“‘I really think you should go to the ER,’ my best friend said as I held my lower back and winced in pain. It was a Monday, December 11th, 2017, we were at work and it was toward the end of the day. I was always in some sort of pain, so it wasn’t unusual for me to be complaining about something to her, but this time I think she knew it was different. For me to even consider the emergency room meant something had to be seriously wrong. In the past, I had two serious foot surgeries with many complications along the way, so I was no stranger to severe pain. If I was sitting there, on the verge of tears, then a trip to the hospital was absolutely necessary. We left at 4:00 PM, drove separate cars because I thought it would be a quick trip and they would just send me home. ‘Kidney stones,’ I thought, just some kidney stones. A quick scan, morphine and some rest and then I would be on my way. No need for her to drive me and then have to drive back downtown. A quick trip. I was wrong.
I didn’t have to wait very long to get called back and get into a bed. The hospital was so crowded because the flu season was at its peak. I remember staying as far away from others as possible when I was walking through the doors to get to the ‘room,’ which was only a bed with lots of machines around it and a curtain for as little privacy as possible. A nurse came in, got my vitals, asked what the problem was and then attempted an IV for fluids and pain management. I had always been a hard stick because of my small veins, so I warned her that it was going to be difficult. Of course I was right, she tried twice and failed. A nurse that was obviously higher up in the food chain came in, got the IV in with ease, and soon I was laughing, delirious from morphine and waiting to be wheeled back for a scan which I was sure to reveal kidney stones. Ashley, my best friend and co-worker, had kidney stones constantly and she did her best to assure me that is what the issue was, even though she was unsure herself.
I’ll never forget his name, Brian. The main nurse I had for the first 6 hours of my ER visit. After my first scan, Brian came to the bed with a look on his face that I couldn’t quite understand. He said, ‘We need to do another scan, this time one of your chest.’ I honestly didn’t think anything of it. It could have been the pain medicine, or the fact that every time I had seen a doctor for any kind of issue, they would always turn me away and say there was nothing wrong with me. That’s what would happen this time, I was sure of it. Might as well enjoy the morphine while I can. Five hours, two CT scans and a lot of drugs later, Ashley was basically falling asleep in the chair next to me. Every now and then, a new nurse came in to take my vitals. There were EMTs training that night, so every person that would come in would ask me the same questions over and over again, ‘What pain are you experiencing? How long has this been going on? Have you been out of the country recently?’ etc, etc. I just let them do what they needed to do and then they would leave, never to be seen again. I thought another one was walking in at 11 PM, but instead it was the head of the emergency department. I don’t remember her name, but I will never forget her face. She got a chair and sat down next to the bed. Ashley told me months later that she knew at that moment, we were going to get some bad news. She said, ‘We are admitting you to the hospital. You don’t have kidney stones, but you do have some abnormalities in your chest and abdomen, and your lymph nodes are pretty swollen. We need to run some additional tests.’ It still didn’t register with me that something could be seriously wrong. Ashley knew, but I guess I was too high on pain medicine to get a grasp on the situation.
Since it was 11 PM, I sent her home and called my good friend and ex-future-mother-in-law, Sherrie. My mom had strep throat so I didn’t want her to come to the hospital while she was sick, besides, the hospital was 100% full because of the flu so I had to sleep in the emergency room. Sherrie insisted on coming, even though that when I called, it wasn’t my intention for her to come up there. She was there in record time and we stayed up the entire night, talking, laughing, and arguing with nurses because they wouldn’t let me eat or drink. It was so loud because there were so many people there. We couldn’t sleep if we wanted to. I think she knew something was very wrong, and on some level maybe I did too, but we didn’t talk about it. We just sat there and waited until morning.
My mom was there at 7 AM sharp. It didn’t matter to her that she was sick, she was going to get me out of that emergency room and get me into a real hospital room. She relieved Sherrie of her visiting duty, and went to go find someone that would tell us what the hell was going on and get me a room. They gave us a room alright, more like a closet which was still technically in the emergency room, but it had a door so that was good enough for me. Next step was to get someone in there who would actually give us a clue as to why I was still there, and for the love of God, get me some water and let me eat. I can’t remember the name of the doctor, I’ve had way too many to count since then, but he was an infectious disease doctor and he was the first one to really give us a hint as to what was happening. He said, ‘We are figuring out what tests to run, because your lymph nodes are swollen, the first thing we look for is Lymphoma.’ I think I laughed out loud when he said that. Me? Cancer? I was 25. No way. My mom looked like she was going to pass out. He said a few other things, the only thing I can remember is him saying that I could eat. I ordered a pizza from the cafeteria, which was way better than expected, while my mom went outside and made some phone calls. She always overreacted, so I told her to not panic and not tell a bunch of people something that isn’t true. It just didn’t make sense, and I just wasn’t buying it.
Alas, a real room. After being awake a full 36 hours, I was finally going to get my own room. They said it was on the 6th floor, which of course meant nothing to me. I didn’t pay attention to what floor was what, I just wanted some peace and quiet so I could finally get some sleep. The next few days were a blur of tests, dilaudid and waiting. I had so many doctors come in, do their tests, and then leave. Specialist after specialist. I was still in severe pain, had a high fever that wouldn’t go away, and unusual vitals. I remember being so worried about the work I was missing because I had just been promoted to an Account Manager. Looking back now I realize how absolutely ridiculous that was, but that is one of the main things I remember about the whole ordeal.
Three days in, I had a needle biopsy in my back. It came back with non-conclusive results, so it was back to square one. It had been five days and I was getting really fed up with being there. An oncologist came in, Dr. Jennifer Wright. She was very nice, brunette and just by looking at her I knew she was very smart. She said the next step would be to do a biopsy of a few of my lymph nodes in my stomach. This would be an actual surgery this time, and the recovery would be hard, but it was the only way to get to the bottom of this. I agreed, and it was scheduled a couple of days later, December 18th. This is when things get really fuzzy. I only remember bits and pieces after the surgery. I remember a few friends and family members coming to visit, Ashley cutting up a cheeseburger for me with a knife and fork because I couldn’t pick it up with both hands, and the thought of how bad I wanted to shower. I was sick, nauseous and in awful pain that is unexplainable. There was one night that I called a nurse in to give me oxygen because I was hyperventilating in pain. They made me walk up and down the halls every chance they could to try to get my energy up. I hated them for it, but I knew it was necessary. I had lost so much weight, and Ashley told me several months later that one day when she walked in to visit, she looked at me and because of my appearance, thought I was going to die. Ashley was a big part of helping me stay alive during that time, but my mom was really the only reason I survived those two weeks in the hospital. She did absolutely everything for me and more, even though she had to be so scared. Her own daughter, in the hospital, on the 6th floor. The cancer floor.
I barely remember anything about Christmas Day. I was released the day before, even though I was in so much pain, I was determined to not be in that hospital on Christmas. I recall being extremely distraught on Christmas because I didn’t have a chance to get anyone any gifts due to the unexpected health crisis, that mixed with unbearable pain did not make for a good holiday. We were waiting on the results of the biopsy, they had to send them to the Mayo Clinic in Florida to be evaluated. Dr. Wright was on vacation and it was the holidays, so we were not expecting results when I had a follow up to check on my biopsy incisions on December 28th, 2017. It was 20 degrees outside that morning, raining and really windy. I remember my mom helping me get dressed for the cold because I was too sick to dress myself. It was an hour drive to Texas Oncology, I remember walking in very slowly because it hurt so bad to move. I remember what I was wearing and how out of place I felt when we sat down in the waiting room. It was full of older people, mainly in their senior years, and they all looked very sick. I just wanted them to make sure my stitches weren’t infected and to get the hell out of there.
I was sitting in a small patient room with my mom, waiting for the nurse to come back. My vitals were elevated, again, so she went to go ask the doctor what steps we needed to take. Suddenly, she runs into the room and says she needs my cell phone number. I looked to my mom and she looked at me and without saying anything at all, her face told me that she knew. My doctor was calling from out of state, she was enjoying her holiday vacation but she knew that we would want the news as soon as possible. The results from the Mayo Clinic were in, and I had cancer – Hodgkin’s Lymphoma, specifically. Neither of us had a reaction, I’m not sure if we were in shock or if we were just listening to everything that the doctor had to say.
I had to have several tests done to see if my body could handle the chemo, a PET scan to evaluate the ‘staging,’ a bone marrow biopsy and I had to get a port placed. All of this had to be done within two weeks because the doctor was afraid that my time could be limited if we didn’t act quickly. I would start getting phone calls to schedule these appointments ASAP, then as soon as those were all complete, I would need to do a ‘chemo teach’ session with her nurse, then start six months of chemo. The first words that came out of my mouth were, ‘so is all of my hair going to fall out?’ Dr. Wright paused and said that it unfortunately would. She said a few more things that I don’t recall, said she was sorry to do this over the phone, then we hung up. The nurse left to go get some paperwork so my mom and I sat in that cold, small waiting room in silence. The first thing I did was call Ashley, which looking back now I realize was so selfish of me because she was at work and I remember her trying to hide from me her sobs.
When my mom and I left, somehow I was hungry so we went to Wendy’s and grabbed some food. I remember wondering why nothing felt different, why didn’t I feel sad? Why does everything seem normal? We drove home in silence, but my head was spinning with thoughts on how to break the news to my dad, sister and close friends. I told my dad when we got back to the house, saying only the words, ‘I have cancer,’ because I didn’t know what else to do. My dad is a very sensitive man and I knew he would be extremely upset. He was, but I know he was probably more in denial than I was. Next I told my sister, my three year old twin nephews by her side, and she could only stare at me with tears rolling down her cheeks. Everyone had so many questions that I just couldn’t answer. I didn’t even know how advanced it was, all that I knew was that I had cancer and I was scared.
The PET scan determined the stage of the Lymphoma, stage IV. In case you aren’t familiar, that isn’t good. It was in my stomach, chest, in the lymph nodes under my arms and my spleen and spreading fast. People asked me how I didn’t notice the symptoms, and that is because I didn’t know what the symptoms were. Everyone assumes that you’ll just get tired and start throwing up or find a big lump and that just isn’t the case. Once I found out the symptoms of Hodgkin’s Lymphoma, it was very obvious that I had been suffering for over a year. I had chest pains, extreme fatigue, very bad pain in my lower back, an intolerance for alcohol and unbelievable itching on my legs. I couldn’t believe the doctor when she said the itching was a symptom. I literally thought I was going insane for months because I would scratch my legs until they bled, but there were no bites, no allergies, nothing. How does that even make sense? Regardless, I didn’t have a clue until it was nearly end stage. I will spare you the details of the bone marrow biopsy, but it was the most painful thing I have ever endured in my life. Thankfully, it found no Lymphoma in my bone marrow so that meant I had a fighting chance. I had my port put in two days later, which came with its own horrible pain. The next week after that I was miserable, sick, tired, in so much pain and so confused about life and why this had to happen. I could only shower every four days or so because it hurt that bad to get up and use that much energy. My oncologist let me recover for a week, then had me start chemotherapy which was every other Thursday for six months straight.
My chemo was called ABVD, four drugs, each with their own dangerous side effects. On my chemo days I would get there at 7:45 and I wouldn’t be finished until around 2:30 or so. After blood work and a visit with the doctor, I would be taken into the infusion room and hooked up to several different drips of medication. I was never alone on my chemo days, every time I brought with me either a relative or close friend who could keep me company for all of those hours. I had the same nurse every time, her name was Leigh and she would keep me in high spirits. Usually after chemo, I would go back to my parent’s house, sleep for a few hours, then wake up really nauseous and be in a lot of pain. Somehow I would always wake up and go to work the next day, yes, I worked the entire time I was receiving chemo. The only days I took off were the actual infusions days. People thought I was crazy, but it was something that I felt like I had to do. Usually by Saturday, I would get ‘fuzzy’ is what I would call it, I would feel almost incoherent and everything was always really blurry and I would just sleep and sleep because I was so tired. Monday and Tuesday were usually fuzzy as well, but it would at least be a little better by then. Dry mouth would kick in, and I wouldn’t be able to eat hardly anything between my tongue being raw and my throat being swollen shut. After my second chemo, the majority of my hair fell out and I had Ashley buzz the rest of it off. To say that experience was traumatizing would be an understatement, and I can remember even know how I felt sitting there as she was doing it. You feel hopeless, hideous, worthless, and like you’ll never know what it’s like to feel normal again. Little did I know, that was only the beginning of the journey.
When I went to my third chemo session, I told Dr. Wright that my right lung was hurting and something definitely wasn’t right. One of the drugs in the chemo had a risk of lung damage, so she ordered a CT for that Monday coming up and told me to take it easy. Monday rolls around, I get scanned and find out that I have a pulmonary embolism (blood clot) in my right lung and was told I needed to get to a hospital immediately. If I wouldn’t have had that scan, they said that clot most definitely could have killed me. I stayed the night in the hospital once more, then had to learn how to give myself blood thinner shots in my stomach twice a day so I wouldn’t get another clot. That was definitely not an easy task and probably one of the worst parts of the entire thing. I had to do the shots for a long six months after that happened, which caused huge whelps, knots and bruises on my stomach that were so painful and ugly. It just added to the horribleness of what my life had become. Any side effect that I could have gotten during chemo, no matter how rare, I had it. One night I even went into neutropenic fever and had to be admitted to the hospital. When you are doing chemo, your immune system is non-existent and even a small cold can kill you. I had a sinus infection with a fever of 103, (they warn you that it should never go over 100.5 during treatment) mixed with hallucinations and unbelievable pain. That was one of the moments I thought I might not make it out of this thing alive. After antibiotics in the hospital, I was ‘better’ and on to the next crazy side effect to overcome.
After six months of chemo, I was declared ‘in remission’ or at least that is what my doctor’s opinion was. There was still active cancer on the scans, but Dr. Wright insists that it is nothing to worry about and the stuff lighting up in the images could just be scar tissue. Everyone was so happy that I was finished, except me. I felt nothing close to being happy, I felt more depressed than ever. I didn’t understand why I felt this way, I should be screaming from the rooftops! Dr. Wright warned me that most cancer patients get depressed after treatment, not during. This is because when you are battling the cancer, you really don’t think about what you are dealing with. You are just focusing all of your energy on staying alive and it doesn’t actually hit you until it’s over. Everything that I lost, everything that I had gone through and the realization of everything hit me like a ton of bricks. Not to mention the after effects of chemo did not make my life easier by any means. I was so sad, and no one could understand why. How could they? They will most likely never have to deal with anything like I had dealt with, especially at an age when you are supposed to be living your life and figuring everything out. I had lost that time, and now I was a sickly, bald, super sensitive 26 year old that had a lot of baggage. I felt hopeless, and that I would never feel like myself, ever again.
‘Aren’t you in remission? Isn’t everything back to normal? You should be better right?’ These things I hear constantly, and they make me want to rip out the little hair I have left. Life doesn’t just go back to the way it was before cancer. My eyesight is forever changed, I have permanent lung damage that makes it painful and difficult to breathe, I have issues with my nerves that are not only painful but they make some every day activities extremely challenging, and countless other things that I won’t waste your time with. Every day I have extreme pain that I just live with that no one can see and no one will ever understand. It makes life difficult it more ways than you would think. It affects my everyday life constantly, most of the time negatively. The sympathy I have for other people is extremely thin. If someone is complaining because they have a small cold and they are acting like it is the end of the world, it makes me more mad than I’d like to admit. If someone calls into work because they have a headache, when I would literally come to work the day after chemo, it is infuriating to me. But I know it isn’t their fault that I have been through such awful days that they could never understand. The reality is, is that there is not enough awareness out there for the PTSD that you get from going through cancer. If more people knew that it isn’t rainbows and roses when you’re in remission, maybe they would cut me a little slack when I am still exhausted from walking up stairs or I still hurt too bad to go out and have fun. That is something that I am determined to change, to make people understand that just because it’s ‘over’ doesn’t mean that it is over.
I am committed to fighting with everything that I have until I can one day feel normal again. Helping others my age who are going through the same thing is extremely important to me because being 25 and diagnosed with stage 4 cancer is not a common thing, and it is very hard to find support out there. I wish I could say that I am thriving in remission, but that just isn’t the case. However I am blessed to be alive today, which I can say for sure.
There were many moments that I thought it was the end for me, but God had a different plan and I know he wants me to be here for a reason. Possibly to give others hope, or to try to educate everyone about how hard life is post-chemo. I refuse to let people tell me that I am ‘milking’ a situation, when 12 months ago I was barely living, holding on for dear life. That is what I will continue to do, hold on as hard as I can and live life the best that I can, with the people that stood by me and still continue to stand by me. I will do it for me, and I will do it for them.”
This story was submitted to Love What Matters by Macy Mullen of Austin, Texas. 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.
Read more powerful stories like this:
Spread strength and encouragement for others. SHARE this story on Facebook with friends and family.