When I woke up on the morning of December 13th, 2014, the first thing that I noticed was all the snow. It was coming down in snowballs, not flakes. The next thing I remembered was that I was making yet another trek down to Mass General Hospital that day. Dr. Swearingen, one of the top neurosurgeons in the country for pituitary tumors, was going to be meeting with me that day.
I had just been diagnosed with a pituitary brain tumor a month or two ago. My whole life I’d faced debilitating chronic illness in the form of gastroparesis, hypothyroid, anemia, SVT, POTS, A-fib, orthostatic hypotension, frequent episodes of hypovolemic shock, frequent episodes of passing out, muscle weakness, issues with electrolytes, and more recently, episodes of hypertension, bone loss, Type Two Diabetes, excruciating headaches, and fatigue.
My childhood had been swallowed by my chronic illnesses. Instead of going to school and getting engaged in after-school activities or hobbies or sports and hanging out with friends, I’d spent my formative years lying in a hospital bed at Mass General Hospital with an NJ tube up my nose into my small intestine for tube feedings, surrounded by my favorite build-a-bears, reading books on my phone, and writing.
It wouldn’t have been that bad but for my entire childhood, my dad continued to insist that there was nothing physically wrong with me, and depending on the day, or his mood, my dad insisted that I was either faking, or imagining symptoms because I was so stressed out, or I was a hypochondriac. My mom heard and saw the black and white evidence the doctors presented showing that I really was legitimately ill and couldn’t possibly be faking, imagining, or exaggerating, but she was always telling me that everything was stress-induced and that I would get better when i dealt with my anxiety. It didn’t matter how many times the doctors explained to her that my gastroparesis had no cure and that my case was degenerative and no amount of psychotherapy or learning of coping skills would cure it, she stuck to her guns on that one.
At least my mom was willing to follow my doctors’ advice though, my dad tried to get her to ignore their recommendations even though most of my doctors caring for me by that point were from Mass General Hospital, the number one research hospital in America.
The next step in the game plan was to meet Dr. Swearingen My appointment had been set up for about a week after my inferior petrosal sinus sampling test. By then my mom’s car pretty much knew how to get from our house in Springfield, MA, to Mass General Hospital in Boston, MA (about a two-hour drive) on autopilot.
Dr. Swearingen was an older man with graying hair and much less openly friendly and outgoing than Dr. Tritos, but nonetheless, he was nice and got straight down to business.
“So you have a tumor on your pituitary,” he said, like a statement, not like a question, I just nodded.
“Your options are surgery, medication, or radiation. Medication, if you choose that route, you would have to be on for the rest of your life. It comes with side effects and it doesn’t always work.”
“I’d rather not treat it with medication,” I told him. “I’m already on a million medications.”
“Well I won’t argue with that,” he agreed with me, scanning through the Mass General Hospital Medical Record database with all my info on it including my medication list.
“Radiation usually works eventually but not always. It can take 2 to 10 years to take effect and you would have to take the medication in the meantime while waiting for the radiation to take effect.”
“That doesn’t sound that appealing either,” I told him.
“Surgery could remove the tumor, it’s about a 4 to 5-hour surgery, there’s always risks with surgery like death, or brain damage, or diabetes insipidus, but once the tumor is out you’re cured and there’s only a 10 to 20% chance of recurrence.”
“I don’t like the risk of death or brain damage,” I told him.
“I do these surgeries every day and have never really had any issues with them. The only regularly occurring complication I get with pituitary tumor surgeries is diabetes insipidus.”
“I already have diabetes insipidus,” I told him.
“No, you have type two diabetes, it’s different.”
“What’s diabetes insipidus then?’ I asked.
“Diabetes insipidus, in the case of this particular surgery, would be caused by damage to either the hypothalamus or the posterior pituitary which would affect the release of the antidiuretic hormone that is responsible for concentrating fluid in the body. Without antidiuretic hormone concentrating body fluids, the person will just pee out all the fluid in the body and become extremely dehydrated. Diabetes insipidus causes a few main symptoms, excessive thirst, excessive urination, high sodium, imbalanced electrolytes, and dehydration. It can be treated with extra fluid intake and medications like Desmopressin. It has absolutely nothing to do with blood sugar or diabetes mellitus.”
“Do I have any other options besides the surgery, meds, or radiation?” I asked. “Because I’m not liking any of these options.”
“You could go on hospice and let nature take its course. Beyond that no.”
“What would you do, if you were me?”
“I’d have the surgery. We don’t open your skull for the surgery either,” he told me.
“How do you do it?”
“We go in through your nasal cavity and use tiny little cameras to take the tumor out through your nose.”
I winced, not knowing which was worse but agreed to have the surgery.
Dr. S pulled out a large desktop calendar for the month of December.
“I’m booking out quite far, but I’m really worried about the condition you’re in, so I’m going to squeeze you in for December 22nd, which is two weeks from now.”
I felt like the bottom of my chest slid open and my heart sank into my feet. That felt really soon. Would I be able to mentally prepare that quickly? Shakily I pulled my planner out of my hello kitty purse.
“Your arrival will be at 9:30 AM. You’ll check in at the main desk in the Lunder Building. Prepare to stay in the hospital for 4 to 7 days.
Swallowing hard, my hand was still shaking as I wrote this information in my planner.
“See you soon,” Dr. S said as he shook my hand and led me out of the office.
“See you,” I croaked back.
The next two weeks were all about preparing for a life-saving, yet life-threatening surgery.
Sarah and Corrie and I went to Build-a-bear and made matching Bunnies and I planned on bringing mine with me to the hospital. I named her Buttercup. Corrie and Sarah made me a blanket to take with me. My mom, Corrie, Sarah, and I went through my pajama drawer looking for ones to bring with me to the hospital.
Time was passing too quickly, the surgery date was looming closer and closer. During the day when I was sending the novel that I had written off to literary agents and publishers, working on a writing project, hanging with Corrie and Sarah, or chilling with my mom, then I was fine.
At night though, fears percolated through me. I thought of all the what-ifs about the surgery and freaked myself out.
The night of December 21 was the worst. My arrival time at the neurosurgery Pre-op of Mass General Hospital was 9:30 the next morning, which meant we had to leave at 7:15, which meant I had to wake up at 6 AM by the latest, only I couldn’t fall asleep.
I kept thinking to myself that it might be the last night that I’d be alive or the last night that I wasn’t a vegetable. My heart was hammering at my ribs, my stomach was cramped up, and my jaw was so tight it was giving me a headache. At 1 AM I got thirsty but it was past midnight so I couldn’t drink anything. At some point around 3 or 4 AM, I must have fallen asleep because I remember my mom calling out to me from my doorway at 6:15 AM.
“Becca, I’m serious, you really have to wake up this time. We can’t be late for your surgery. I’ve already packed everything up, put gas in the car, gotten you a tiny sip of water for the pills that pre-op wants you to take, and tried to wake you up five times in this last half hour.” my mom told me.
I dragged myself out of bed, threw on leggings and a t-shirt, took my pills with a minute sip of water, grabbed my hospital ‘go-bag’, and followed my mom out to the car.
There was no going back now. I was about to have major neurosurgery.