Slip into the mind of a sixth grader and travel back with me to 1989. The world watched as the Berlin wall fell, while my health crumbled more privately, life-threat unseen…
All I knew was I was in pain. A lot of it. It was a huge pain in my small chest. At age 11, I had felt nothing like it before. From the front of my chest through my back, it hurt. The other problem was my upset stomach. I’ve never been a fan of throwing up, but I sure wanted to then. It would have been a relief that morning, better than the ongoing queasiness and dry heaves.
I went to Mom.
She let me lay down in their bed. She tried to help my stomach by giving me some coke mixture stuff that I’ve since decided no kid should ever be subjected to. Nasty. Then, in response to my begging, Mom rubbed my back to try to relieve the pain. She says she knew something was wrong when I not only wanted to stay home from school, which was almost unheard of, but I asked her to stay home with me, which was unheard of. She called my pediatrician to get me in that day.
The next memory I have is at the doctor’s office. The challenge: We had to go from the waiting area down a hall to an exam or x-ray room. It was most likely a 20 to 30 foot journey. Whatever it actually was, what the eyes providing sight to my failing body saw was a 26.2 mile-long hallway they expected me to walk down. Are they kidding? I’m never gonna make that. But, with my mom at my arm, we somehow made it.
An exam and chest x-rays later, the doctor said we needed to get to the hospital. Everyone seemed very concerned. I just knew I still felt horrible. I was not very alarmed until I was asked the next question. Apparently, the doctor had said to go straight to the hospital, and had even said I could go by ambulance. So, one of my parents asked me if I wanted to go the hospital in the ambulance, or, they said, they could take me in the car.
My internal response: Ambulance? I need an ambulance? What? Those are for people about to die. Why do I need an ambulance? What’s going on? Ambulance?
My external response: No, I want to ride in the car with you.
Next: Laying in the back seat of our family car, safe from the ambulance ride.
Then: At the hospital. I’m told I have to have surgery the next day. I have a tumor in my chest. That’s why it hurts. They need to remove it.
That night: The nurse watching over me noticed I was having trouble breathing. I was rushed to the ICU where they had to quickly drain the fluid out of my chest. Due to the stress the tumor was putting on my system, fluid was building around my heart. Much later, I was told that if the nurse had not noticed when she did, the fluid would have stopped my heart shortly after.
At the time, what I knew was there were lots of people zooming around my bed, lots of bright lights, and lots of needles. They just kept poking me and saying they could not get a vein for an IV. In my mind I’m screaming at them to stop – can’t you just do it once? Stop poking me!
Then, morning: Rolling down a hall in my hospital bed, the foot turning toward some big double doors through which they wheeled me. I was headed into surgery. The bed was stopped. Lots of people around me.
My thoughts: Would someone please just hold my hand? I think it will all be ok if someone will just hold my hand.
Someone did. How did they know?
Then: A mask over my face that put a terrible taste in my mouth. Did I have bad breath? I tried to say something. I motioned for someone to remove it so I could talk. I told them I think I could taste my bad breath inside the mask. They just smiled and put it back on. What, no one else in the mood to joke around?
Then: A whirlwind. ICU. Tubes, tubes, and more tubes. Couldn’t talk, tube in my mouth. Couldn’t move, tubes in my side. IV in my arm – right only since my left one was all swelled up. I sure didn’t feel any better than I had the night before.
My mom, telling someone the tumor was “buh-nine.” What’s buhnine? Is that bad? She seemed ok with the news, but teary-eyed, so it was hard to tell. I couldn’t ask.
Lots of poking and prodding.
Motioning for a pen to communicate.
People in and out.
I felt gross.
The order things happened, I couldn’t tell you. I know they took the tube out of my throat at some point. Then I had to use “the black thing” which I dreaded at first then ended up asking for later. It was a big black plastic balloonish bag. The end went in my mouth and helped suck the stuff out of me when I felt like I was drowning. It hurt at first, then provided relief. I also became very acquainted with breathing exercises. I had to suck on a plastic tube that was connected to these cylinders with balls in them. If I sucked hard enough, I’d pull the balls to the top of the cylinders. I could barely make the first one move. My left lung had collapsed in surgery. This exercise was supposed to build it back up.
I also learned a new word. Teratoma. It was the type of tumor, made up of many different types of tissues, they had removed from my chest, around my heart and left lung. They suspected it may have been present my entire life, and just kept growing, undetected, until it was so big it finally affected my body functions. I also heard the theory “absorbed twin.” Much later, I even got to see a slide of the lumpy masses that had been removed from me. I could’ve lived without that.
I remember the ever-changing IV. They seemed to have to switch the location every day. But, they could only put it in my right side because something had happened in surgery to swell up my left side, and they couldn’t risk it. I still don’t understand all that. As a lefty, I was just glad to have that arm free of tubes.
My pastor came to see me a few times. Poor guy – every time he’d come they had moved my IV. He’d go to put his hand on my arm or hand for comfort or prayer, and I’d wince in pain because he’d hit the needle. He’d remember and stay clear of that spot next time, but it would be moved again. He finally decided during one visit to stay at the foot of my bed, away from all the machines and tubes, and patted my foot. Of course, they had used up all the spots on my arm by then and had put an IV in my foot! Ouch! I still appreciated the visits and prayer.
Another “visitor” I enjoyed was my favorite ICU nurse, Donna. She was so nice. She brought me jolly ranchers. I hadn’t eaten a real meal for days, much less good junk food. Man, candy never tasted so good. My dad said I smiled so big with that candy swishing around my mouth. They couldn’t believe how happy I was.
Donna also helped me get through my cat scan ordeal. She showed me a BIG white cup, filled with yellowish fluid. I think I had to drink it all to make my insides glow so they could see if everything was ok in there and if they’d gotten all of the tumor. I drank. She encouraged. It was so nasty. That coke mixture from my mom seemed like nothing now. I choked it all down. Then, she told me the bad news. There was another cup of the same XL size that I had to drink. What? Really? You can do it, she told me. I got ¾ of it down and felt terrible. She said that was enough.
I was wheeled to the tube machine. It was big. I had to pee. I was told the test would take a while. I told one of the nurses I had to go. She said I should just go and they’d clean it up later. What could I do? I was too sick and weak to hold it for who knows how long. Embarrassed to be wetting the bed, not believing I was actually doing such a humiliating thing, I went – part of me disgusted with myself, part too sick to care.
It turns out, they got all but about 2% of the tumor. I think they told us that right after surgery, and this scan was just a follow-up. My surgery had lasted six hours. I found out later they almost lost me twice. I guess the part that remained would have been lethal to remove. 2% – is that good? Should I worry?
I remember getting my hair washed. I had been lying in my ICU bed for days and felt nasty. I had long hair, and it felt so greasy. My mom, with help from someone else, maybe my second favorite nurse, Susan, washed my hair while I lay in bed. It felt so good. I was ever so grateful and felt much better afterwards.
I remember finally venturing out of bed. The goal was to make it to a chair next to my bed and sit up for a while. They called this progress. Making it more complicated were the two drain tubes still stuck in my side, attached to a VCR-sized box that had to be moved with me. I did it. During one of these successful ventures, I got to stay up “late” in my chair (late for a hospital – I think that’s 8 or 9pm – wow!) watching Goonies from a TV/VCR cart they had rolled in for me. That and the jolly ranchers were the highlights of my ICU stay.
After 11 days in ICU, I was finally promoted to regular room status. I was in a bed closer to the door at first. I remember being closer to the window later, so I may have switched rooms at one point, or just sides. That part is a little muddled.
I had at least one roommate during my stay. I only remember one anyway. Although, it’s not the kid I remember, but her grandma. She said she made stuffed animals out of kids’ blankets once they outgrow them or become too tattered to be used. My own yellow blanket (renamed “wooby” from “lallow blanket” after I saw Mr. Mom) was tucked safely by my side in the bed. I wouldn’t be surprised if it even rode to surgery with me, but I’m not sure if it did. I couldn’t imagine ever giving it up to make an animal out of it. What was this lady saying? I told her I couldn’t do that. She said someday I’d change my mind. (And yes, I do realize I was in 6th grade and still had a security blanket. So sue me.) The worn and tattered remains of wooby (and there’s not much left, even to make a very small animal) are still in my spare room closet.
I had quite a few other visitors. My teacher came to see me, bringing along her son, who was in my class. She was a great teacher. I felt kind of bad her son had to come. I knew she had probably made him come and could tell he didn’t want to be there. Neither did I. My little sister also tried to visit me. The tender eight-year-old got sick to her stomach seeing me like that though – all the tubes and everything. She couldn’t stay. I don’t think she ever came back after that experience. That was ok though.
However, it was very nice to have visitors. The days (and nights) are so LONG in a hospital. Which brings me to one of my biggest frustrations of the experience. After hours of laying in bed, unable to sleep due to discomfort, you finally drift off, only to have the evil doctors on their rounds at the crack of dawn wake you up to see how you’re doing! What?! I’d be doing a lot better if you let the sick patient get her rest! It was a conspiracy – keep them sick from lack of sleep, more money for us. I remember simply pulling the covers over my head one morning when they woke me up. Who wants to wake up to a group of white coats staring at you, ready to poke and prod you? They laughed at my reaction, but I didn’t think it was funny. I’m sure they thought “Oh, a little kid being cute.” Boy, was I mad. I could have shown them a new technique with that stethoscope of theirs.
I did like my surgeon, Dr. Tracy, but the others I grew to dislike. They seemed to be determined to keep me there forever. The days passed like an eternity.
There was one doctor I really came to dislike. His name is gone from my mind, but I can still picture his face. Thin, with glasses and short dark hair, and, of course, the white coat. I’ll call him the Bad Doctor. He was the one who had to put a more semi-permanent IV line in my shoulder – right side of course. I guess they really had run out of options in my arm. He had to stitch it in. I remember something happened and he had to redo it later. I think the stitches pulled out? It never was comfortable – always hurt a little. I was sure the guy didn’t know what he was doing. Meanwhile, the tips of my fingers were sore from the seemingly endless nurse visits to prick me for blood. My poor fingers were black and blue. Leave me alone!
Later, the Bad Doctor was also the one put in charge of removing those drain tubes from my left side. That sure wasn’t a fun time either. He told me to lay on my right side. He would be pulling them out. He said it was important to lay still and hold my breath while he did it. I’m not sure of his exact wording, but something he said had me convinced that if I breathed or moved wrong my lungs would deflate and whoosh out those holes and I would die. Fortunately, it didn’t take too long. Whew. I made it. And now I was free of that box and tubes. One more step toward freedom.
They also checked on my incision regularly. Since the tumor was more on the left side of my chest, they went in from the side for surgery. The scar runs from partially under my left breast, around the side, and under my left shoulder blade. Because it was right under such a mobile part of my back, the shoulder blade movement caused the end of the incision to be much wider than the rest. It ain’t pretty, but I’m alive. Seems like I heard the word staples once. Did they say I was stapled shut and they’d dissolve inside me? What? Am I going to burst open? Do I have stitches to take out? All I knew was they checked it and took care of it.
Valentine’s Day arrived. I didn’t get to go to my class party. All the kids sent me Valentines though. They also made a huge card from everyone. I still have it. I remember my friends Kerri and Angel being there to deliver the cards. They were all grins and giggles that I got one from my crush that included the words “I like you.” They were all aflutter that he cried or at least teared up at the news about my serious condition. According to them, he started getting teary eyed and said it was hard not to cry when everyone else was. They were sure love was in the air. I thought he was simply a nice guy and friend who cared.
I enjoyed all the cards. Between regular get-well stuff and Valentine’s Day on top of that, I had lots of cards and presents. My class also got me a huge stuffed dog, dressed with ribbons and a pretty straw hat. The dog currently rests on the spare room bed, and her hat hangs on the front door during spring and summer. Some of my dad’s side of the family got me a basket of silk flowers. When my dad told me they were getting them, for some reason, when he said silk flowers, I pictured a huge bouquet of shining sliver flowers, with long silver stems. They would be grand and glistening. I think it had to do with the way he told me, sounding very excited and somewhat awed at what they were getting. When I finally saw what arrived, a cute white wicker basket filled with pretty pinks, whites, blues, and greens, I was very surprised and a little disappointed. The nursing staff gave me a baseball stuffed animal with all their signatures on it. Someone (possibly my Uncle Jack?) brought me a stuffed gorilla wearing a home-made nurse’s hat. Those are both on my stuffed animal shelf today. One of the second grade classes at my school got me a stuffed cat wearing a cute lacey vest and hat. I was so touched. They had collected the kids’ nickels and dimes each day and gotten me the gift. That one is on the shelf in the spare bedroom too. Someone else got me a short robe to wear over those less-than-private hospital gowns. Still have that too.
Once, I had a strong craving for chicken McNuggets. My aunt Skeeter was coming to visit, so my dad asked if she could stop and get me some. When she arrived, I think it was nearly two hours later. She said she had trouble finding a McDonald’s. Then, after all the hassle on her part and waiting on mine, I couldn’t even eat all six. It was either a problem with a loose tooth, or an upset stomach, or not being allowed food after a certain time due to a test the next day. Whatever it was, I was pretty disappointed not to get to eat them, and felt bad for the trouble.
I do seem to remember losing a tooth during my stay. Are kids still losing teeth at age 11? Seems old. I can’t remember if the tooth fairy found me in the hospital. Probably did though. I think one of my parents stayed in the room with me most, if not all, nights. Anyway, I was eating fried chicken at the time. So, that fried chicken meal was disappointing too. It was one of the few meals that actually tasted decent, and I was having a hard time enjoying it because of my tooth. Hospital food – quite an experience in itself. I did get some enjoyment out of circling my meal choices on the menu each day. It’s the little things in life.
I remember walking up and down the hall with my dad and my IV pole. It seemed to be taking forever to get my strength back. And to think I had just participated in a fundraising jump-rope-a-thon, Jump Rope For Heart, not too long before all this started!
Once I was more mobile, though, the itch to get out of there hit even stronger. I wanted to go home so bad. I wanted to go to school too! But, sigh, they wouldn’t let me out. Once I had reached the point of recovery, they kept coming up with excuses (so I thought) to keep me prisoner there. I had to finish some antibiotics. I had to have a normal temperature for three days straight. They told me three times I could go home the next day (or so I understood anyway) and then, when tomorrow came, I was told no, you have to stay another day after all. Of course, it was the Bad Doctor telling me this. Meanie! I was so devastated each time. Let me go! Look, I can make those balls go all the way to the top of the cylinders now! See? I feel fine. Let me out!
Finally, the parole board granted my release. It had been 11 more days since my move from ICU. I was free! We gathered up the balloons, flowers, cards, and stuffed animals and headed home.
I went and visited my class at school. I’m not sure if it was that day or maybe the next. My classroom was all the way on the third floor, and I remember I was panting as I entered the class. It was great to see everyone though!
I had to bring a pillow with me to school for a while, however, to sit on those hard chairs. I have not mentioned this part of the experience thus far, for it is the most embarrassing portion. Yes, worse than wetting the bed. In addition to the multitude of other discomforts I had to endure, I had a sore on my tailbone. It developed right away, so it’s hard to call it a bed sore. They suspected it was partly because of the swelling and trauma from surgery. So, laying in bed was even more uncomfortable for me. And, on top of regular dressing changes on my incision, I had to have my hiney cared for as well. It was so frustrating. The added discomfort and the fact that, after I was fully recovered from the surgery, this one thing hung on for a few weeks longer. I had to sit on a pillow. I had to have my bandage changed. My mom and grandma took turns for this duty. It’s not an area that’s easy to reach on your own. Let me tell you, that’s a pretty low-down experience, laying on your stomach in bed, having someone else put cream on your bum and bandage it for you. Yuck. That, too, eventually healed up though.
My follow-up visit with the surgeon went ok. More chest x-rays. He couldn’t believe I still had a small adhesive pad stuck to my side. It was for applying the bandage tape to, so it wouldn’t be harsh on my skin every time the bandage had to be changed. But, it was also adhesive, and would hurt to remove it. I had refused to let my mom rip it off. He noted I didn’t need it any more. I no longer had a bandage on my incision. He had to hold my left arm up out of the way with his head, since I kept trying to pull it back down, dreading the sting of removing the pad. He quickly took care of it – like a bandaid – one quick rip. Ouch!
I remember we had brought him his favorite candy bar. I don’t recall which one it was now, (Butterfinger maybe?) but he had mentioned it during my hospital stay. My mom bought him two, I believe, for I remember her letting me give them to him during that follow-up visit. I was very excited, and had them hidden in each hand behind my back. I brought them out with a flourish – “Here you go!” Some other staff saw and laughed. I was embarrassed, not sure if it was dumb or fun. Hopefully he thought it was nice though. I couldn’t tell at the time.
We were told I needed to come in every six months for x-rays, to ensure that remaining 2% wasn’t a problem. They were also concerned about my diaphragm, which had been partially paralyzed in surgery, possibly posing a problem. I remember the word “floating” was used. I got the image of a rubber-band-looking diaphragm floating up into my lungs and ribs and getting tangled up. I’m not sure how accurate that picture was.
Future x-rays revealed no problems, and even showed good diaphragm activity. I continued with follow-up for two years and was then released with a clean bill of health. They had no concerns of future problems from this ordeal.
I just turned 35, so I guess they were right. I still have the memories, and the scars. There are times when I’m self-conscious about the latter. They’re usually not visible though, and they are better than the alternative. There are other times when “2%” comes to mind, like the time my esophagus spasmed and the chest-to-back pain was all-too familiar. It was not Return of the Tumor, however, just bad eating habits. Note to reader – don’t throw down several glasses of acidic lemonade on top of a very full greasy meal. The result could be an esophageal spasm, which feels like death in your chest.
I am currently healthy. And grateful. I’ve had no further problems from the tumor or surgery. There were lots of people praying for me back then. Thank you, Lord, for pulling me through. Thank you to everyone whom He used to support me and my family during that time, to the skilled doctors (even Bad Doctor,) the nurses, the pastors, the family, the friends. Thank you, Lord, for my life. Thank you for 22 days I will never forget.