He informed us that he would most likely have to crack my chest and that he would be removing my entire stomach. He would then cut a piece of my small intestine or colon and create a stomach out of that. It was a rare surgery but he is one of the top in the nation and we trusted him. He briefly mentioned I'd be on bedrest for a while after surgery but never really mentioned just how painful recovery would be.
Late afternoon on February 13, 2006, my brother, sister, and I all piled in the car and headed to St. Louis. I remember my mother being so mad because we got on the road much later than we planned, and I needed to be home to drink my nasty drink to completely clear out my digestive system.
We arrived home around 8pm, I drank my drink, and honestly, didn't expel of much like I was told I would.
I went to sleep that night without a care in the world. I really wasn't concerned. I didn't think I needed to be. My tumor was benign and for some reason, I was under the impression this was going to be a simple surgery. Looking back, I'm not at all sure why I thought this. Had I not heard the doctor say they were going to crack my chest and remove my stomach? Honestly, I think I was just relieved to know my tumor was benign so nothing else seemed to matter to me. I was just ready to get it all over with. Little did I know that this was my last night of lying down without worrying. Little did I know from that night forward, I'd worry so much.
The next morning, we headed to the hospital. My surgery wasn't slated until about 2pm that afternoon. I was shocked when shortly after arriving at 8am, they called my name to go up to pre-op. I wasn't expecting it. My siblings, Ben and Leah, had stopped at another hospital to see my Grandma who had just had a total knee replacement. They weren't there to see me off.
My mother asked if they could go with me and the staff said no. (Looking back, I'm not sure why. I went to the exact same pre-op I have been going to for years now afterwards for my endoscopies and they ALWAYS let someone come with me.)
My mom and dad teared up, hugged me tight, told me they loved me, and that they'd see me soon. I remember feeling weird. Should I be crying? My parents are. They seem so worried. Should I be? Have I been in denial over what's really happening? Maybe I didn't prepare for this like I should have. As I was walking back to the elevator to be taken up to pre-op I became so scared and sick to my stomach. I suddenly realized this was a bigger deal than I thought. I wasn't going in for a simple surgery. My parents were crying for a reason. And I was now alone.
In pre-op, I was overwhelmed. I had never been in this situation. They asked me so many medical questions. I didn't have a medical history prior to this. And everything in the past few weeks was new and confusing. I didn't even know the answer to half of the questions. I wanted my parents with me so badly. I needed their help with these questions. I changed into a gown, and was hooked up to an IV. I had a ridiculous amount of doctors and nurses and PAs coming in. My surgeon came in, then his residents, then his nurse, then his physician's assistant. Then the anesthesiologist came in, then their nurse, then their residents. So many people. All asking the same questions. And everyone was just so interested in my rare story. After the fourth "You're too young to be going through all of this", I started to get anxious out of fear of what "this" was.
Thankfully, I began to calm down as I realized I was in very good hands. All the questions were answered, urine sample given (they refused to believe I was a virgin and demanded a pregnancy test. I guess it's hard to believe a 21 year old is still a virgin these days???) I was just chilling in the bed, wrapped in blankets, with saline running through my body.
Then the anesthesiologist came in. They asked if I wanted an epidural. 'Epidural?? I'm not having a baby' I thought. Until this point, all things health and medical were not interesting to me. Actually, all things medical related made me queasy. I had only ever heard of an epidural in relation to pregnancy. I had no idea that it blocked pain. (Looking back, I was stupid. I should have known that but it just goes to show so how far removed I was from this all.) When they asked, I looked at them, with a terrified face, and said "I don't know. Do I need one?" The anesthesiologist's face instantly changed demeanors, as if saying "this poor girl" and she grabbed my hand and said very slowly and softly, "Honey, you're getting a very major surgery. I'm sorry there's no one up here with you, but yes, I would highly, highly recommend an epidural." I began crying, agreed to the epidural, and signed a form after being read the risks involved. Then they came in, told me to sit up, swing my legs off the side of the bed. They brought over a table, placed a pillow on top, and told me to lean forward over the pillow. I saw the ginormous needle and began (internally) freaking out. It hurt so badly!!!!!!! I began crying and asked if there was any way my mom could come up. Unfortunately, we were close to surgery time so they said no. (I've never seen more people look so sorry for something than the staff did for me on that day.)
Shortly after, an anesthesiologist came in and said they were going to give me something to relax me and then I'd be taken back to the operating room. Whatever they gave me made me feel drunk. But definitely relaxed. Things became a blur. I remember being wheeled down the long hallway into the OR. At this point, I was out of it enough that I couldn't open my eyes or speak, but I could still hear things around me and was conscience of what was going on.
They peeled off my gown, exposing my entire front side down about 6 inches past my belly button. They began cleaning my entire body...my neck, my entire chest, my stomach, and down past my belly button. I remember being so incredibly cold (those ORs are FREEZING to begin with. Then add in the fact that you're now wet and fully exposed, it's horrible.) They then just stood around talking, leaving me exposed (they couldn't cover me up because they had just sterilized my entire body) for what felt like 10 minutes. I felt so awkward. Just lying there, face up, topless, freezing cold. Finally, I heard Dr. Linehan enter. They placed a mask on my face, the anesthesiologist then said they were going to give me the drug to knock me out and asked me to count backwards from 10. I made it to 8 and I was out.
The surgery took about 6 hours. Afterwards, Dr. Linehan came down to the waiting area and pulled my family into a consult room. (At that time, my mother, father, brother, sister, grandpa and a few aunts and uncles) were all there. He explained that the surgery went well and because the tumor was encapsulated, he was able to save two-thirds of my stomach and only removed the very top third, plus the very bottom of my esophagus. I was also fortunate that he was able to work around my ribs and they did not have to be cracked. Then came the bad news. He told my family that the pathologist would confirm it, but their original tests were wrong. My tumor was in fact malignant. They were also informed the tumor, in just three short weeks, had grown from the size of a golf ball, to the size of an orange. (I cannot imagine how large it would have been if we had not been offered this cancelation in his schedule and kept our original April date.)
I had been cut from just below my sternum, down to about an inch-and-a-half above my belly button. I had a feeding tube on my right side that went directly into my small intestine. I had a drain on my right side (I'm not sure where it went into. I'm pretty sure it was my stomach.) Thankfully, Dr. Linehan had an AMAZING resident working with him, Dr. Doyle. She asked Dr. Linehan if she could stitch me up herself, explaining that I was far too young, with far too nice of stomach to have a big ugly scar. She took her time and spent more than double the time that most people would take to stitch someone up.
I was in recovery in the ICU. I will say that I do not remember much of my first 9 days (of 14) that I was in the hospital. I have very few, very blurry memories. My first memory, I was lying in the bed, not too long after surgery, and I could sense an elephant in the room. Even though I was told before my surgery that my tumor was benign, I could sense that had changed. I asked my brother, "Do I have cancer?" To which my mother responded "Yes." And then I freaked out. Sobbing. My machines all started going crazy and the nurses had to come in and calm me. I cannot imagine being my family, having to find this out, then tell me, and watch my reaction, while already watching me in so much pain.
During these first three days, my pain was not manageable. When the doctors would ask on a pain scale from 1 to 10, with 10 being hit by a semi-truck, how did I feel, I would always say a 10. I was always crying. Always in so much pain. I was on the highest dose of pain medication. They could not give me anymore without me becoming toxic. My original surgery was on Tuesday and just a few days later on Friday, Dr. Linehan decided to take me back in for surgery. He said there was no reason I should still be in that amount of pain and I could possibly have an infection or something such as a sponge may have been left in me.
Thankfully, after reopening me, they saw nothing. Dr. Linehan flushed me out, added another drain to my side, and I was closed back up. Again, Dr. Doyle took her time stitching me up. I cannot thank her enough. I've seen too many scars in my days (many of them other places on my body now) and they look large, rough, puffy in places. The scar on my stomach looks absolutely amazing. Honestly, I don't know that for as large a cut as was made, that it could look any better. I truly appreciate her genuine character for wanting to do this for me. I am very insecure about my scars, especially that one, but I cannot imagine how much worse it would be had any other doctor stitched me up.
Anyway, this second surgery seemed to do the trick because my pain had receded so much compared to the previous few days.
Dr. Linehan told us they thought my tumor was a GIST (gastro-intestinal stomal tumor). This was actually good news. With the cancers it could be, this was the best one. It was simply treated with a Gleevac pill, with none of the typical side effects of cancer (nausea, hair loss, fatigue, etc). And these cancers very rarely come back. We were very relieved to hear this and just needed to wait for the final pathology report to confirm it, before beginning treatment.
As I said, I do not remember much of my first 9 days in the hospital. I was not allowed to eat or drink ANYTHING. I wasn't even getting anything put into my feeding tube. I was simply living off whatever was going into my IVs. My mouth was so dry. My family members were allowed to wet a sponge and move it around my mouth to moisten it. I would cheat and squeeze it with my tongue and cheek to drink the water. But the moment it went down, the drains sucked it right out. It was frustrating because I just wanted to drink.
We also realized, while in ICU, that I am allergic to morphine. It causes itching and hallucinations. So much so that I was injuring myself. I would think I was a rollercoaster and it was headed for a wall, so I would jump out. But in reality, I was sitting up (using my abdomen which wasn't allowed) and trying to jump out of bed. My hallucinations kept causing me to move around which then caused a large deal of pain for me, and also caused me risk of injuring my surgery site. I was quickly taken off that.
Another side effects of the pain medicine was that it made me see things. They weren't hallucinations, more so just effects of the medicine. And they didn't cause me any physical pain. For instance, I would tell my brother that there were dinosaurs in my room. In reality, they were just flowers in vases. One time, I began swatting at the air asking my best friend, Jessie, "Do you see that?!" I thought I saw something falling all around me, and was swatting at it all. Another time, I yelled at my mother that someone was trying to come in the door behind me, when in fact, there was no door behind me, only a wall. Another time while Jessie was there, I was yelling at our cat, Mike Jones, to leave me alone. Jessie kept telling me he wasn't there but I saw him and he was bothering me. Thankfully, my family and friends saw humor in all of this.
In the hospital, I was not allowed to use my abdomen. At all. I just laid there in bed. After I was out of ICU, I began physical and occupational therapy. Physical therapy first started with learning to sit up. I had to grip the side rail of the bed with my arm, pull myself on my side, then push myself up with my arms, then lift my legs off the side of the bed. It might sound easy but it was so incredibly hard. You never truly realize how much you rely on your abdomen until you're not allowed to use it. Then I would learn to stand. Then to walk.
Occupational therapy worked with me to learn to put my socks on (another very difficult task since I was not allowed to bend over). They taught me how to use the restroom and how to do my breathing exercises.
Oh those breathing exercises. I hated them. I refused to do them. Essentially, I had this apparatus.
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This surgery was also the start of my ridiculous anxiety. It became really, really bad. I never wanted my mom to leave. She would sleep in the waiting room (because people were not allowed in our hospital rooms after visiting hours), or sometimes they were nice enough to let her sleep in my room, as long as my roommate didn't mind. My mom would go home to shower while someone else (family or friend) was sitting with me. She would leave and I'd get anxious. Then, it would be so bad and I'd call her, asking how long until she had returned. Usually, she hadn't even made it home at that point. My poor mother. I'm sure my anxiety and constant wanting her by my side only made things that much harder for her. She lived at the hospital with me for 14 days. Rarely went home. Rarely slept (because how can you in an uncomfortable chair?). When she slept in the waiting room, I'd call her multiple times a night, asking her to come to my room. But she never once complained. She was so incredibly strong for me.
Throughout my stay, I had many tests ran. I had ultrasounds done on my legs and groin area to make sure I didn't have any clots from not getting up and walking around. Although I had compression stockings on that tightened and loosened every few minutes (much like a blood pressure cuff) to help with circulation, blood clots from lack of movement were still a risk.
I had a few x-rays while there but those were always done in my bed. They'd come in around 2am, slip a board under my back, wheel a giant machine in, do the x-ray and leave.
I also had many, many vials of blood drawn and tested.
The worst of my tests was the barium swallow. They wheeled me down to a bottom floor of the hospital. I sat in the wheelchair for far too long, growing weak, nauseous, and anxious. They finally took me back into the examine room. There was a large table that they wanted me to crawl on. I explained to them that this was not going to be possible because I could not use my abdomen. Two techs stood there, contemplating different ways to get me on the table. When standing, it hit me around my hips. Finally, they got a step stool. At this point, I had grown far too weak. I really don't remember how, but somehow I got on the table. They put straps all over me so that I didn't need to use any energy to hold myself up. Then the table began moving into odd positions and I was asked to swallow this nasty, thick liquid. The barium swallow basically watched how my mouth, esophagus, and stomach all functioned. This was necessary before I could be discharged and allowed to eat on my own. It was a horrific procedure and by the end, I was in tears and so much pain. I had never been so happy to be back in a hospital bed as I was at the end of this.
After about 10 days in the hospital, Dr. Linehan came into my room after one of my PT sessions. I was sitting in the chair at the foot of my bed. He leaned against the end of the bed and it was difficult for him to make eye contact with us. He then informed us that they were wrong about me having GIST. He said my last c-kit stain came back negative, indicating I had Leiomyosarcoma. At the time, my mother and I knew nothing about it. We couldn't even pronounce it and asked him to write it down for us. He then explained that Washington University (where I was) didn't believe this diagnosis. So they tested it again. To get the same results. They still weren't certain to they sent it to Sloan-Kettering, another top hospital in the northeast. And they too, were highly shocked and confused, but also confirmed the Leiomyosarcoma diagnosis.
We didn't know what to think. But judging by Dr. Linehan's glassy eyes, his lack of eye contact, and his almost defeated demeanor, we knew it wasn't good. I knew enough about cancers to know that "sarcomas" are bad. They're some of the worst and rarest out there. Dr. Linehan informed us that it is a very, very rare cancer. That only four in one million people get it. That it's aggressive and severe (hence why it grew so quickly.) He said typically, removal is the only treatment. But that my tumor tested highest grade (meaning the cancer cells were dividing at the most rapid rate he had ever seen) and this gave them strong reason to believe the cancer cells had entered my bloodstream, and were now looking for a new place to attach to and grow. He promised me he would set me up with the best oncologists there were and he promised to get me the best care possible. He also said he was going to present my case to the oncology board of experts that he meets with every Monday of the month and they would devise the best radiation and chemotherapy treatment plan for me. Before he left, he advised us to stay away from the internet. "The things you read will only scare you. And your case isn't the typical case. Most Leiomyosarcoma patients are 50+ years old and it occurs in their extremities. You are 21 and it was in your stomach. You don't fit the standard so you can't compare yourself to what you read." And we took his advice. My mother and I stayed off the internet. (Too bad we couldn't convince my father of this. He immediately took to the internet and didn't heed the doctors warning. He read it all and thought it applied to me and became very scared and worried.)
Dr. Linehan told us to contact him anytime we needed him and told me to stay strong. When he left the room, I broke down. For the first time, I realized what this all meant. I had cancer. It hadn't truly sunk in though. But I kept repeating in my head "I don't want to die." Dr. Linehan's reaction had me so worried. He deals with this on a daily basis. Why was this so hard for him to tell us? ...."because it's so bad" is what I thought. But I didn't realize just how right I was.
A few days before leaving the hospital, I needed my drains to be taken out. One afternoon, one of Dr. Linehan's residents came in to take the tubes out. I asked if it would hurt and he said no. He took the bandages off the site where the tubes entered my stomach, cut the stitches holding them in, grabbed them in one hand, then said, "I'm going to count to three." But he lied. On two, he yanked them out and I screamed the loudest I've ever screamed in my life!!!! (And I have a very high pain tolerance, especially at this point). As they came flying out, they were making this nasty gushing noise. Blood and yellow liquid were all over his white coat, the side of the bed, etc. He apologized and explained that if he had said it would hurt, I would have tensed and made it more painful. (Which is true but still made me mad). He then explained the tubes actually get bigger as they go in, so that's why it was so painful. After he left, I told my mother, "This feeding tube is staying in the rest of my life. I am NOT going through that again."
I had amazing nurses while in the hospital and I had horrible nurses. Some truly cared, and others were just there for a paycheck. During surgery, I started my period. It's common for this to happen during a traumatic event to your body. However, very few nurses cared for this matter. They would seriously just leave me in a pad all day (No tampons allowed). My mother was the one who changed it and cleaned me. Ridiculous!!!
Cleanliness was also an issue. One evening, my mother mentioned to a nurse that I hadn't had a bath in days. This nurse was disgusted and told my mother that late that night, when things were calmer and patients were sleeping, she would be in to bathe me. This amazing nurse came in, helped move me to a chair and thoroughly cleaned my body. I cannot tell you how much better I felt.
On other days, a nurse would come in the room, set a bucket of lukewarm water down on a table, with soap and a rag and say "You can take a sponge bath" and closed the curtain. Did these people read my chart???? Did they not know I could barely get out of bed, let alone sponge bathe myself? One nurse, I even told I can't do this alone and she shrugged and walked out. I called my mother crying. She would immediately come in from wherever she was (home, the cafeteria, the waiting room doing work, etc) and bathe me. It's the poor excuse for nurses like them that made me want to go into nursing to make sure people had a nurse they could count on. One that truly cared.
I remember there were students working on our floors. One was assigned to a patient for a day. I had a student, maybe only 5 years older than me, that was so sweet. She was so thorough and so attentive. That afternoon she asked, "If you could have anything, what would it be." I said "my hair washed. It hasn't been washed since the night before my surgery." (Which was well over a week ago). She left the room and came back with a giant bucket of water, some shampoos, cups and sponges. She moved my bed out from the wall, helped me move my body towards the top of the bed, and hung my head off the bed. She covered the ground with towels and began pouring water all over my head, letting it fall into the bucket (and half of it on the floor) and she massaged my head with shampoo for a good 10 minutes. I cannot begin to tell you how much I appreciated this. It sounds silly but having my hair washed made me feel a million times better (especially because I had so many people coming in and visiting me). I wish I could remember her name to contact her and thank her. She and the one that bathed me are the exact type of nurse I want to be.
I remember each day I grew anxious and hopeful that I would be discharged. And each day I was told "one more day". I became so discouraged thinking I was going to stay in that hospital forever. After exactly 14 days in the hospital, and much begging on my part, I was discharged to go home. I know it was only 14 days, but it seriously felt like 3 months to me!
Dr. Linehan's care and concern throughout this all is what makes him one of the best doctors ever. I could see through his pain of giving us the bad news, that I wasn't just a patient to him. He truly cared about me. And he made good on his promise. Before I was discharged from the hospital, he had referred me to two of the best oncologists to set up appointments once he had met with the board of experts.
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