not working. The hardest part about all this was having visitors come in and trying to explain how sick I really was when I looked normal, other than sporting a bald head. The actual chemo went by in a blur of sorts. I don't remember a ton of details about the chemo itself. I had a countdown I kept that listed how many days I had done and how many more I had to go. It really helped when I got really sick of Luke.

I walked every single day, for the most part. I walked at least a mile, and some days, I would add the bike to my routine. When I rode the stationary bike, I always did at least 2 miles. To pass the time, I crafted (making wreaths), I journaled, I colored in fun books that had great sayings with curse words, I wrote, I did crossword puzzles, and I prayed. I also learned during this time that the color used to represent leukemia is orange. As a UGA fan, this was a hard pill to swallow!

My friends and family visited often. I do not believe there was a single day I was alone. They helped me decorate my room with a bulletin board set. It was called a "Cup of Pep Talk." Everyone who visited was encouraged to leave me words of encouragement on little latte cups. They gave me items to fill the space: a poster of NKOTB, a poster of my boyfriend, Luke, a Wonder Woman cape, ivy lights, a flamingo, lots of cards, and religious statues/items to help me when I prayed. They brought me so much to do. I had books, magazines, crossword puzzles, coloring books, Legos, cards, Tic-Tac-Toe, and a bottle of Fuck Cancer pills I could open daily to get more inspiration. They brought me motivational bracelets, ordered rubber leukemia support bracelets for everyone to wear, and gave me some AMAZING shirts. (One of those shirts is in the picture in my biography.)

I want to take a minute to give some shout-outs to some amazing people who made this stay a little more bearable. My mom, who stayed with me countless hours and countless sleepless nights. When my hair started to fall out, my mom tearfully buzzed my head for me while my stepdad supervised. My stepdad was there to support me with whatever I needed, including taking on the care of my two dogs, one of whom used to want to rip his head off whenever he saw him. My dad visited often and always brought me the yummiest treats. I have never had a sweet tooth, but I did now. My sister, who stayed overnight with me many times and always made sure we had a yummy dinner when she did. She even came one night with my cousins so we could have one of our wonderful cousins' dinners. My sister, brother-in-law, and niece also had an amazing UGA quilt made for me. My son, who stayed with me a few times, visited often, and created a GoFundMe. He asked me to let him know when he could publish it, and he shared what he wrote with me beforehand. It was so beautiful and moving. He and my brother-in-law also got cancer ribbon tattoos to show their support. My ex-husband and his wife for all the visits, goodies, and, eventually, my ex-husband's helping me to start this blog. They also really had to step up, along wiht my parents, to help my son move away for his first year of college. My friend, Katie, brought many of my room decorations, helped to decorate my room, and prayed with me often. She also did FaceTime videos with me so I could see her beautiful daughter. My friend, Lauren, brought me many gifts, but more importantly, she spent many weekend nights with me. Like my sister, she always ensured we had yummy dinners to eat. The continued time with my closest friends was definitely needed and made the length of time I was in The Tower more tolerable. I want to say thank you to my work friends who visited, along with the countless family members who came. I was super grateful for the amazing team of nurses, techs, and doctors who cared for me, and I tried to remember to tell them thank you often. I hope everyone knows how grateful I am for all they did and continue to do for me.

By this point, I had learned that I had adverse/poor AML. My mutation was something called TP53. It turns out it is at the very bottom of that chart of all the mutations. It is the hardest to get into remission, keep in remission, and is known to have a lower overall survival rate. I love my oncologist, so I hope he knows if he ever sees this, how grateful I am for him and his team. But when he came to tell me about this, I knew something was very wrong. It was written all over his face that this was VERY bad. He was working with a doctor who was in a fellowship, and I asked them to tell me how long I had. They told me that I had 3-5 years, and that if I got to a point where nothing else could be done, it would happen quickly. The doctor who was coming in each day with my oncologist shared with me that she had AML with a similar prognosis as mine. She shared her experience, and it was very helpful to see she had survived and was thriving. I learned that I would need a transplant eventually. I also learned that once I was home, I would eventually begin consolidation chemotherapy until I was able to receive a transplant. I also learned I would be unable to return to work due to my compromised immune system. I was told I should not plan to return this school year at all due to the timeframe of treatment, transplant, and recovery. I learned that I would not be able to go to my house when I left the hospital, as it would be too difficult to maneuver my townhouse. In addition, I couldn't clean up after my cats and dogs due to possible contamination from their feces and urine. My parents planned for me, my two dogs, and two of my cats to move in with them when I left the hospital. My ex-husband and his wife took my third cat. I was starting to realize the life I had before was not going to be the same one I would be living after diagnosis. I had already missed countless events: a concert to NKOTB with my friend Katie, Cirque de Soleil with work friends, the start of the school year, and cancelling a wedding reception we were planning for my brother and new sister-in-law. I was going to miss countless events with friends and family, but I was determined to find a way to keep living my life.

Next time, I will begin to explore what life was like outside The Tower. Until then, I will be dancing with Luke!