Although I was born healthy, the normal-happy-kid-thing didn’t last long. At age eight, I started having trouble walking long distances and standing for prolonged periods of time. My legs would get all wobbly and the room would get swirly and I would just feel exhaustion sweep over me like a blanket covering me from head to toe. I would just want to lie down on my bed, curl up around my collection of teddy bears, and take a nap, and that was even before I developed a brain tumor.
Things had significantly deteriorated by the age of nine. By the age of ten things were so bad that I’d had my first hospitalization because it became physically impossible for me to hold down any food or drinks. I ended up with my first NJ tube and my first surgery. The diagnosis was gastroparesis. The rest of my childhood was spent going in and out of the hospitals for medical issues.
When I turned nineteen my symptoms shifted some, my previously way-too-low blood pressure was now way too high. I had gained 100 pounds in six months without ever-changing the amount of nutrition going into me. My blood sugars and A1C had gone up so high that I had been diagnosed with Type 2 diabetes. Debilitating headaches became an everyday occurrence. The worst part was that even with the medication for my newly diagnosed hypothyroid disorder I always felt like I ran a marathon.
Dr. Green, my kidney doctor had been following me closely. She had run test after test, but so far all of them had come back negative. We both knew something was very wrong, but were getting very discouraged and starting to lose hope, so I remember exactly where I was when I got the phone call that explained almost everything.
It was about a week after I finished the 24-hour urine cortisol, I was sitting with my grandmother who was in rehab after slipping down the basement stairs and fracturing her femur.
“How are you feeling today?” I asked her.
“I’m still very sore and they come in and out of here all the time for everything,” she had told me. “I can’t get any rest. They work me hard.”
“I’m just glad that they think they can get you back to walking with just a cane again,” I told her.
“Yeah, they don’t think I’ll need a walker or anything once I finish all the therapy.” she had said.
“Yeah, that’s awesome…” just then my phone rang, I went to silence it but noticed it was Dr. Green’s number. I thought it was odd that she’d be calling after hours and didn’t think it would be the office calling with an appointment reminder because I’d just had my appointment. Making a quick executive decision I answered it and it was Dr. Green herself.
“Oh Becca, I’m so glad I caught you!” she gushed. “I got your results back, you have the highest levels of urine cortisol that I have ever seen in my entire career. I have never even heard of someone having that high levels of cortisol in their urine before. This explains everything. This explains your extreme fatigue, your weakness, your weight gain, your moon face, your diabetes, your high heart rate, your high blood pressure, your easy bruising, your bright red stretch marks, the loss of your periods, your headaches, and the general feelings of unwellness. The high levels of cortisol indicate you have a tumor on the pituitary gland in your brain, a Cushing tumor. It can in some cases indicate one on the adrenal glands but we didn’t see it when we scanned you there.”
“So what does this all mean?” I asked feeling like I had just gotten the ground whipped out from under me and I still was trying to balance and unable to fully react.
“Well, we’ll have to do some more testing to exactly pinpoint that the tumor is in fact on your pituitary gland and not your adrenals and we’ll have to get you a referral to an endocrinologist that specializes in these types of tumors and we’ll also have to get you a referral to a neurosurgeon most likely to remove the tumor.”
“So it’s treatable?” I asked. Still wobbling around trying to find my figurative balance.
“Most pituitary tumors are highly treatable. They can be treated with medication, radiation, surgery or a combination of the above. Usually, surgery is the preferable form of treatment. You will feel like a brand new person once we get that tumor out of you!”
“Could the tumor be the cause of my gastroparesis, malabsorption, and my previously low blood pressures, electrolyte imbalances, and frequent dehydration as well?” I asked. Hoping maybe all of my medical problems would just disappear once the tumor was taken care of. That would have been my ultimate dream come true.
“Unfortunately, that wouldn’t be caused by a Cushings Disease brain tumor. You still have some symptoms that seem more like they fit with a dysautonomia diagnosis and remain a mystery.” Dr. Green explained sadly.
After I hung up the phone I just stood perfectly still for a few minutes.
“Who was that, is everything ok?” my grandmother asked me.
Slowly the present moment and the nursing home room I was standing in came back into focus.
“They think they know what’s wrong with me,” I told her.
“What is it?” she asked me.
“They’re saying I have a tumor on my brain causing everything to go haywire but it’s fixable.”
“You don’t have a tumor on your brain!” she told me.
I was once again reminded how little non-medical and non-chronically ill people understand chronic illness. People assume if you are young and look okay on the exterior, then you must be perfectly healthy on the inside as well. They don’t understand how severely ill someone can be and still look okay on the outside.
“They just collected my urine for 24 hours and measured all of the cortisol in it. My doctor says it’s the highest values of urine cortisol she’s ever seen in her life.” I explained.
“The lab must have made a mistake then,” my grandmother said.
“I have been sick for half my life,” I told my grandmother, feeling irritation and invalidation building higher and higher within me. “It’s not a mistake.”
As the reality of the situation sunk in further and further, more and more emotions were imploding inside me. There was finally a diagnosis that explained almost everything that was going on with me. We could stick a name on this monster and scare it away into submission either with surgery, meds, or radiation. I was in for a long haul, treatment-wise and testing-wise it sounded like, but there was sunshine, cotton candy clouds, and glitter at the other end of the tunnel.
My grandmother was just looking at me funny. I knew she bought into everything my dad (her son) said about everything being in my head and related to stress and how physically I could get better if I just willed myself better. My grandfather was always after me with this mind control stuff.
“If you just imagine yourself healthy your body will naturally heal. You have to want to get better.” he was always telling me.
My dad had this theory that I wanted to stay sick and that I liked being sick. He had convinced some of my therapists of this and I had afterward stopped getting along with them.
Who in the world would want this life of sickness I was currently trying to survive? I had NJ feeding tubes jammed down my nose and gagging me half to death most of the time. The NJ feeding tubes made my nose run, my throat hurt, and made it difficult to move around because I was always hooked up to either the backpack with the pump and bag of tube feed or the IV pole at home.
Who in the world wants to have to remember to take medication five times a day? Who in the world wants to have to check their blood sugar four times a day and always remember to keep glucose tabs and glucagon on hand? Who in the world wants to have to wear pull-ups to bed at age 20 because the diarrhea is so uncontrollable at night? Who in the world wants to get blood drawn every other week, iron infusions every month, potassium and vitamin infusions every month, go to at least one doctor’s appointment a week? Who in the world wants to go to the ER or get admitted to the hospital at least once a month? I was chronically alive, but I wasn’t living a life.
All I wanted more than anything else was to have a life where I could not take meds, not have millions of doctors’ appointments, and not constantly be in the hospital. I wanted to go to school. I wanted to get my BSN in nursing, hang out with friends, and publish my books and other writing projects. Just being able to do normal everyday things like going to the mall or the movies or out for coffee on a daily basis without getting completely wiped out would be an amazing thing for me.
Now I had a shot at getting better. Now I had a shot at being at least less sick, if not, not sick.
Normally my grandmother’s attitude of trying to tell me that I didn’t really have a brain tumor, and that the doctor or lab had made a mistake would have really upset me. It would have triggered my Medical PTSD resulting from being in the hospital when I was younger and being told that I was just attention-seeking and/or mentally ill. However that day I was too excited to let it overwhelm me. Besides I knew the doctors had definite physical proof in the form of my cortisol labs that I really did have this treatable diagnosis.
That particular afternoon when my mom came to pick me up from the nursing room, I floated out of there on cloud nine.