So, I have some explaining to do. I abandoned my previous blog (www.jhaffner.wordpress.com) while I was living in Madrid and I must ask for your forgiveness! What can I say? Once again, Madrid completely captured my heart (and apparently my hands); and as a result of being swept off my feet, I simply stopped writing. While I do ask for forgiveness, I don’t regret a single second of it. I allowed myself to fully embrace Spanish culture and that is something I will never forget, blog or not.
I’m back in New York now and having recently received my captured hands and heart from Madrid, I’ve decided to resume writing to soothe my itching hands. For how long you ask? However long it takes to scratch the itch!
If you’re reading this blog, I’m assuming you know me well enough to care about what’s going on in my life. I’ve received so many kind messages from old friends who I haven’t had much contact with, but have somehow found out about my medical situation through the grapevine. Thank you for all of your kindness and warm thoughts, they mean more than you know. I’ve been pretty private about my situation, but I know that a lot of you would like to be kept updated. That’s why I’ve decided to indulge everyone and write about everything on this blog. This way, it’s not in your face on Facebook, but easily accessible to those who are concerned, care, or are simply just curious. I warn you, the tale is long, so I’m going to break it up into chapters; read however much or however little you’d like. Let’s begin.
CHAPTER 1: The Beginning
My story starts my senior year of college. I was really excited to start senior year and to get back into the groove after my semester abroad in Madrid. I was finally feeling like everything was starting to click; I had a wonderful group of friends, a job that I loved, and I was in a city that didn’t seem to allow for unhappiness. As usual, I caught a cold at the end of September and I had a particularly hard time trying to kick it. Just when I thought the cold was gone, it would come back in full force (either that, or I caught 3 colds in a row…I’m not sure what’s worse). I loaded up on Tylenol and decongestants, went to the health center for what I thought was a sinus infection, and trudged through the rest of the semester. Then, I flew home to NYC for the holidays.
I’ve always had trouble adjusting to pressure changes when I fly, but this flight to New York was especially horrible. The whole time I was home for the holidays, my right ear just didn’t feel right. It felt like it never popped from the plane and when I would lie on my right side, I would sometimes get woken up by sharp pains in my right ear. I told my mom that I was having pain in my ear and explained that I had had a recurrent cold before coming back home and since I got sinus infections so frequently, I figured I had developed one again. I promised my mom that when I got back to LA, I would go back to the health center.
The holidays came and went and spring semester started. On January 15, 2011, as promised, I went to the health center complaining of ear pain and nasal congestion. I was seen by a doctor and I was prescribed a Z-Pak (typical 3 day course of antibiotics). I told the doctor that I had taken Z-Paks before and that they don’t work that well for me because I usually need something stronger, but they advised me to follow up with them if my issues were not resolved after I completed the antibiotics. I was also told to get Flonase (a nasal spray to help decongest).
On January 31th 2011, I went back to the health clinic. I felt like I was starting to get better after taking the Z-Pak, but my symptoms quickly returned. I told the doctor I had shooting pains in my ear when I would lay on that side and that I felt unwell overall and tired. They diagnosed me with sinusitis and recommended I come back to the clinic for a possible ENT referral if I have another recurrence. I was given: Augmetin 875-125 mg tablets to take for 14 days. I continued using Flonase and I was also prescribed Allegra-D 24 hour extended release tablets to take once daily for “allergies” (even though I said I had no allergies).
As February rolled around, the pain got worse and it would hit me in waves. One second I’d be okay and the next I’d be on the floor screaming and crying, praying that my eardrum didn’t burst.
On February 20th, 2011 I went back to the health center and got an emergency appointment with the doctor. I remember sitting with the doctor and just crying. He asked how bad my pain was on a level of one to ten and I told him it was a 50. I explained that it came in episodes and that each episode was more intense than the last. He prescribed me Vicodin for the pain – which pissed me off because that was really only putting a band-aid on the problem – and gave me a referral to see the ENT at USC’s hospital off campus.
I scheduled an appointment to be seen by the ENT doctor that was recommended to me. She was an allergy specialist and gave me the next available appointment. In the meantime, it was my senior year of college and so far, I felt too sick to really do what most seniors do their last semester…par—I mean, study (hi mom). I started missing a lot of class and falling behind, which was not only frustrating, but scary. I didn’t have the money to pay for another semester at USC, nor did I want to be left out on graduation day. I also had planned to be teaching English in Spain in August, which left no time for repeating classes. I tried explaining to my teachers that I hadn’t been feeling well, but in their defense, most second semester seniors were starting to “not feel well” either (most had come down with a serious case of senioritis), so I can’t really blame them for not cutting me any slack. Thankfully, Chris fell out of the sky and took care of me while I was sick. I practically moved into his apartment, which I’m sure his neighbors appreciated when I would scream and cry at 5 in the morning from a pain episode.
This is what happens when you fall behind on weeks of schoolwork.
February 23rd, 2011: I go to see the ENT doctor at the USC Keck Medical Center. I remember how easy it was to fill out the papers before my visit. Any previous surgeries? No. History of illness? No. Smoker? No. Reason for visit? Intense ear pain. Man, do I wish my medical file was that thin now!
The doctor came in and followed the typical ENT protocol for new patients. She looked up my nose, in my ears, in my eyes, etc. She said I seemed to be a healthy 21 year old, so what was my reason for the visit? I tried to explain the debilitating pain that I had been in, on and off, for the past few weeks. ”But you’re not in any pain now?” No. ”So, the pain comes and goes?” Yes. She concluded it couldn’t be an infection in my ear because that kind of pain doesn’t just come and go. She also noted that my ears looked just fine – no sign of fluid or earwax buildup. I insisted something was wrong. ”You don’t understand, I literally fall to the floor screaming in pain and it can last for hours. When it happens I think I’m going to go deaf.” She looked at me for a while and then started asking about any past allergies I’d had. I told her I didn’t have any allergies, but she said I could be developing them. She ordered a CT scan of my sinuses to see if there was any blockage that could be causing the pressure in my ears. I went downstairs, did the CT scan and came back up to wait for the results. I remember waiting for the doctor to come back in and just feeling stupid. Maybe I was being too sensitive and my ear just never popped from the plane ride. Maybe I still have a sinus infection and it’s messing up the pressure in my ear. Like the doctor said, I’m 21 years old and otherwise healthy.
The doctor came back into the room and showed me my CT scan. ”Completely clean,” she said. ”I’m going to give you a steroid to take though. You said that you had a sinus infection earlier and I just want to make sure that if there is some kind of inflammation going on in your inner ear, we can take care of it with steroids. Your ear looks fine, but better safe than sorry.” So, off I went with my prescription.
The next day, I woke up and took my first pill. I drove back to my apartment, picked up my bike and rode over to Starbucks before class to have some tea and a muffin. I had just settled down in a warm, sunny spot, taken out my computer and thrown on my sunglasses when I started to feel like something wasn’t right. I have a pretty sensitive stomach, but I had only taken 2 bites of my muffin and I knew it couldn’t have been anything from Starbucks. I hesitated for a couple seconds, started to sweat profusely, and decided it would be best to close my laptop and find the nearest bathroom. As I got myself ready, I made the quick decision to book it for my apartment, which was only a couple blocks away. I stood up and noticed I was drenched in sweat. Something was very wrong and I was about to revisit it. In what seemed like the longest bike ride of my life, I miraculously managed to make it home, lock my bike up, race upstairs, unlock my door and fall into my bathroom with not even a second to spare before violently vomiting. I won’t go into detail, but take my word – it wasn’t pretty. When I was finally through and pretty certain that there was absolutely nothing left in me that I could possibly throw up, I started to cry. To be completely honest, I cried because my life sucked at the moment: it was my senior year of college, I was too sick to hang out with my friends, when I felt well enough to socialize, I had too much work to catch up on, no one knew what was wrong with me, I was pretty sure the health center was going to blacklist me soon, my teachers thought I was a slacker, and now I was missing more class because I was too busy puking in my apartment bathroom. Pretty sucky.
I called the doctor and spoke with her secretary. I told her I thought I might be allergic to the medicine because of how violently I threw up and she said the doctor was in the OR but that she would call me as soon as she was out. In the meantime, she said to start taking anti-nausea medicine. A few hours went by and the doctor called me back and told me that I shouldn’t worry. If I take the anti-nausea pills for a few days, I could resume taking the steroids without a problem. I thanked her for her time and hung up the phone. I threw the steroids into my bottom drawer and decided it was time to get a new doctor.
That all happened on a Thursday. By Friday, I was feeling better and went to class. I noticed that while I was biking, my chest felt a little tight but I figured it was just growing pains. I went about my day as usual, but chest pains would come and go. It was nothing really painful, especially compared to the pain I had with my ear, and I was also relatively sure that if I went back to the health center, they’d probably end up sending me to a therapist for being a hypochondriac. Saturday was my invite with my sorority. Finally, I wasn’t sick, I had caught up on a fair amount of work, and I was ready to enjoy myself as a second semester senior. The night was awesome. Chris and I had a really great time, laughing with friends, drinking and just genuinely enjoying ourselves.
We got home pretty late and went to sleep. Well, Chris went to sleep. I sat up, wide awake. It was now Sunday morning, around 3am. I felt really weird. My lungs seemed to fill up with less air each time I took a breath. Something wasn’t right. I thought about waking Chris up and telling him I wasn’t feeling well, but it’s so rare that he sleeps while I’m awake that I couldn’t bare to wake him up. I remember I had my iPod playing a podcast that looped 3 times before I got the courage to get up and go look at myself in a mirror. I turned the light on in my bathroom and actually took a few steps away from the mirror because I had startled myself. I no longer had a neck. I tried to think of what the equivalent of a “cankle” would be for a neck, but couldn’t come up with anything satisfactory. I started to panic (mainly because I tried not to panic) and decided it was time to wake Chris up. I tapped him a few times. ”Chris? Hey, Chris! Do I look weird?” ”No,” he mumbled in his half-asleep state of mind. ”No, Chris, I think something’s wrong. Touch my face.” Now, I know that sounds weird, but trust me, it was much weirder to touch my face.
In the bathroom I had discovered that when I touched any swollen part of me (face, neck, chest), it made a crackling sound and felt crunchy. Unwillingly, Chris touched my face and immediately sat up. After a couple more minutes of me trying to get Chris to “get a good feel” of my newly crunchy skin, I realized that my voice sounded really weird. It was really nasally and sounded like I had just inhaled helium. It was now 6am Sunday morning, my chest pains were getting worse, my skin was crunchy, my neck was swollen, my voice was nasally, and I was short of breath. It was time to call my mother.
Isn’t it weird how mothers always know when something’s wrong? I guess it was weird that I was up at 6am on a Sunday morning after my sorority invite, but it was as though my mom immediately knew that something was wrong. She answered the phone right away. ”Don’t freak out,” I said (probably more for myself than for her) “but I think something’s really wrong with me. My neck is really swollen and my skin is crunchy. Oh, and it’s kind of hard to breathe.” My mom told me to go to the ER, but I told her that my university health center would be open in a couple hours and that I could just wait and go there. I had already had a few mishaps that landed me in the hospital and I really wanted to avoid it at all costs. So, Chris and I sat on my couch watching TV until the health center opened up. I started googling my symptoms, but the internet told me I was going to die so I decided that was a bad idea and closed my laptop. I was oddly calm about everything, even though I knew that something was very wrong. When the time came, we walked to the health center (we even stopped off at Starbucks for Chris – I insisted because I knew he’d probably be in the waiting room for a while).
I was about to walk into the health center but I stopped and turned around. ”What do I tell them? Hi, my name is Joanna, my skin is crunchy and I can’t really breathe, can you help me?” I looked at Chris. ”Yea, that’s what you tell them.” And so I did. I even prefaced it with, “This is going to sound weird, but…” Within seconds I was in a doctor’s office. I had my oxygen levels checked and they were dangerously low. The nurse kept hinting that Chris had beaten me up, and that it was okay to tell her. She even kicked him out at one point. (Sorry, Chris!) The doctor was rushed into my room and immediately checked all my vital signs. Unhappy with my oxygen levels and my chest x-ray (taken right when I got to the clinic), he had the nurse call an ambulance.
Chris was eventually let back into my room and waited with me for the ambulance to come. I kept telling the doctor that I didn’t want an ambulance (I had a minor mishap freshman year and ended up with a big bill from the ambulance) and that Chris could drive me to the hospital, but he said protocol was to call the ambulance and if I wanted to decline, I could, but I would have to sign some papers declining their service. While I waited for the ambulance, I noticed there was a nurse whose only job seemed to be to stare at me. I eventually decided to satisfy my curiosity, pulled my oxygen mask up a bit and asked why she was there. Her reply: “Oh, just to watch you breathe and make sure you don’t stop.”
Suddenly, the seriousness of my situation began to sink in. ”Am I going to die?” I asked. ”We’ve called the ambulance and they’re on their way. We’re doing everything we can.” Great. Of all the times in my life I wish someone would have lied to me, this moment always sticks out. The ambulance arrived shortly after this exchange and the EMT guys came into my room. They asked me all kinds of questions and explained that I needed urgent medical care. ”I understand,” I said, “but my boyfriend is going to drive me straight to the hospital. I promise.” So, I signed the papers stating that if I died on my way to the hospital, the health center was not responsible and then we were on our way. Chris and I left the health center and began walking towards his car, but I got about halfway there and I was having a lot of trouble breathing, so I had to sit on the curb and wait for Chris to get the car. Chris pulled the car up and helped me into the car. I gave him my family’s phone numbers because I could no longer speak and needed him to keep them updated on my status.
About halfway to the hospital, I realized I had made a mistake. I really should have gone in the ambulance. I was having so much trouble breathing that I started wondering if I would even make it to the hospital, and if i did, would I have brain damage from not getting enough oxygen to my brain? I didn’t want to scare Chris but fearing the worst, I told him to step on it. ”I know you’re trying to be careful and I know you like obeying the rules and everything, but you REALLY must drive faster. Run the red lights, honk your horn, do whatever. I need to get to the hospital. If the cops pull us over, that’s even better because they’ll escort us there.” Within a few minutes, we were at the hospital.
We left the car running in front of the “no parking” sign and rushed into the ER. I sat down and Chris spoke to the people at the front desk. My school had called in advance to let them know I’d be coming in. They handed Chris a bunch of papers and a clipboard and told him I needed to fill them out. Chris walked over to me and handed me the clipboard. I just looked at him like he was crazy and he read my mind. He went back to the people at the front desk and explained that I was having trouble breathing and really needed to be seen urgently. I began filling the papers out and Chris went to go move his car. I got to the date of birth box when a doctor rushed into the waiting room and called my name. I stood up, he looked at me, then turned to the people at the front desk and asked them why I was sitting in a waiting room with people who had broken pinky fingers when I very clearly could not breathe. I was rushed into the ER, given a gown and oxygen. Chris arrived shortly after and began calling my parents.
The nurses asked me the same questions over and over again. They couldn’t believe I hadn’t been in an accident or had any kind of blunt trauma to my chest. They said they had never seen anyone with subcutaneous emphysema, pneumomediastinum (air in the space in the middle of your chest – the mediastinum) and pneumothroax (collapsed lung, a collection of air in the space around the lungs) that had not had some kind of trauma to the chest. Unable to figure out the cause of my diagnoses, the nurses proceeded to treat me, but decided I should be admitted to the hospital overnight so they could run some tests. After recounting every second of my past 24 hours to at least 3 different nurses, finally, the pulmonologist (lung doctor) came to see me. I shook his hand and he introduced himself and said the nurses had given him the full run-down on my history. He suggested a chest tube to re-inflate my lung. Unhappy with the thought of sticking a tube into my chest, I asked if there were any other options. He said we could wait to see if my lung starts to re-inflate on its own. Since only about a third of my lung seemed to have collapsed, there was a chance it might re-inflate by itself. I liked that idea.
In the meantime, I began asking the doctor why this had all happened. He was unsure of the cause, but he said that sometimes in healthy skinny people, lungs spontaneously collapse. ”I’ve seen it a lot in really tall, thin athletes. So, maybe you’re just one of the unlucky ones.” I guess he could be right. After a few hours, I was transferred to my own private room and drifted off into a blissful, drug-induced sleep.
My friends, Kyle and Andy, skyping me into a DJ session while I was in the hospital 🙂
My Jugular Foramen Schwannoma Story 