Ever since I was ten years old I had carried a diagnosis of a chronic, incurable disease called gastroparesis. Really my issues started at age eight and become undeniable around age nine, but back then everyone wanted to blame my GI symptoms on things like stress, control issues, behavior problems or even eating disorders. At that point, there was no mention of any pituitary tumor.
At age 19, I found out that I also had a brain tumor growing on my pituitary gland. My kidney doctor, Dr. Green, had ran test after test on me, swearing she’d figure out what was wrong with me until on a whim she ran a 24-hour urine collection for cortisol and creatinine on me,
She didn’t expect to find much, as my blood levels of cortisol were normal, but she had exhausted all other options and knew something was wrong with me. Dr. Green had promised me that she wouldn’t rest until she figure out what exactly it was that was wrong with me.
Then one day, I had been visiting my grandmother in a nursing home/rehab facility and had gotten a life-altering call from Dr. Green where she informed me that I had a pituitary brain tumor causing massive amounts of cortisol to be released into my body. I’d had the highest levels of urine cortisol she’d ever seen in her entire career.
Dr. Green immediately set me up with the soonest follow-up appointment with Dr. Gordon (my endocrinologist) that she could find.
Dr. Gordon’s office had requested that prior to the appointment I have a CT scan and an MRI prior to the appointment.
When I found myself at an appointment with Dr. Gordon a couple of days later, she apologized to me for accusing me of lying to her about my intake of carbs.
“The reason you developed Type 2 Diabetes, and the reason your blood sugars haven’t been responding to typical oral hypoglycemic agents is because of the hormones this pituitary tumor is releasing throughout your body.”
I bit back the ‘I told you so’ longing to escape my lips. Dr. Gordon had previously insisted that I must not be being fully truthful to her about my diet. She kept claiming that I must be taking in more than three Glucernas a day and three to four quarter-size bites of mashed potatoes or buttered noodles
“I am an endocrinologist, but I’m not the kind of endocrinologist qualified to treat this kind of pituitary tumor, therefore I am going to refer you to a highly specialized neuroendocrinologist who is also an oncologist. He treats benign and malignant brain tumors on the pituitary gland. His name is Dr. Tritos, he’s at Mass General.”
“When do I see him?”
“We’ll schedule that appointment as soon as possible. I have my medical assistant working on that right now.”
“I would like to check up on a few things for you in your labs. We can do that before you leave the office.”
Inwardly I groaned. It was getting harder and harder for anyone to find my veins. It usually took at least five tries and a lot of digging around before they could get a trickle of anything out of me. Half the time the veins that they thought they found and wanted to try were ones that were all scarred and overused from repeated pokes over the years. Sometimes they stuck me in the wrist or knuckle and dug against bone because it was the only place not all scarred over. Other times they had to stick me in the finger and slowly milk blood out of my finger into the tube because nowhere else would give blood. I’d had to get a lot of blood drawn in the search for this pituitary tumor, and in the aftermath of finding it.
“Is that all you need?” I asked
“Once we get those lab results you should be ready to meet with Dr. Tritos. He will know exactly where to go from there.”
“Am I going to need to get the surgery soon to get this thing out of me?” I asked.
“Surgery is usually the best option. I’m sure Mass General will talk to you about all of your options including surgery and they can set you up with a neurosurgeon. They have some of the top neurosurgeons in the country there.”
“Okay,” I slowly whispered as my nerves started up in reaction to the thought of someone drilling holes in my skull and messing around with the part of my body that makes my personality, cognition, hopes, dreams, future, me who I am. The more the severe reality of this tumor hit, the more I felt like I was stuck in a washing machine set on the highest spin cycle. Why couldn’t this pituitary tumor have been in my adrenal glands instead?
I’d already had a CT scan and an MRI before my appointment with Dr. Gordon. I’d done the CT scan first. That test had been as mild-mannered as possible. All I’d had to do was show up at the main hospital’s radiology area, check in, and sit in the waiting room for “a few minutes”. Of course when a hospital tells you something will take “a few minutes” it will take at least an hour, or worse if they tell you it will take, “about an hour” you will be waiting all day.
Armed with several books on my phone, I was prepared for the worst but the few minutes were mercifully only 45 before they called me in. They had me change into a hospital gown (it was my first time ever not needing a pediatric-sized one) and lie down on the little stretcher-type thing that had a white sheet on it and a little pad where my head went. They placed some sort of strap over my forehead, to keep my head still before I went in and they repeatedly stressed to me the importance of not moving at all during the scan. The stretcher was motorized and for the test (that was about 6 minutes long), it moved me in and out of the circular arch, stopped, made noises as the arch spun, then it did it again repeatedly until they get all of the pictures of the inside of my head that they need. Every once in a while it would tell me to “stop, hold your breath, now you can breathe”.
The MRI was much worse than the CT scan. For the MRI I had to go to a totally different part of the hospital. Once again I had to wait about 45 minutes. Once again they had me change into a hospital gown. Only this time, they made me take off all of my jewelry. I had to take off my watch, bracelets, Medical ID bracelet, earrings, and necklace.
For the MRI they had to put an IV in. Each MRI tech tried twice. At my hospital, if you don’t get the vein in two sticks then you have to give up and have someone else try. That was six tries. Finally, they called IV therapy to come down with an ultrasound machine to try to put the IV in under ultrasound guidance. The IV nurse got the IV on her second try.
“You need to tell your doctor that you need some sort of port. You get blood draws and IVs so often that it’s completely necessary because you’re such a hard stick. It’s dangerous in an emergency to have such crappy veins and not have a port for venous access. You’re having bloodwork or IVs at least once a week. It’s time.” She told me after she finally secured the IV site. She knew me well from my frequent hospitalizations.
I just nodded. There was so much coming at me at once. I’d been sick my whole life, but now I was watching my health crumple up and curl in on itself like a dying plant.
Once the IV was in and I was all changed, I lay down on a similar table to the CT scan table, but this machine was more like a long tunnel to go in, not like an open arch like the CT scan machine had been. Inside the tunnel, it was dark and claustrophobic and the machine rattled around and made really loud crashing and banging noises for almost the entire 45 minutes that I was in there. They took me out halfway through and injected the contrast dye, but then I went right back in the loud, obnoxious, dark, claustrophobic tunnel for what felt like ages longer.
About a week after all the testing was completed I got a call from a Boston number.
“Hi, we’re looking to speak with Rebecca Pava.”
“This is she.”
“This is the Neuroendocrine and Pituitary Tumor Center at Massachusetts General Hospital in Boston. We’re calling you with an appointment for next week with Dr. Tritos on Tuesday at 2:00 PM. Will you be able to make that?”
“Yes,” I croaked out. The reality of this tumor was like an iceberg coming closer and closer to my ship.
