‘I can’t tell my dad, please, you have to.’ I couldn’t say the words. ‘Sometimes we don’t all make it to the end.’: Young woman survives cancer 3 times, says she is ‘finally living her full life’

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“Growing up, I was always involved in sports, activities and playing outside until the street lights came on. I played three sports all through high school and went on to play two years of collegiate tennis. After graduating college in 2005, I moved back to Chicago. At 31 years old, my whole world changed. I was in the middle of a thriving career, newly married and trying to live my young life in Chicago.

Courtesy of Casey Head

My whole world came tumbling down when I was diagnosed with Acute Lymphoblastic Leukemia on 2/14/14. Happy Valentine’s day to me. My initial symptom was a lump on my neck and I just assumed I was getting strep throat or something. I asked my husband if he had one and he said no. I set an appointment with an ENT (ear nose and throat specialist). He felt it and said, ‘Let’s try antibiotics and have you come back in two weeks.’

When I stopped taking the steroids, I had my follow up appointment with the ENT. During those five days I started to feel extreme fatigue, huge bruises started showing up all over my body, and by the morning of the appointment I was pale as a ghost and couldn’t make it up a flight of stairs without stopping to take a breath. I went to the ENT, and my husband for some reason said he wanted to go with me. I honestly thought, ‘What’s the big deal?’

Courtesy of Casey Head

I saw the doctor and immediately he sent me across to another building to see an internist. The internist said, ‘You should go to the ER and get blood work done IMMEDIATELY because it will be the quickest way to get results.’ While I was waiting in the ER, that’s when they broke it to me. That’s the moment my live changed forever. They said, ‘We will  have to confirm through biopsy but we are 99% sure it’s cancer.’ I was put into an ambulance to downtown Northwestern Hospital in Chicago. I sat in the ER waiting for a room to be ready. I told my husband, ‘I can’t tell my dad, please, you have to.’ I couldn’t say the words. It wasn’t until years later when I could. Honestly, my husband took on the burden of telling friends, family and my work. I could not say the words myself.

I was immediately hospitalized for 28 days. It was confirmed through a bone marrow biopsy, or 3 to be exact. Unfortunately, I was too sick to have fertility preservation done at that time. I only had 4 hemoglobin and was immediately started on a two-year long chemo protocol. I was able to get out of the hospital a few days early because I lived only a few miles away. After leaving, I continued going to the doctors for infusions, treatments, and tests 3-4 times a week.

Courtesy of Casey Head

I was so grateful to be home but at the same time it was exhausting going to the hospital so much and for hours each time. Sometimes I’d be there up to 10 hours with infusions, blood transfusions, platelet transfusions or vitamin infusions. I was exhausted physically but somehow kept going. I learned when I am in survivor mode, I handle most things really well. My husband, dad and mother in law all come to every appointment (not all at the same time) so I wouldn’t be alone or have to drive myself. My family had my back 100%. I would say to myself, ‘Okay, just take it day by day and do the best you can.’ I told myself, ‘I am going to be the best patient I can be.’

At the end of June of 2014, I had a stroke from an unfortunate combination of a spinal tap with chemo which caused a leak. I became dehydrated and didn’t eat for 3 days. That combined with the peg asparaginase (an anti-cancer, chemotherapy drug) caused me to have not only a stroke but seizures and a venous thrombosis (blood clot). They sent me to the ICU where I went into a medically induced coma. The stroke left me temporarily paralyzed on my left side. I didn’t know at the time if I would ever be able to use my left side again. I felt numb and couldn’t believe what had happened. I felt and literally WAS helpless. No one could tell me if I was ever going to be able to use my left side again (you know they err on the side of caution) so it was very frustrating to figure out if I was going to be okay or not. After the stroke I couldn’t think very clearly so I was a bit like a zombie at times.

Courtesy of Casey Head

I was in the ICU for a few days until I could be sent to a rehabilitation hospital. I was there for about two weeks, over 4th of July weekend. At that point I had to relearn how to walk, eat and move with my newly useless left side. This was probably one of my darkest moments. I said to myself, ‘I just know if I could somehow figure out how to tie my sneaker on my own I will be okay. I just know deep down inside I can do it if I just keep working. If I just keep doing all the exercises eventually it will come back. It HAS to.’ I didn’t know how long it would take but I wasn’t going to stop trying.

So, that became my goal. I spent the next 8 weeks going to rehab 3 hours a day, 5 days a week. I never missed one session. Slowly, I regained the use of my left side. First, I started working on my gait, then movement of my left arm, and finally using my fingers, which proved to be the most difficult part. I had to relearn how to type, using the basic typing programs. All this while still going through chemotherapy. My body was being pummeled in every way. I started going to gentle yoga through Gilda’s Club. Just knowing I wasn’t alone and seeing other survivors thrive regardless of diagnosis gave me more hope than anything else. Being with a bunch of people that understood me without having to say anything was absolutely transformative.

At the end of October/early November of 2016 I thought I would be good to go back to work. I was so desperate to get back to normal life. Seriously desperate. Looking back, I should not have gone back to work that soon. Shortly after, I got into my first remission. I thought I was on my way. I slowly started gaining weight, which turned into a lot of weight. I think I ended up putting on around 20-30 pounds, the heaviest I had ever been. I was struggling to say the least. I felt like a big beach ball walking around all the time. I was gross, disgusting, and miserable, and my hair was really short and I didn’t know what to do with it. My skin was even discolored, I wasn’t sleeping I felt and looked like a mess. Basically, I didn’t have my sh*t together. I felt so uncomfortable in my own skin. I felt ugly.

Mentally, due to the steroids, I also became a crazy person. I had extreme mood swings. I was irritated and on edge all the time. I honestly did not feel like me. I sadly took all this out on my husband who bore the brunt of my frustration, I literally couldn’t help it. So, I started to get more serious about training and health. First with my own body weighted exercise and then picking up weights to get stronger.

Courtesy of Casey Head

In July of 2015, I finally finished the chemotherapy and the ridiculous protocol, being allowed to skip the rest of the peg asparaginase. Seven weeks later I relapsed. I thought I was doing well, starting to lose some of the weight and get back to normal. Sadly, it was just the beginning.

Luckily, because of bloodwork they found it early. I was immediately sent to the hospital. The doctors informed me my cancer was not responding the chemotherapy the way they wanted. This is when I was started on my first of two immunotherapies, one of which was called Blinatumomab. I was spiking fevers of 105 degrees the nurses on the cancer floor could not break. I was close to being sent to the ICU, but I managed to convince the intake doctor to let me stay. When the ICU doctor came back into the room, she said, ‘We will keep you here for now but if your temperature goes back up we’ll have to take you to the ICU.’ I said ok, I understand.

With chemo off the table and one immunotherapy out, I didn’t really have many options left. At the time, Northwestern was working on a clinical trail, so we went down that path. I started to do all the testing required for the trial along with having my own stem cells harvested. Then we were told the trial was cancelled. There were two deaths and the drug company decided to pull it.

Basically I didn’t have options. The leukemia and lymphoma conference for doctors had just concluded and my medical team suggested we try the second immunotherapy. There wasn’t very much information about it yet. But I had no other options. So, I waited. I felt like I was watching my life through a TV screen. I was there but I wasn’t really there. I had to tell my dad I didn’t know if I would live or die and his response was, ‘Well, sometimes we don’t all make it to the end.’ I was really angry at first but looking back I totally understand what he meant. He himself was coping with the reality just as much as I was. My husband and I talked a lot about how I wanted him to keep living regardless of the outcome. My friends were just trying to keep it light around me, to distract me. I felt robbed and hopeful at the same time.

With over 60 days in the hospital I was starting to go a little stir crazy. After 62 days they sent me home in hopes with a letter of compassion sent to Pfizher l would be sent the second immunotherapy. I was released just before Christmas. I thought it was going to be my last visit home so I tried to soak in every moment I could. I spent the next month and a half cleaning out closets, going to the gym and figuring out what my husband would need if I weren’t there. You know, exactly the opposite of what you would think a person would do if they didn’t know if they were going to live or die.

Well, I was finally approved for the immunotherapy, Inotuzumab which worked. I was in remission again. Then I headed straight into the hospital for stem cell transplant, more chemo and total body radiation. The anticipation was nerve racking. I didn’t google anything. I didn’t want to know what was about to happen. I was already mentally preparing for the worst possible outcome but hoping for anything else. I was already feeling the effects of the chemo and radiation which left me a little loopy, but even high on all the meds I was so worried it wasn’t going to work.

Courtesy of Casey Head

Something called graft vs. host disease (GVHD) was now happening in full effect, including mouth sores, strange rashes everywhere, bloating, constipation, and other weird things. I did not feel at all like myself. I couldn’t pee for some reason so I was retaining all liquids I was ingesting. I started to have really intense panic attacks. I finally went home after 32 days in the hospital riddled with anxiety and retaining over 30 lbs of water. I felt like a bloated whale. A week after I went home the water weight was coming off. I was relieved when it was just water weight but I became dangerously close to 100 lbs so I was drinking Ensure supplements like water trying to get my weight back up.

Seven months later, as I was recovering slowly from my stem cell transplant, I heard the one piece of news I didn’t ever want to hear ever again, ‘Your cancer is back.’ I was rushed in to the hospital to confirm it with another bone marrow biopsy. It was confirmed I relapsed again, for the third time. I didn’t know how I was going to get through it. My husband held me as I cried and said, ‘I just don’t know if I can do it all again.’ I took a minute to figure out if it was the path I wanted to take. I was so exhausted, I didn’t know what would happen nor was I in a state to even TRY. I dug deep and knew in my heart I had to fight again. I was not going to let my family down by giving up. My medical team decided it would be best to do another round of immunotherapy, instead of another injection of stem cells. Thankfully, Inotuzumab did work, again. I have been in remission since the end of October 2017.

Courtesy of Casey Head

All through treatment, hospitalizations and the stroke I continued to incorporate exercise into my daily routine the best I could. I started with walks every day, continuing to set goals for myself to walk a little further and faster each time. I grew stronger every day and it helped with the side effects of chemotherapy. I am FINALLY, now living my full life. Having decided to not go back to the corporate world, I have made health and fitness my priority. I received my 200-hour yoga teaching certification along with my personal training certification. I am using these skills to help other women going through cancer thrive by living the best life they can while undergoing treatment and transitioning into their new normal life again. I am showing and teaching them they can get through treatment in a healthier way through movement. And giving people joy in the worst times of their lives.”

Courtesy of Casey Head

This story was submitted to Love What Matters by Casey Head. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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