Paul's Heart

Stephanie’s Words

Today is the final day of National Lymphoma Month. But for those of us who have battled lymphoma, every day will always be Lymphoma Month, because we have to live with it every day, even after the treatment ends.

My final post of September in recognition of NLM, I wanted to share with you one of the most inspirational stories I have ever heard. I am going to “split” this post with her original words and my commentary.

I first learned about Stephanie from her mother who had learned about me from a lymphoma support web site. Of course, I will always believe that some of the most important support you will have when facing any cancer, is the support from family. There will never be stronger support, than from that of a mother. That being said, when her mother had reached out to me, Stephanie had already completed her treatment, but was struggling getting back to living life. That is all I knew of Stephanie at that point and I encouraged the mother to contact me. After all, who knows more about surviving cancer than someone who has done it for decades?

Soon after that, I heard from Stephanie. And while we did not really discuss her days fighting Hodgkin’s Lymphoma, we did talk about her emotions and struggles with getting back to a “new normal”.

I have known of Stephanie for well over a year now, following her survival, her advocacy, and her “new normal” as she has moved forward with determination as she returned to college to become a respiratory therapist, quite appropriate for her. I am proud to know Stephanie and her family. And I hope as you read, from Stephanie’s own words, that what was once a horrific and challenging fight with cancer, you will be inspired to overcome any obstacle, cancer or not, and to never give up hope.

I give you, “Stephanie’s Words.”

I was a sophomore in college at West Chester University and was 19 years old when I found out. I remember that summer before school even started in 2011, I had started to get deep coughs constantly and summer colds I guess you could call it, and went to the doctors at least three times only to be diagnosed with like I said a cold or bronchitis and loaded with antibiotics that barely phased me.

I went along to school and forced myself out of bed for each class because I was determined to succeed this semester.

But each day was getting harder and harder to focus and go to class. I was still coughing, I couldn’t sleep, heart was constantly racing, I couldn’t breathe right walking to class, I had terrible night sweats for some odd reason because me and my roommate made sure our rooms were a cold temperature every night, and a rash all over my stomach that I swore was bed bugs. Creeped me the hell out! Also, sleeping at night on my back felt like I was suffocating. My heart would race fast  constantly. I went to the health center at my college 7 damn times. 7 times. Of course again, I had bronchitis or and allergic reaction to something, they told me. I was once again loaded up with antibiotics. It wasn’t bed bugs by the way…

There was one point where I couldn’t even stand in the bathroom to do simple things as brushing my teeth or doing my make up. I couldn’t stand for more than 2 minutes without feeling tired.

I developed a few different skin irritations, which consisted of a yeast infection on my leg and ring worm on my arm. We thought (and doctors confirmed) that this was an allergic reaction to laundry detergents or something in my college dorm. I was, after all, a typical college student, living in the dorms, with every other typical college student from all over.

I started losing weight, I didn’t eat normally. I was getting weaker and weaker each day and started not caring about classes anymore and just rather lay in bed then go anywhere. I had to force myself to go out with my friends to keep maintaining a social life. I thought I was just out of shape to be honest. I remember asking my sister to help me work out but I had so much trouble breathing, I just couldn’t bring myself to go to the school gym anymore.

Winter break comes along finally and I get to go home and relax for a month. A couple days into break I realize I am really not okay and finally go to the hospital.

Me and my mom went to just get examined and get the hell out of there, but obviously that wasn’t the case. The X-ray revealed a mass that spread approximately 18-20 cm across my entire chest and into my shoulders. One doctor stated, “I’ve never seen anything this massive before.” My family’s world completely stopped as we all struggled to grasp the news.

I was completely frozen from that point on. I remember them talking, my mom crying with black mascara down her face, the doctors asking if I’d like to see what the x-ray looked like and me responding with ‘no’ because I was so scared to face reality.

I was admitted and the hospital ran more tests to identify the nature of the mass. A thyroid issue? Lymphoma? Something else? We didn’t know for sure, but deep down inside our hearts, we knew it was cancer.

I ended up getting transferred to University of Penn Hospital, which I might add is a wonderful hospital. I got my biopsy there the next day. I died on the table, they brought me back. There were complications during the biopsy due to the size of the tumor and the pressure on my airways and that I was put in the Intensive Care Unit (ICU) on life support.

Next thing I remember waking up to a tube shoved in the middle of my throat and being highly medicated.

I was there for four months after that. I was on an ECMO machine, a ventilator, emergency radiation, a medicated coma, then chemo, then blood clots in my ribs from too much heparin then given lasics, a bed sore, I couldn’t walk, couldn’t go to the bathroom normally, I had pneumonia so many times, My hair was falling out so much I eventually had to shave it, and I was throwing up and drugged up so much you wouldn’t believe it. I’m sure I had more problems, but it all seems like a blur now that I am reminiscing. I mean you’re reading this from a girl that was so drugged up and delusional that I was afraid of the computer screens in my room in the ICU. Apparently I was a tad bit nutty. Oh did I mention no food or water for two months? Two months. They placed a feeding tube in my stomach to survive. They gave me mouth swabs every time my mouth was dry. I remember a nurse left a damp rag near me and I grabbed it to try to suck every last drop of water from that towel to get a least a little satisfaction. She wasn’t too pleased with me after that…

Before I had the feeding tube through my stomach, they were trying to put a feeding tube through my nose to my stomach. I remember the doctor had failed three times to get it in the right spot and the process was so uncomfortable I had tears in my eyes the whole time. After the third time, I was fed up. I wanted to hit the doctor and tell him to leave me alone. So that’s when they decided on putting the tube through my stomach.

I had a stent and tracheotomy surgeries to try to open up my airways, but was still unable to breathe on my own and was on a ventilator, unable to speak so I mouthed words and phrases. Recently, the doctors have discovered fistulas on my trachea. They realized that when the chemotherapy did its job and shrunk the tumor, it also caused the tumor to rip 2 holes out of my trachea. This makes me susceptible to even more infections while I continued with chemotherapy and with the hope is that it will eventually repair itself, as there is currently no medical solution to correct the holes. The doctors at University of Pennsylvania Hospital have been researching cases like this in the US and around the world, and have never seen anything like this before. This made their decisions in treating me even harder to make.

When I was put in a coma, they didn’t move me as much as I was supposed to. When I woke up, I had a huge disgusting bed sore on my butt and dropped foot on my left foot. I felt the numbness starting in my right foot as well at the time but the more I moved around it went away, in my right foot at least.

I was forced to get up out of bed for physical therapy. Can you imagine just walking 5 feet and have to sit down because you’re tired?? Yeah, that was me. It was very depressing. I gave those nurses such a hard time for having to get up, but it was such a damn struggle all I wanted to do was rest and be left alone. I quickly learned if I wanted out, I gotta do what they say whether I like it or not.

I remember the most anxiety I had was weaning me off the ventilator. I relied on that to help me breathe everyday and the first time I got off it was such a struggle breathing on my own. Learning to breathe to keep my body going sounds so ridiculous now but it was no joke on how scared I was. They would put the oxygen lower and lower trying to trick me and I knew it every time. I’d yell at them to stop because I felt I wasn’t ready but obviously I had no choice.

You know, hospital life wasn’t so bad sometimes. I mean I couldn’t go anywhere so I was forced to make the best of it. I made a lot of friends. The nurses were my supporters. The doctors were my supporters. I was the best case they’ve ever seen and I felt pretty special every time I heard I was making progress. Anyone would feel that way but you could actually see how much they care for their patients and it makes me smile. I heard their life stories, I even gave my own advice to them. The nurses were my main buddies. I will always love them. They dealt with me and my crazy Italian family? Seriously, kudos to you guys because I can barely take them sometimes!

Around my birthday in March I passed the test to eat! Happiest day of my life! My dad ran out to get my favorite deserts from my favorite bakery, Isgros, and when he presented them to me, I didn’t want it. I was so upset. It was my chemo week and I didn’t want anything. I felt like I disappointed him.

You know what I wanted? Orange juice and ‘cutie’ oranges. How strange right? For not eating or drinking for so long, you certainly watch a lot of TV to pass the days right? Well every damn commercial was either orange juice or cuties. I drooled every day watching and craving it so bad. That first drink was the sweetest pleasure I have ever had. No lie!

I feel like living in the hospital strips your dignity in a way though. You can not make your own decisions. You are literally relying on people you barely know to make you better. I think that was the worst thing about being there. I had no voice. I couldn’t wash myself, go to the bathroom with out a bed pan, drink, eat, sleep without someone coming in the room or the machines constantly beeping, forced to go through every chemo, every walk, every surgery. I think my whole family saw me naked several times, not to mention the nurses and doctors. I had no choice.

Around Easter, I remember I wore my first wig. My mom came in and did my make up and dressed me up in my best sweats and T-shirt. Haha then she would leave to go get my grandparents to have Easter dinner with me. My father showed up in the meantime and brought Easter bread, which I loved so so much. But anyway, I had to do my daily walks around the floor and my dad walked with me. Before we walked out, I noticed my oxygen wasn’t on so I thought I could bend down and fix it. Apparently being 90 pounds and having weak legs isn’t a good thing when you want to bend down. I remember I went down and I had to grip my walker real quick from falling, so as I’m struggling to bring myself up, my trachea voice cap fell out so I couldn’t yell at my dad for help and he didn’t realize till the last minute that I was struggling because my wig was covering my whole face.  The nurses at the desk ran in the room and caught me and it turns out I sprained my foot. My bad foot. Just my luck and on Easter. Later on I ate delicious food and then threw it all up in front of my family. Very embarrassing.

I think I lived off of Boston Market from my dad majority of the time. I thought it was awesome. My sisters didn’t approve but I was a 90 pound girl and need some meat on my bones.

I actually made friends within and outside the hospital with fellow cancer patients. That helped me get by knowing I wasn’t alone. I was the youngest patient in the MICU and that didn’t help too much to boost my confidence.

When I was finally moved to the ‘healthier side’ of the building in Rhodes 5, that was the highlight of my life. I was finally moving forward and away from the MICU.  I had more freedom to move around! I actually had my family take me outside in a wheelchair to breathe I the fresh air and the sun on my face. It was cold out but god, if felt so amazing.

When I finally was given the chance to finally go home in the middle of April, I was so incredibly happy, but I also had a major fear of my own home. If I were to slip and fall, I’d be done for. My body was still thin and frail, I could seriously harm myself. We decided to get a bed in the middle of my living room since I couldn’t walk up the stairs too well. I had Penn Home Infusion come over to change my dressings on my arm once a week and to take blood. And then a nurse would come in two times a week to check on me and my bed sore.

I spent a week home and then went in to get chemo for three days. I couldn’t wait to get back home right after I was done my third day so I had my dad pick me up. That night the chemo finally hit me and I threw up and never stopped throwing up till morning. We had to get a nurse to come and help us set up liquid Zofran to help me with the nausea. She didn’t like that my pulse was so weak and told my mom to immediately send me back to the ER. Everything I drank, ate, smelled, was making me throw up over and over again. So that was my first trip back to the ER while being home. I spent a couple more days in the hospital until I was free of nausea. That was the worst time going back. I threw up in the waiting room, in the hallway because they were too full of beds, then consistently in the room and finally in my room in the hospital.

When I returned home I was back at watching TV and continually eating more. I’d get chemo again and then go home, thinking I’d be fine again now that we had a full supply of liquid Zofran. I was wrong. I had another trip to the ER not as bad as the first time though. I waited it out there and then was discharged home.

Bathing at home was a challenge. I had to go up 15 steps to get to the tub and then get into the tub without slipping and sit on a stool on a rubber mat to wash myself. It was embarrassing to have my mom sit there and wash me because I was unable to do so myself. I couldn’t dress myself after either. I needed help with just about everything besides going to the bathroom.

When I was getting healthier, I was told my a friend of the family that she raised money for me to get a real haired wig in Cherry hill. Dyed to my liking and all. I cried. I finally looked a little more like my old self.

After that, I went to the movies for the first time with my two girl friends. We saw ‘The lucky one’. I was embarrassed half the time though because I kept coughing every so often and get pop corn stuck in my throat.

I was the due for another chemo and stayed in the hospital this time and there and had the chance to get my feeding tube from my stomach removed. Now I may have went through a lot of things, but to rip that feeding tube out if my stomach with no medicine to calm me down, really pissed me off. It was literally a plunger in my stomach. I cried for 45 minutes after he pulled it because I was in such shock and pain. My father was laughing at me. I’ll never forget it till the day I die. He would laugh and I just kept getting emotional over and over again. After I calmed down, they removed the trachea tube from my throat. Which I was thanking god, that it wasn’t painful at all.

A couple weeks after that, I went to a graduation party for my friends brother and actually met the guy I’m dating now! I remember telling him that my name is Stephanie and I blurted out that I had cancer. He wasn’t phased a bit. He had his issues in the hospital from a car accident 6 years ago, so we had a couple similarities, one being that we are both miracles.

In July, the words I was waiting FOREVER to hear, was that I was finally in remission!!!!! Cancer free, tumor dead, but still unfortunately in my chest.

So the next step was to collect my stem cells in case the cancer did come back, I’d use them and go through a high dose chemo and be in the hospital for a couple weeks.

After that, radiation. Now the whole process of radiation was very difficult for me. I was in a cold room, topless, and forced to wear a hard mask for 45 minutes and to not move an inch. Every single day for a month. It was absolute torture. I cried so many times because all I wanted to do was move that stupid mask off my face that kept me secured to a cold hard table. I had good days, I had bad days in there. On a good day, I was in and out and no waiting turns for the beam. On a bad day, the beam was in another room and I had to wait longer. I’d fidget, move around and then they’d have to reposition me which made me lay longer with the mask on. It was extremely difficult sometimes.

So after radiation was done on my last day, I had a proud moment with my family and rung the bell I’ve been waiting to do since I got there the first day.

Next was to remove the stent from my throat. I went into surgery and was out of surgery 15 minutes later with the stent removed and was told that the fistula in my throat were miraculously closed by scar tissue but still have the risk of a floppy airway and scar tissue buildup.

From that point on I have had many ups and downs. I still continue to struggle with nausea, mucus build up overnight, physical and emotional issues with friends and family. Sometimes they can be understanding, sometimes they can’t. It can be very hard for someone who finally had their life together to have a rug pulled from under them and to pick themselves back up again.