When I was admitted in the hospital because I was neutropenic I had no idea what was happening to me. I had no idea what being neutropenic even meant. I learned that it meant my blood counts were so low I could not survive on my own.
I remember when they announced I was being admitted. It was around 2 or 3 in the morning and a young doctor came in the emergency room. She asked me for a run down of my symptoms. As I told her all my symptoms it felt like I could go on for hours of each pain and ache I was experiencing in my body. They helped me out of the emergency room bed onto a wheelchair. As they wheeled me up to the oncology impatient floor all I could think about was how weak I felt. I melted into the wheelchair, barely able to hold myself up. As we got to my room they wanted me to stand on the scale to get my weight. I almost fell over trying to get up out of the wheel chair. The nurse and my mom had to hold both of my arms for me to get on my feet. As I stepped on the scale a feeling of worry flooded my body. I'd lost almost 10 pounds since the week before. This was the beginning of me seeing body falling apart right before my eyes and not being able to pick up the pieces. I couldn't walk. All I could do was lay in bed. Laying in bed hurt. My entire body hurt. Walking to the bathroom was a marathon. Each step a constant strain on my body, each breath took all the energy out of me. I remember laying in bed feeling and saying nothing. I didn't speak most of the time. I didn't talk. My mouth and jaw hurt so much that it hurt to open my mouth. Talking and conversing with people, my bubbly personality was taken away from me. I couldn't see. I was having tremendous pressure in my eyes so the doctors sent me to the Optometrist in the hospital. The nurse wheeled me in the waiting room and the worker at the main desk said "what's HIS name" The worker thought I was a boy and I said nothing. I felt nothing. They put me in the eye examining room by myself. I had no one, I barely could talk, I could not walk and I was in constant pain. The doctor finally came in and said he was going to dilate my eyes. After each drop I could feel simmering pain. My vision was getting blurrier and blurrier. I wore an eye mask for the next two days. I was in complete darkness. I felt nothing. I couldn't go to the bathroom. I hadn't gone to the bathroom for 4 days now. I was so constipated the pain consumed me. Just moving in bed struck my muscles. I couldn't sleep. I stayed up for hours on end wishing the clock could move faster. Wishing the pain would go away. It didn't. The next day my hair started falling out. Just as I thought it couldn't get worse it did. Each strand that landed on the pillow, each strand that was intertwined in my fingers, each strand that landed on my face was a reminder. A reminder that the cancer was taking everything away from me. The cancer was taking over my body. I couldn't take it anymore. I needed to shave my hair off. I needed the strands of hair to stop consuming my bed. I just needed it to stop. At this point I began to cry each time I looked at myself in the mirror. I was so broken, looking in the mirror made everything more real. I had my mom tape a trash bag to the mirror. I didn't look at myself for days. No one in the hospital could cut my hair. I remember crying to my therapist about how broken I felt. My hair was leaving my body, piece by piece. I was so out of control of my body and I couldn't do anything about it. All I could do was cry. On my 5th day in the hospital the doctors announced that I was getting discharged. I was going to leave the hospital. I was going to go home. I remember crying tears of joy. After 5 days being attached to an IV poll I was going to be set free. I cried and called my dad "I did it! I'm leaving the hospital!" I was finally able to to survive on my own. My dad finally brought in the razor so we could shave my head. The day I'd been dreading was here and I remember it perfectly. We brought a chair in the bathroom and I faced the wall. My mom was on my left side holding the razor and my dad was on my right side holding my hand. I played John Mayer on my headphones to take out the noise of the razor blade cutting away the last thing I had of my previous self left. The heartbreak consumed my senses. I heard the buzz of the razor bade as it went across my scalp. I felt my hair fall off my head and onto my shoulders. I saw my hair cover the floor. I felt my chest clench up as I fought back the tears from falling down my face. I heard my mom whisper "Lena it's going to be okay sweetie". The blade stopped. I decided to uncover the trash bag from the mirror and take a look at myself. I remember saying "hey, I don't look too bad". That's when I knew. I was going to be okay.
2 Comments
My first day of chemo was the beginning into the unknown. Every cancer case is different. Every person is different. This was my case and this was the beginning of the war with my body, the cancer, and the chemo.
I remember walking into Children's National for my first day of chemo. All the nurses were all happy, loud, and excited to be at work. I was the exact opposite. I was terrified I had no idea what to expect and them being loud was not helping. I immediately shut down. I was having a panic attack. After I calmed down they accessed my port by shoving a needle into the layers of skin in my chest to get to it. I remember trying to stay strong as I braced for the unknown pain that would come next. Luckily it wasn't too bad because I put Lidocaine (a numbing cream) on it to ease the pain. ----I received the ABVD chemo regime. Each cycle (I had a total of 5 cycles) included 8 hours of chemo Wednesday and Thursday followed by 2-3 hours of chemo Friday, a Neulasta shot on Saturday (or Monday depending on appointment) and 1 hour of chemo on the following Wednesday. This was followed by 13 days "off" to give my body time to gain its strength back before it starts all over again.--- The nurse then directed me to a room called "pod 3". It had a nurse table in the center surrounded by 4 smaller rooms with a curtain closing the entrance. The smaller rooms were called the pods. They had two recliner chairs, a tv and a window to look out at the parking lot if you were lucky. These rooms are where I stayed from 8 am to 7 or 8pm to receive chemotherapy. It was all so foreign to me. I had no direction. The doctor came in to check in on me to see how I was doing later in the day. I remember saying "I haven't thrown up yet!" and he chuckled and gave me the face of "let's hope it stays that way." Well it wasn't. I began to have hot flashes. I was burning up one minute and freezing to the point that my teeth were chattering the next. My body was going out of control and I couldn't do anything about it. I decided to video chat my brother to distract myself. I was doing a little better. Telling him what I had for lunch earlier, I felt normal. Then a terrible feeling was stirring up in my stomach and in the back of my throat. I started uncontrollably throwing up. My mom grabbed the iPad out of my lap and the nurse came in with a bag. After I calmed down and stopped throwing up they sent me home. My first day of chemo was over. I remember getting out of the car and being greeted by my dad. He smelled like cheap pizza. The smell was terrible. I immediately ran up the stairs using every ounce of energy in my body to throw myself on the bathroom floor and began to throw up again. This is the last moment I remember. I guess my mind blocked out the next three days because of how draining, traumatic, and horrific it was for me. What my mom has told me was I was then admitted to the hospital from Wednesday night to Saturday afternoon. I was throwing up so much I was at risk of dehydration so I needed to be under close watch by the doctors. All I did was sleep. I had no energy, not even enough energy to cry. When Wednesday came it was time for my last day of chemo of my first cycle. They revved me up with four different types of nausea drugs. When I finally got to go home I slept until the next day. I woke up and was so weak that changing how I was laying in bed was draining. I stayed in bed from Wednesday till Saturday. My body began to ache from laying in bed so much. I had no energy to get out of bed or even move. If I needed to go to the bathroom my mom had to help me get up and walk. I couldn't even hold myself up by myself. The bathroom was five feet away from my bed and it took every ounce of my energy to get there. I remember being so out of breath and strained after each step I took just to walk those five feet. My body was shutting down and I couldn't help myself. I was too weak to wash my face or brush my teeth. My arms were so weak I couldn't raise them to reach my face without feeling a tremendous ache of pain. I didn't have energy to take a shower. I was so dirty. My teeth hadn't been brushed in couple days, my face was starting to break out because of all the excess dirt and my body was full of sweat from my night sweats that would drench my bed each night. I was hopeless. I was in so much pain that tylenol had no effect on me. The doctor prescribed me oxycontin to relieve the pain. The oxy made me feel scared. I felt like I was in a different room looking at myself. I hated it, but it was the only thing that took the pain away. I remember over the course of three days waking up from sleeping, opening my eyes to see a family member in the room and closing my eyes to go back to bed. I felt nothing. I was nothing I was numb. On Saturday I was feeling worse. I began getting hot flashes and tremendous shivers. I had a fever and needed to go to the hospital because I was at risk of an infection. I remember sitting in the car on the way to the hospital. I could barely sit up. I had no energy to cry or even worry. I just sat there looking out at the window seeing the city lights shine. We were in the emergency room for hours. I just laid there and said nothing. I felt nothing. I was so weak I couldn't walk. The nurse had to push me in a wheel chair into the bathroom and my mom had to help me onto the toilet. What was happening to me? After tests the doctor came in and said "Lena, you are neutropenic we are going to have to admit you to the hospital until your blood numbers go up so you can survive on your own." All my blood values were almost 0. Without being plugged into a monitor and pumped with by an IV bag I could have died. The worst thing about cancer is you can't help yourself. It consumes you and your body and you can't do anything about it. I was about to begin the worst 5 days of my life and I felt nothing. After my diagnosis it was time to take action.
I got my first PET and CT scan. This was another day of fasting that lead me to sitting in the "hot room"... 101.7 degrees to be exact for 3 hours. One hour was preparation of fluids, one hour was drinking a lovely "lemonade" flavored contrast dye as they inject a radioactive dye in my IV, and another hour is waiting for that to get in my system. I remember this being so uncomfortable. The heat, the enclosed room, endless unfamiliar faces of nurses and doctors coming in to check if everything was "ok". What does okay even mean? I remember being so exhausted and distressed as one nurse came in asking if everything was okay and I couldn't take it anymore and I screamed at her "WHAT DO YOU MEAN IS EVERYTHING OK? I HAVE CANCER". That was the first time I said I had cancer out loud to a stranger. It was exhausting in itself. Later in the week it was time to meet my oncology team. We met in a darker room with three sets of couches and couple chairs. I remember them smiling at me with hopeful eyes, I had no idea what they were going to say next. And frankly, all I could think about was the constant pain my body felt from just sitting, I couldn't even hold myself up. They began with saying I have stage 3 Hodgkins Lymphoma. Stage 3. The cancer was in my neck, chest, stomach and pelvis. It was slowly taking over my body, trying to kill me and all I could think to ask is "will I loose my hair". They then pulled out a huge packet of information explaining that I will have 5 chemotherapy cycles. The packet was full of the side effects of the chemotherapy. It was a packet of side effects... what was this medicine going to do to me? I remember sitting in this meeting feeling nothing, no emotions or thoughts were going through my head, I was numb. Later that week I met with the doctor and they explained I was going to a medical device implanted in my chest that would be a direct line to my blood stream called a "port". They showed me a doll with a port in it. It looked so foreign and terrifying. Fast forward to after my port surgery. My doctor wanted to check in with me before I was going to start chemo the following week. He had the nurse look at my port and "de-access" it. Little did I know the surgeon left the IV needle in my port this entire time and the nurse was about to yank it out of my chest. To this day I remember the pain I felt. I remember the exact scream I cried after the pain flowed throughout my body. I remember thinking is this really what my life is going to be like from now on? It was the week before my first day of chemo. I decided I should cut my hair short so when it fell out it wouldn't be huge strands of hair. This was one of the hardest days in my journey so far. I came in with my hair matted and tied up in a bun. I hadn't washed it in weeks, I was too weak to even stand in the shower. I remember sitting in the chair as she was cutting my hair off and just looking at myself in the mirror trying to hold in the tears. My hair was one of my most prized possessions at the time. I worked so hard on maintaining the color and finally found the perfect length to frame my face and now it was going to be all gone. After the haircut was done a lady who was waiting to get her hair done said "it looks so cute on you what a fun summer cut!" Little did she know I was about to enter anything but a fun summer much less a fun summer cut. |