My story begins back in 2012. I remember it like it was yesterday. I was sitting in Orlando traffic with the window down. It was a beautiful afternoon. I was driving home from work. I scratched the side of my neck and felt 3 tiny pebbles underneath the skin. I though it was odd, but didn’t think much of it. I brushed it off and forgot about it. Over the course of a few months they proceeded to get bigger and multiply. I thought I had a allergy of some sort. I tried eliminating certain foods from my diet. I thought maybe I’m eating to much processed food. I cut out all proceeded food,dairy and meat. I was sure this would take care of what ever was causing the inflammation and swelling. After all, I felt fine other than that so obviously it couldn’t be anything serious.
A few weeks later, it was the 4th of July. My mom, who is a nurse of 30 years, came over to visit. We lived two hours away from each other at the time. I was glad she was coming over because I haven’t see her in awhile. I wanted to get her thoughts as to what she thought was going on in my neck. When she arrived I told her what was going on and had her feel my neck. She said right away “you have swollen lymph nodes” she said it in a very concerning voice and told me I needed to get it checked right away. I brushed it off and told myself she’s just over reacting. How could something be wrong with me when I’m the healthiest I have ever been in my life? I workout 6 days a week and don’t even eat processed food. It irritated me that she would even think that something serious could wrong. I told her I Would get it checked just to make her feel better, knowing deep down that I probably never would. I just needed to figure out what I was allergic to.
As more time passed the lymph nodes in my neck continued to grow and they were around my collar bones as well. My mom convinced me to get a needle biopsy to try to figure out what was going on. I agreed. I wasn’t too concerned because I still felt fine. I had just completed a half marathon. I thought well I’ll make her happy so I can prove to her it’s nothing serious. I had the biopsy and the results came back “inconclusive” I was relieved because to me that meant if it was bad it would have showed up, right?? Well.....I was told the next step was to have an actual biopsy where they would remove the lymph node and send it out for testing. I scheduled the appointment for the following week. I thought good, now I’ll know for sure I’m fine.
I had the biopsy. It was a fast inpatient procedure done in the doctors office. He said I should have the results in about a week and he would call me. So about a week later he called and said the biopsy came back negative. I said “I knew I was fine” I couldn’t wait to tell everyone I was right and it wasn’t anything serious. Now I could get back to figuring out what I was allergic to.
At this point about a year had gone by and my lymph nodes were huge you could see them just by looking at my neck. I was getting so frustrated. What’s going on with me? What’s causing this? I was talking to my mom about my frustrations and she said “I think we should see an oncologist.” I said “why” it’s not cancer. I already had the biopsy so it’s a waste of time. I’m not going. She started crying and said please, we need some direction. Please go. We argued for a little bit and I finally gave in and agreed to go. Since she’s a nurse she knew exactly who she wanted me to see so I let her make the appointment.
The day finally came and I walked in the doctors office with my now husband (we weren’t married just yet) and my mom. I looked around and saw the waiting room was filled with bald, sick looking people. I thought to myself, I don’t belong here. I’m not sick. I wish I wouldn’t have come here. This was a mistake. I took a seat and waited to be called. They finally called my name. I sat it the exam room waiting for the doctor to come. I couldn’t wait to tell her I’m fine and I’m sorry I’m wasting her time. She came in and I explained to her my story. She looked at my neck and said you need a biopsy ASAP. I was quick to tell her that wasn’t necessary. I already had one and I’m just fine. She looked at me and said well you’re going to have another one and this is the lymph node I want. She pointed to the large node sticking out of my collar bone. I thought to myself I can’t believe I have to do this again. I’m about to get married and this is such an inconvenience.
I got married on July 7th. I was diagnosed with Hodgkin’s lymphoma on August 26th. I had to have a PET scan to see how bad it was. I had never had a scan in my life. I’m extremely claustrophobic and I cried the entire time. I kept thinking I’m too young to die. I just got married and this wasn’t supposed to happen. What if he doesn’t want to be with me. What if he can’t handle it? What if I can't handle it? What about the kids? Will my hair fall out? We didn’t even go on our honeymoon yet. After the scan I cried to my husband. I cried for what seemed like hours. He told me he’ll never leave my side and that we’re in this together, we will fight together.
A few days later I was back in the oncologist's office to discuss scan results and treatment. I sat there sitting in the middle of my husband and my mom. I could hear my mom sobbing next to me. My husband was silent....dead silent. His dad passed away from lymphoma 20 years prior. My face felt numb and I couldn’t focus on when the doctor was saying. It was too much to process. The scan reviled that I was a stage 2. It was all happening so fast. She said I had to get a port put in for chemo. I didn’t even know what that was. She gave me a tour of where I would be receiving chemo. It was a room filled with recliners where I would sit with other cancer patients and receive chemotherapy. I was terrified as I looked around the room. I thought I was going to throw up. I guess this is my life now. I’m a cancer patient. The following week my husband and I went on a cruise for our honeymoon. We came back on September 9th and my first chemo started 3 days after that. I was told I would lose my hair so I cut it short to prepare myself. My treatment plan was every 2 weeks for 4 hours each time. 4 months total.
I walked in ready, or so I thought for my first chemo. Blood work was first before we started. Next was going over the possible side effects of the chemo. It was a stack and I do mean a stack of paper worth of side effects. I got through the first 2 pages and cried and told the nurse to stop reading it. I’ll sign what I need to sign but please stop reading. I can’t take it. Can we please just get started? I just want to get this over with. My heart is pounding. The nurse accessed my port, put on gloves and a gown to hang my IV bag. I started to cry and looked at the older lady next to me. She said, “don’t worry honey it gets easier, I promise.”
She was right. It did get easier mentally each time because I knew what to expect after the first one. Physically was a different story. It wasn’t until I was halfway through my treatments that my hair started to fall out. I would wake up with clumps of hair on my pillow. I tried to hide it at first but it got to the point where I could no longer hide it. I would look in the mirror and couldn’t recognize the person staring back at me. Hair falling out, no eyebrows or eyelashes. My face was round and flushed from the steroids. This was the first time I realized I looked like a “cancer patient”. Now every time I went out in public people would know. People know when your bald and wearing a scarf chances are you have cancer. I would always have people stop and ask if they could pray for me. I hated the attention, not the prayers but the attention. All I wanted was to be normal.
About two months after that I finished my chemos. I received the best news of my life. I was in remission! I cried like a baby I was so happy. I had a new lease on life and I was ready to get back to normal. I can put this behind me and move on. Well, that was short-lived.
About a year or so later I had a scan that reviled cancer had returned. My whole world came to a screeching halt. I was numb as I drove to the doctor's office to hear what my treatment plan would be. How could this happen? I already did chemo. Why is it back? I was told I was going to have to have chemo again only this time it wasn’t going to be as “easy” as the first time. Instead of four-hour chemos I would have to have 4 day long chemos in the hospital. This would last for 4 months. Then, after that, I would have to have a stem cell transplant. I couldn’t even process the information I was given. How am I supposed to handle 4 day long chemos let alone a stem cell transplant? I was scared to death.
I made it through the four months of chemo. I lost all my hair again. My days were filled with dr appointments and blood work. My life was consumed with cancer. I couldn’t escape it no matter how hard I tried. I was starting to forget what normal life was like.
It was time to head to the University of Florida for my stem cell transplant. I had to have a scan first. They needed me in remission or as close to remission as possible in order to have the transplant. I was praying the whole way there for a good result. Once we arrived I was taken back for the scan. During the scan, I was crying the entire time. I just needed a good result so I could have the transplant and move on with my life. After I was finished I was told to go have lunch by the time I got back the results should be ready.
I was sitting in a small room with a round table. The door was closed and I was waiting for the doctor to come in. My heart was pounding and my palms were sweating. My eyes were filled with tears. My mom grabbed my hand. I could hear footsteps outside the door. I knew the doctor was about to come in. He knocked and open the door. He sat down, opened his folder, and pulled out my scan. He looked at it and was quiet. That’s when he told me my cancer had spread and I wasn’t able to have the stem cell transplant. “You’re not close enough to remission” we have to come up with another game plan. The chemo didn’t work. Where going to have to see another doctor about a clinical trial medication we think might work. He left the room and closed the door. My mom and I were left sitting there silent. We didn’t say one word. That was the first time I truly thought I was going to die. Clinical trial? That must mean I’m running out of options. I’m too young to die. This can’t be happening. I have a son who needs me and I just got married to someone who is so amazing that words can’t describe what he means to me. I called my husband to tell him my cancer had spread. I told him I can’t do this anymore. I feel like it’s hopeless. I can’t handle anymore chemo. I’m tired of being consumed by this ugly disease. This is no way to live. We both cried and cried. He told me we’re not giving up. We’re never going to give up no matter what. We do this together. Do you hear me? We do this together.
I met with my oncologist and the lymphoma specialist. They came up a new plan. I went on a clinical trial medication. It wasn’t nearly as bad as chemo and I didn’t lose my hair. I had my doubts because it seemed too good to be true. But I had no other choice at this point. Chemo didn’t work and if I wanted to live I had to trust and give this a chance. Well, it worked and in a few months, I was in remission and was ready to go back to the University of Florida for my stem cell transplant. I had no idea what I was in store for.
The hospital was about 2 hours from my house. I was told once I have the transplant I’ll be in the hospital for about 3-4 weeks. It was scheduled for January 17th. I had to go up there two weeks early for testing and to sign consents. They tested everything, The strength of my lungs, heart, liver, kidneys, and 2 days' worth of blood work. I had to sit and sign consents for what seemed like hours. I was told numerous times that I would have to get used to my “new normal” and I would have limitations. I just wanted to scream at the top of my lungs. I thought to myself “I’ll be dammed if I’m going to have a “new normal.”
The next step was that I had to have 5 days worth of Neupogen shots twice a day. (it helps the body produce white blood cells) it causes extreme bone pain because white blood cells are produced in the bone. They needed a certain amount of white blood cells for the collection process. They were using my own stem cells for the transplant. I didn’t have to have a donor. I couldn’t even walk after the fifth day it was so painful. It was excruciating, to say the least.
Now, it was time to receive 5 days worth of chemotherapy. I was told they were going to wipe out my system so they could give me my stem cells back. Nothing could have prepared me for what I was about to experience. They give you just the right amount of chemo to not kill you, but bring you right to that edge. They put an alarm on my bed Incase I fell out or tried to get up. I wasn’t permitted to get up by myself. I’ll never forget that night. That was the night I hit my rock bottom. I was so weak I could hardly talk. I started to hallucinate. I was crying, praying to die. I can’t do this anymore. I’m done. This is no way to live. My husband was sleeping on the couch next to me. I kept trying to call his name but nothing was coming out. I could feel myself slipping. He eventually woke up and got into bed with me. I was crying and told him I just want to die. I looked at him and said “I’m not afraid to die, I’m afraid to live” I can’t live like this. He held me tight and we both cried. He told me we’re not giving up no matter what. We fight this fight together.
The next morning it was like someone flipped a switch. I had new found strength and got out of bed and walked. I was weak and had to hold onto my husband but I did it. Each day got a little better and they even put an exercise bike in my room. I made myself get on it every day. I was out of the hospital in 2 weeks. Much earlier than they had predicted. I couldn’t wait to get home and get back to living life. I missed my home and family so much it hurt. All I wanted was a normal life. I remember looking in the mirror and horrified by the reflection. Who is this person? Bald, pale, dark circles around my eyes. I could hardly eat. The nausea was awful. Is this my new normal they warned me about? I couldn’t leave the house without a mask and my Lysol wipes. The transplant wiped out my immune system along with all my vaccinations from childhood. My immune system was like a newborn baby at this point. I had to be extremely careful not to get sick. I was going crazy being in the house all the time. Depression was setting in big time and I needed to do something about it. I needed an “outlet” I needed something to get me stronger mentally and physically. Against doctors' orders I joined the gym. The gym has always been a huge part of my life. It was always my therapy. I missed it so much. I felt like I was going insane without it. I needed normalcy.
So, I walked into the gym, bald, Lysol wipes in had and a mask. The first day I couldn’t walk on the treadmill for more than 10 minutes and at a VERY slow pace. Every day my husband and I went to the gym and did whatever I could do. Before I knew it my hair was growing back and I was getting stronger. I could slowly see the old Nicole coming back. I hadn’t seen her in a while and it felt so good to get reacquainted. I can finally close this chapter and put everything behind me or so I thought.
About four months later I was at the gym and I just happened to rub my neck and I felt a swollen lymph node. My whole world came crashing down because I knew cancer had returned. I cried the whole way home and called the doctor. I had to have a scan and it confirmed what I already knew. I was numb. Could this happen? I was told the stem cell transplant was what I needed. It didn’t work. I went through hell and it didn’t work. I couldn’t even wrap my head around what was going on. All the chemo and clinical trial drugs and nothing worked.....nothing. I couldn’t even begin to imagine what kind of poison they were going to give me next. My body had been through so much. How much more can the human body take?
Driving to the doctor's office to hear the treatment plan scared me to death. What if they tell me I’m out of options? Am I going to die? Was all this for nothing?
I was told they were going to put me on a drug called keytruda. Since chemo clearly wasn’t working for me and the transplant didn’t work, we needed to try something different. Normally this drug is used for lung cancer. At the time it had just been approved for Hodgkin’s lymphoma. I was told it would be much easier than chemo. I wouldn’t lose my hair again. I had already lost it 3 times by this point. I couldn’t take another time. I had my doubts that it was going to work. I asked about radiation and was told I wasn’t a candidate. It wouldn’t work for my type of cancer.
A few months later I had a scan and found out I was in remission. The drug worked!! The doctor said I would have to stay on this drug forever because of my 3 relapses. They didn’t have any studies at the time of people coming off of it that had Hodgkin’s lymphoma. So we were going to play it safe and continue to take it. At first, I was fine with it, but then the drug started to take a toll on me. I was achy and didn’t feel like myself. I felt “off” all the time. I asked my doctor about radiation again. I was desperate to do anything to get off this medication. Again, I was told no. I was talking to my mom about it and started crying. She did some research and found out I was absolutely a candidate for proton therapy. We called the proton center and made an appointment. After meeting with the doctor he told me I should have had this years ago back when I was first diagnosed. I started my treatments two weeks later. 26 rounds of radiation to the neck and chest. It looked like I had a severe burn. I couldn’t eat towards the end I was so badly burned. I would cry at night because I couldn’t sleep it hurt so bad. My husband would have to constantly rub burn cream on me. I wanted so badly to quit, but the fear of cancer coming back scared the hell outta me. I had the keep going. I just had to.
I have been cancer free since 2017! I am the strongest mentally and physically I have ever been in my entire life. Life is short and everything in life is temporary. If you’re struggling on your own journey just remember to keep pushing and it will pass. Without the bad, we don’t fully appreciate the good. I used to be angry this happened to me. I had to let that go and realize this journey has changed me in every way possible. I’m proud of my story. Never give up