Hospitals are scary

As part of my ongoing treatments, I often have to take several trips to the hospital. For a long time these trips were just visits to the ER when the pain was unbearable or I was having trouble breathing. And when I say often… well it was more like 2-3 times a year. But, as my disease becomes more aggressive by  the day, and my body continually turns against me, I find myself making more frequent “trips”.

At the end of April I found myself in the ER late one night with unbearable side pain. I was terrified that it was going to be appendicitis or something else requiring surgery. One of my biggest fears of being at the hospital is finding myself in a circumstance of being put under. I’ve read every story out there of patients not waking up from general anesthesia, or worse, being under but paralyzed, and yet feeling everything.

The nature of my disease, and being sick all the time, is that when I’m at the ER they always find something new. On that particular occasion the side pain was due to a compression fracture in my spine. Oh goody. They took CATscans, X-Rays, blood tests, and an ultra sound. This fateful visit to the hospital was how we were able to find the cancer. Had we not taken that scan, I may have gone months, maybe even years, without treating my Lymphoma. So in a way, the ER saved me a bit.

Because of an unknown chest pain issue I’ve been having I was referred to a GI doctor recently. And his unfortunate diagnosis was that I had esophagus issues and that we should do an Endoscopy. And hey let’s kill two birds with one stone and take a biopsy of the tumor currently taking up residence on the outside of my esophagus/stomach junction.  For those of you that don’t know what an endoscopy is… It’s a procedure in which they stick a camera on a tube and push it down your throat to look at the inside of your esophagus. Didn’t seem to scary to me until I heard I would have to be put under. Are you kidding me?

So, two weeks ago my mom and I took the trip down to Queens Medical Center so that doctors could have a look-see at my insides. I wasn’t allowed to eat or drink anything for 12 hours prior to the procedure so that nothing would be able to “come up”. My time slot wasn’t until 2:30, and with Mom deciding to fast with me, we were two very grumpy ladies by the time we got to the hospital.  Upon being admitted, I was only allowed a very small sip of water to take my midday medications with. Not being able to eat anything was pretty frustrating, but the hardest part is no fluids. My mouth was like sandpaper, my lips were dry and chapped, cracking if I opened my mouth too wide.

After taking my vitals, and having me change into yet another fashionable hospital gown, I was put to bed in a sense, and told I had to lay down until it was time to go home. A painful IV application, and an exhausting medical history followed until finally it was my turn to go in. And that’s when the all-consuming anxiety started. This is when good bedside manner really plays an important role in patient care.

I was wheeled into what was possibly the scariest hospital room I’ve ever been in. It was filled with big machines with many tubes, and cold metal trays with creepy looking implements on them. I don’t understand why I had to be awake to see that room. They should put you out before entering this room.

Without any warning, a bitter cherry-flavored spray was pushed into my mouth, causing me to choke and gag. I dry heaved several times, before finally getting it down and taking large gulps of air. Only to have it forced on me three more times. A numbing agent, they told me, once I stopped gagging for the final time. I wouldn’t have had a problem with that had they only given me a little heads up before violating my mouth. That’s when the real fun started. My head was strapped to the bed, my hands and arms bound at my side. There has got to be a better way to do this that doesn’t cause all consuming panic for the patient. Did I really have to be awake for  that??

Finally the surgeon came in and said hello, revealing that it was my GI doctor, the man who insisted I go through this nightmare to begin with. I started to say hello, but as soon as I opened my mouth the nurse jammed a hard green plastic spreader in. I felt my already chapped lips crack instantly. Had my mouth and throat not been numbed by the cherry death, I’m sure I would have tasted blood. The doctor then asked me a question which seemed ridiculous since there was no way I could answer with the plastic piece in my mouth. I mumbled a reply and then I was out.

The next time I opened my eyes I was back in the recovery room where I had left Mom. She was dozing on a chair next to my bed. A glance at the clock and I figured I was probably out for about 40 mins. My mouth, still sandpaper dry, was no longer numb, but my throat burned like I had Strep. A lovely nurse brought me a couple of single serving cups of POG, which I drank down in record tine, and a funky looking bar in brown paper wrapping. I don’t know if it was actually tasty, or my hunger fueled the flavor, but that blueberry snack bar tasted like one of the best baked goods I’d ever eaten. I shared it with Mom since she had fasted with me in support.

All I could think was “Thank goodness that’s over and I never have to do that ever ever again!”

Unfortunately, the next night I found myself back in the ER, with “complications” from the procedure, which was just a fancy way of saying I couldn’t breathe. And like I said before, we always find something new when we go to the ER. It may not be what I came in for, but I always leave with a new diagnosis. The CATscan I received that night showed fluid in my lungs. Great. Pneumonia. Possibly. ER’s hate to diagnose, so it’s always “talk to your PCP for more conclusive results”. Which is their way of saying ” We don’t want this on us”.

A few days ago at my GI doctors office, we received the findings from the procedure. The tumor was benign, leaving only the lymphoma in my upper chest to worry about. Little steps. Progress. That’s all I can ask for. But still, no reason found for this weird chest pain… My doctor was not happy. Especially with the newly found fluid in my lungs. So now I have to be referred to a Pulmonologist. Yet another doctor to add to the roster. And what to do about this continued chest pain, he mused.

“You know what,” he said, “I’m not convinced. Let’s do another Endoscopy.”

I’m sorry, WHAT?!

Oh, hell no.

Please visit my donation page at Christine Lilley’s Life Fund

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