Surgery Evicted My Brain Tumor
My nose burned and my stomach hurt badly, as I lay in bed realizing that I had just survived major brain surgery. I no longer had a brain tumor that had overstayed its welcome on my pituitary gland.
Starting at the age of eight years old, my entire childhood had been overshadowed by constant illness and surgery. This was due to my gastroparesis and some form of what doctors said fell “under the umbrella of “dysautonomia”, whatever that meant. This caused a revolving door of hospitalizations.
Everyone was stumped when, as I aged into my late teens/early twenties, new symptoms appeared.
More Than Dysautonomia
I developed high blood pressure, even higher heart rate, flushed, red, hot cheeks, dizziness, worsening fatigue, and a weight gain of 100 pounds in six months even though all I consumed in a day was three bottles of Glucerna (low sugar/low carb nutritional supplement), and a few bites of mashed potatoes or buttered noodles at lunch and dinner to satisfy my parents.
My face got all puffy, they called it moon face. Pink stretch marks developed and networked all over my body and I ended up developing bone loss. I broke the same finger three times in the last year. The third time I broke it, they put a pin in it to keep it from breaking over and over again.
Even More Symptoms
That same year I also broke my left ankle and my right pinkie toe. My infection threshold dropped as well, and I became susceptible to pretty much any germ within a three-mile radius. I’d had pneumonia three times that year, multiple UTIs, and every time I got a cold or the flu it took forever to go away.
My hands and legs had so much fluid retention in them that if you pressed your finger down on my skin on my leg or hand and then let go, my finger would leave the indent there for a few minutes. The doctors called this pitting edema. I had also been suffering from severe headaches and high inflammation markers in my blood.
The Old “It’s Just Stress” Response
No doctor had been able to give me an answer, they were all very happy to pass all my symptoms off as stress-induced even though that made no sense. Stress can’t cause you to gain 100 pounds without changing your diet. People don’t have their face get all puffy and turn into “moon face” from stress.
You don’t sprout a network of pink stretch marks all over your body just because you have uncontrolled anxiety. Pneumonia, UTIs, and pitting edema in the hands and feet are symptoms that can’t be created by emotions. When they drew my blood to check for inflammation markers with tests like C-reactive proteins or sed rates, my results were sky high.
Beyond Anxiety
A normal C-reactive protein is anywhere from 0-8, mine was usually around 180. The normal range of a sed rate is usually around 0 to 29, mine hung out around 400.
My kidney doctor was the only one not so ready to throw her hands in the air and say “I give up it must just all be in her head!” She ran test after test until she ran a 24-hour urine cortisol test and found out that I had the highest level of urine cortisol that she had ever seen in her 30-year medical career.
Step One: Getting Prepared for Surgery Appointment
After a lot more testing, invasive procedures, and imaging it had been determined that I had a Cushing Disease brain tumor on my pituitary gland.
Dr. Gordon, my endocrinologist (the one who kept insisting that I gained weight and got type two diabetes because I must be eating too much fast food. I was a practicing Jewish young woman and I follow the laws around Jewish dietary restrictions and fast-food restaurants were not kosher) made an appointment for me with Dr. Tritos a neuroendocrinologist at Mass General Hospital.
That was step one. Then Dr. Tritos referred me to one of Mass General’s top neurosurgeon, Dr. Swearingen.
About eight hours ago I had just had the tumor surgically removed from my brain in a 5-hour surgery.
Body Scanning After Surgery
Now that I was out of surgery and in the recovery room, I did a body scan. The headache that I had was intense but not unbearable. The incision on my stomach hurt worse than my head and sinuses actually.
As Dr. S had explained to me in the office prior to my surgery they had made an incision in my stomach about an inch or two long and cut out a fat pad in order to plug up the missing area in my head where they had removed the brain tumor.
The incision was stitched back together and covered by a white gauze dressing securely taped down to my abdomen. My nose felt extremely stuffed up on both sides. I had gauze packed up into my nose and when the nurse saw me messing with it she reminded me that it needed to stay there for 24 hours, or I might find myself needing another surgery.
Got My Nose Packed Up in Surgery
“Dr. Swearingen has prescribed you two sprays to help with the nasal congestion that will unfortunately probably bother you for at least two or three weeks. You can use it after the packing is removed.”
“What kind of sprays are they?” I asked, my voice was froggy from the breathing tube I’d had during the surgery. My mouth tasted like lubricant and medicine, it was gross.
One spray is a saline mist and the other one is a decongestant. It’s very important that you don’t even begin to attempt to blow your nose for the next three days. When you do blow your nose in a few days, you have to be very careful and be very gentle.”
A Desperate Kind of Thirst
What I noticed more than the headache, more than the abdominal incision pain, and more than the nasal congestion was the fact that I was thirstier than I ever remembered being in my life.
I hadn’t had anything to drink besides a few sips of water with my morning meds for almost 24 hours, but it felt like it had been 24 years, and I hadn’t even been alive for that many years.
“Can I have some water please?” I asked the nurse.
“Sure,” the nurse agreed.
“Water?” my mom asked, looking at me like I’d grown three heads.
I never drank water. I drank a lot of unsweetened iced tea, sugar-free Gatorade, and diet soda, but never water. For some reason, water usually made me really sick to my stomach and my GI doctors had explained to me that water is actually very hard on the stomach for a lot of people with gastroparesis and malabsorption, it wasn’t just me.
The Extreme After Surgery Thirst Continued
But right then at that moment, that extreme thirst ripping through me made me want nothing except gallons and gallons of water.
The nurse came back with a cup of water with ice floating in it.
I was immediately discouraged. It was a little cup, only about 8 ounces and the ice made there took up too much space in the cup, making it hold less water.
“Do you want me to give you some Zofran in your IV so that there’s less of a chance of you vomiting this up?” the nurse asked me.
“No that’s ok.” I nearly snatched the cup out of her hands and downed it before there could be any more delays.
“Can I have more in a bigger cup?” I asked her. The water was the most amazing thing in the world, but I was so desperately thirsty it was just a tease. I craved more, more, more of the magical liquid. It was like my throat was dry as a desert and the hot sun was beating down on me.
Mouth Feeling Like The Sahara Desert
The nurse brought me more in a 12-ounce cup, but it was gone just as quickly. The more I drank the water, the more I craved. After the third cup, the nurse hesitated.
“You’re drinking these so quickly and so soon after some serious amounts of general anesthesia, I’m afraid to give you too much more. You’re going to end up vomiting all over yourself,” she said.
“I’m so thirsty though.”
I managed to coax a total of six cups of water out of her before she completely cut me off, and switched me to popsicles. Then Dr. Swearingen came in and he looked serious.
Diabetes Insipidus
“The surgery went off well, but the nurse just paged me with your latest set of post-op labs showing extremely high sodium. She has also told me you’ve drunk 2 liters of water in the last forty minutes and that she emptied four and a half liters of urine from your foley catheter in that same amount of time. All this information is telling me is that you have developed the condition, diabetes insipidus.”
“I know you mentioned that when Becca was signing consents before the surgery, but what exactly does that mean?” my mom asked
“It’s a complication of the surgery to remove the tumor. In most cases, the diabetes insipidus reverses itself after several months, but it does require treatment to prevent dehydration and electrolyte disturbances.” Dr. Swearingen explained.
Picking Up Diabetes Insipidus After Surgery
“What’s the treatment?” I asked.
” I’m going to prescribe you a medication that is initially going to be IV because your nose is packed, but then when the packing is removed, it will be a nose spray. You will need to make sure you take it every morning and every night religiously. You will rapidly dehydrate and become very ill without it.” he answered.
“That sounds really scary,” I told him, in my froggy voice with dreams of big pitchers full of ice water floating through my head.
“It can be managed.” Dr. Swearingen assured me. “I will have you follow up with Dr. Tritos rather frequently to make sure you’re getting the right dose of the medicine I’m going to prescribe you. Your sodium labs need to be monitored very carefully.”
Desmopressin
“What’s the name of the medicine? I asked
“It’s called Desmopressin,” Dr. Swearingen told me.
My mom asked a few more questions but I was too frustrated with the whole situation to answer. Why did I always get the rare side effects? Why did I always get the raw end of the deal? Sometimes I felt like I was a jinx or something.
PACU
I stayed in the PACU for another couple of hours.
It was one really large room separated by curtains. The room was all white and smelled very antiseptic with a little bit of a lemony tinge, it must have been the floor cleaner that they used.
All you could hear was the sound of alarms from heart monitors and respirators beeping and going off in a million different directions. The bed I was lying in wasn’t even a real bed. It was just a stretcher that I couldn’t adjust myself. This meant I was kind of slumped over to the side. I was too exhausted physically from all the anesthesia I had just been given. Plus, I was emotionally drained from all the stress I’d gone through mentally to get me to prepare for the surgery.
Watching the World Go By After Surgery
The curtain in front of my little closed-off curtain area was slightly open so I watched the hospital world go on in front of me. Stretchers rolled by pushed by the transport team. Some of the stretchers have oxygen on the back. Nurses walked by, always in a hurry with their stethoscopes, computer carts, iPhones (used to scan meds sent up by the pharmacy and communicate with the doctors, other nurses, and anyone else who might need to get in touch), and shiny Dansco nursing shoes.
The aides didn’t seem as much in a hurry as they stopped to chat, pulled along vital sign carts, grabbed bedpans or commodes, got drinks and sandwiches for people, or tracked down nurses to secure pain meds for us fresh post-ops.
My Foley Urinary Drainage Bag
My nurse periodically gave me nausea and pain medication through one of my IV lines, she kept me on the monitors. Dr. Swearingen had given me an IV dose of desmopressin but instructed the nurse to leave the foley catheter in until I’d finished getting rid of all that excessive urine that was pouring out of me.
My mom stayed with me until they moved me to Lunder 7, the neurosurgical floor, later in the day. Both of us felt like we had been run over by trucks and hung out to dry.
Lunder 7: The Neurosurgery Floor
I had a private room in a chic, modern-looking section of the hospital. The room was as large as some nice apartments in New York City. The floor looked brand new with not a scratch on it, there was both a couch and a chair pushed up against the large picture window that looked out on the Charles River and gave a great view from the seventh floor of Downtown Boston lit up at night.
The wall paneling behind the bed was wood and so was one of the walls. In front of me was a little mini fridge and microwave. I also had a closet and a set of drawers and a table on wheels.
Intermediate Care Unit
The wall behind me had a heart monitor on it that they were going to hook me up to once they took me off the transport monitor, as it was an intermediate care unit which meant it was a unit for people who were too sick to be on a regular medical-surgical floor but not quite that bad that they need to be in the ICU.
Being on an intermediate care floor meant you stayed hooked up to a bedside monitor and that your nurse only had two other patients. Once I got slid off the stretcher into the Lunder 7 bed, my mom leaned in for a hug and said goodnight.
Saying Bye to Mom
“Hang in there, I promise I’ll be back first thing in the morning. You’re doing awesome.” My mom told me as she wrapped her arms around me.
“Thanks, Mom,” I said.
Don’t forget to ask for your pain and nausea medicine before the symptoms get out of hand. If you wait too long to take them, it’s harder to get relief,” my mom reminded me.
“I know,” I told my mom, kissing her back, wishing she could stay longer. I also knew that, at twenty years old, I wasn’t going to be a baby and ask her to sleep on the cot in the room with me. She’d already paid for the hotel room anyway.
Night Number One: Post Surgery
The nurse was in and out of the room all night. I took the pain and nausea meds regularly all night long and in the morning my pain was a little better. My head still throbbed, my nose still hurt and was still congested, and my stomach still burned where the fat pad had been removed, but there was a slight lightening of the intensity of it all.
The worrying about the unknown of the surgery was over, now was the part where I had to bust my butt in recovery. I had my eyes set on big things in my future.
Healthy; What’s This?
I wanted to go to nursing school. I wanted to be like some of the amazing nurses out there who had saved my life, and I wanted to show some of those awful nurses what a real nurse is supposed to be like. To do that I needed to be healthy. I was all really to push myself as hard as I possibly could to get some semblance of a healthy life.
The question was, did I really know what a healthy life feels like?