Katie

Katie

Diagnosis

I was diagnosed with T-Cell Acute Lymphoblastic Leukemia on September 14, 2013. A few weeks before I had been struggling with a sinus infection that would not go away. My general practitioner had tried a few medicines to clear it up, but I just couldn’t seem to kick it. He decided to do a chest x-ray to make sure nothing was brewing there. I received a call confirming that it was clear, but about an hour later his office called again. His radiologist had taken a second look and saw what he thought were irregular lymph nodes, so they ordered a CT scan.

A pulmonologist then showed us the CT scan which revealed a mass that was about 8 millimeters by 4 millimeters. He called Northside radiology immediately and ordered a STAT CT biopsy, because I was very symptomatic, and luckily they were able to squeeze me in. The CT scan revealed that there was over 700 cc’s of fluid around my heart. The doctors were in shock that I had barely any symptoms, much less that I was alive.

I was moved to ICU and had a pericardial window placed in my chest the next morning. This was the day that we met Dr. Holland. While we knew that meeting an oncologist was not good news, we were all put at ease after doing extensive research and finding out what a great team of doctors Northside Hospital had. With further testing we were told that I had T-Cell Acute Lymphoblastic Leukemia. The disease was very aggressive and needed to be treated as soon as possible. After my six days in ICU I was transferred to the BMT Unit to learn about my treatment plan. The next few days were a blur as we met with doctors, nurses, mid-levels, pharmacists, psychologists, and the whole shebang.

Treatment

The protocol that I am on is called GRAAL—it is a pediatric regimen. When diagnosed I was 24 and had led a very healthy life, therefore Dr. Holland said I could tolerate this aggressive treatment. After about 40 days I was released to go home, and my next five rounds of chemo were administered at clinic, other than the ones that required me to stay in the hospital. During these six long months, I was not allowed in public places. I could only go to clinic with a mask on, or be in my apartment due to my suppressed immune system. When there was good weather I would take frequent walks with my caregivers, family, friends, and now fiancé, Tyler.

After induction chemotherapy, I had a PET scan and found out that I was in remission. Shortly after I started maintenance—this therapy includes two years of additional treatment, which I am still in. I have about eight months of this round and am currently only on oral chemotherapy, but have frequent visits to the clinic, as my body is not tolerating this treatment very well.

To explain the extent of the support I received would require me to show you the hundreds of text messages, support groups, fundraisers, visitors, medical team, news stories, videos, and so much more. I received care packages from cheerleading teams (all-star and collegiate) across the nation. My own alma mater supported me and still does—I was part of the University of South Carolina’s cheerleading team. Friends who are teachers had their students write me letters. I even received an entire binder of tweets, Facebook posts, and letters from people I know, celebrities, and people I’ve never heard of. People are just so great.

My three siblings and my father (who would fly in from Kansas for several days at a time to be with me) were frequent flyers, if you will, at the BMT and at home. One of my biggest supporters is my angel, my mom, who has been looking down on me keeping me strong. In 2008 we lost her to a brain aneurysm, so we know how to fight as a family. I consider myself to be one of the luckiest people in the world. While I don’t have my mom here physically, I have gained so many mother figures, and new “family members” throughout this journey.

When I was first sent home, my very organized sisters, best friends, and loved ones had a planned schedule that the caregiver on that particular day would follow. My now future mother-in-law would drive six hours here and six hours back. On the days that she wasn’t here, I had my dad, and a few very close friends/family. There wasn’t a night that I slept alone in that hospital. It’s overwhelming looking back at the selflessness of people. My sister’s mother-in-law has played a huge role in my journey. She takes me to clinic and my other appointments, and probably has more notes on my medical status than the doctors.

My grandfather (who lives in Laguna Beach) offered to hire a live-in nurse who could keep my health in check and be there to drive me to appointments. My grandfather’s idea gave my sister Wende a brilliant and selfless idea—she quit her nanny job to be my full-time caregiver. She was with me from about 6:00 a.m. to whenever Tyler came home from work. In the hospital, my nurses and care team always said that I was the “party animal” on the floor because of the amount of visitors who came to see me. Sometimes there were six friends in the room with me. All of my relatives and loved ones, friends, sorority sisters, fellow cheerleaders basically bought me a new, comfortable wardrobe. I also regularly received my favorite foods, since I was losing weight so quickly. My foundation of faith also supported me largely throughout this journey. God was and still is on my side.

One of the relationships that I built while in treatment was that of another family going through this. Wende and I were sitting at clinic, while I received a blood transfusion, and were suddenly greeted by one of the sweetest people I think I have ever met. She said, “We heard there was another young person in the clinic and I just had to find you.” Her husband was also diagnosed with ALL and was about a month ahead of me in our protocol. We quickly created a strong bond, and I felt lucky, because he would always warn me about what the next round was like. I would even try to plan my next appointment around his. We’ve laughed together and most definitely cried together.

Northside is still my second home, and sometimes first home. Not only was I provided with some of the most well-known, highly sought-out oncologists, but I was genuinely cared about by them. It was obvious when they couldn’t figure something out, how passionate they were about getting to the bottom of the issue and finding the answer. I was sometimes called the “problem patient,” because anything that could happen to someone in this circumstance happened to me. I was in and out of the hospital with fevers, intolerable bone pain, bladder retention, stomach pain - you name it, I had it! The care team ranged from my oncologist Dr. Holland, who is a genius and life saver, to my mid-levels, incredible nurses, PT, OT, psychology, radiology, schedulers, HR, social media representatives, and much more.

The maintenance phase of treatment is two years of oral chemo, which sounds like a walk in the park compared to the IV drugs that my body was flooded with. Unfortunately I’ve struggled more with this treatment than I did with induction therapy. My dosage has been greatly reduced because my body can’t handle it. This is definitely scary, because the point of maintenance therapy is to keep the disease from recurring. I struggle with terrible bone pain from the oral chemotherapy, and have more nausea than I ever had in intensive treatment.

Throughout maintenance I have been diagnosed with auto-immune diseases, basically had to re-learn how to walk due to neuropathy, and was on high dose steroids for many months that made my pain worse. This is just a small taste of what these drugs can do. Like anyone in my position probably would, I have also struggled with a lot of anxiety and depression throughout this time, but have found a great way to help this through a psychologist and treatment. I have learned to try to accept that my “new normal” is a lot different than my normal was two years ago. It’s a hard pill to swallow—I used to be incredibly active and social and loved to go out and make new friends. It will take a while to feel like myself again, and I have slowly accepted that this is the new me!

I usually have about three appointments a week. My incredible work family is so supportive. They have worked with me since the day I was able to work again, allowing me to work from home on bad days, and I still have the option of going into the office when I am feeling good enough (and my counts are high enough). Not many people can say this about their job. I am lucky to have such a strong support system through my work family.

Future

We are so thankful for the treatment that is currently available, and for the amazing medical teams that care for me. That being said, the treatment for blood cancer is rough and extremely aggressive. If there was a magical cure, or even a more tolerable treatment, I just know the blood cancer world would be a much happier one. Advances in treatment would mean less pain, bad news, and death. While it’s hard to even say, Leukemia is deadly and the treatments can seem unbearable at times. It would make me so happy to see patients receive treatment that didn’t make them so ill, and that required them to be locked up at home for months. Some treatments for Leukemia can even cause secondary cancers, so if this alone could be taken out of the picture, my heart would be so happy.

Tyler proposed last year on the day before Thanksgiving; talk about “in sickness and in health!” We have been together for almost 7 years and are so excited to get married. We are planning a wedding in beautiful Historic Roswell, where we will say “I do” with the support of our family and closest friends on October 22, 2016. People tell me all the time how lucky I am to have Tyler. He is a rare find these days, his heart is so BIG. Wedding planning keeps me positive on the hard days, for sure.

To anyone who has recently been diagnosed, put your seat belt on, because it’s going to be a bumpy ride. Take the bad news with a large grain of salt. Celebrate the good news…A LOT! Surround yourself with positivity and with loved ones. Laugh a lot. Cry a lot. Leukemia sucks. Cancer sucks. But know that every step you take in the right direction, you could be influencing someone to fight their fight too.

I want anyone going through what I did to know that it is an opportunity to raise awareness, to change people’s lives, and to be more passionate about something than you’ve ever been. It brings out the good in all of the people around you. Take it in. It’s okay to smile and it’s okay to laugh at yourself. Also, being bald is the BEST feeling in the world, so embrace it. Staying positive is truly the best medicine you could ask for.

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