A Brain Tumor?

I remember every detail of what I was doing when I got the phone call that explained a good 70% of what was currently wrong with me. By then Dr. Green, had been following me closely for over a year, but I’d spent my most of my childhood and the entirety of my adolescence growing up in hospitals. My parents ignored all the positive test results and just insisted it was all in my head.  Over and over they told me to snap out of it and just start acting like a normal teen.  They never imagined I might have a brain tumor.

Dr. Green and I both knew something was very wrong and it was tying all my symptoms had run test after test, but so far all of them had come back negative. We both knew something was very wrong.  However, we were also getting very discouraged by all the dead ends we were getting in normal results.  Both of us were starting to lose hope.

Visiting My Grandmother

About two weeks after I finished the 24-hour urine cortisol, I was sitting in a recliner next to the nursing home hospital bed my grandmother was lying in.  She was in rehab after she missed the bottom two stairs going down to the basement and fell, fracturing her femur.  I was playing with the flip sequins on my unicorn shirt.

“Are you hanging in?” I asked her.

“Yeah, but I’m still very sore.  Plus the nurses, aides, physical therapists, and occupational therapists are constantly in and out and they drag me to the gym and work me to the bone,  No pun intended,” she grinned.  “I can never get any rest to heal up.  They never let me stop working.”

“Yeah, but my mom said that this is one of the best rehabs around and that they think they can get you walking with just a cane again,” I told her.  Although looking at her in bed all propped up on pillows with her skin so pale, scared me.  It reminded me that she was eighty-five years old. 

“Yeah, they don’t think I’ll need a walker or anything once I finish all the therapy.” she hsaid.

The Phone Call From Dr. Green

“Yeah, that’s awesome…” Just then my phone rang, I went to silence it but noticed it was Dr. Green’s office number.

I thought it was odd that she’d be calling after hours.  The office wouldn’t be calling with an appointment number because I’d just had my appointment.  Making a quick, on the spot, executive decision I answered it.  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 cortisol levels in their urine before. “

“What does that mean,” I asked.  I never imagined that she would tell me that I had a brain tumor.

A Brain Tumor: The Missing Puzzle Piece

“Well, this explains everything.  The brain tumor explains your extreme fatigue and weakness.  It’s why you gained all the weight you gained without eating anything extra.  The reason you have a moon face is from all the extra cortisol your brain tumor is dumping out.  Even your high heart rate and high blood pressure are caused by the brain tumor.  The brain tumor caused the bright red stretch marks, your easy bruising, and your loss of your period.  The brain tumor is also causing your severe headaches and your general feelings of unwellness.”  Dr. Green spoke rapidly and excitedly to finally have found her pot of gold at the end of the rainbow.

 We know it’s a brain tumor because of the sky-high levels of cortisol in your urine.  There are two organs that secrete cortisol.  The pituitary gland and the adrenal glands.  We know the tumor’s not in your adrenal glands because we scanned them and there was nothing there, so that means the tumor is in your pituitary gland.  This whole time it was a brain tumor.”

Making a Plan: Becca Vs. Brain Tumor

“So what do we have to do?” I asked.  All that was going through my head was “I have a brain tumor.  I felt like the ground had just gotten 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 for 100% that the tumor is in fact a brain tumor and not an adrenal tumor and we’ll have to get you a referral to an endocrinologist that specializes in these types of tumors.  He will manage the medication part pre and post-surgery.  We’ll also have to get you a referral to a neurosurgeon most likely to remove the brain tumor.

So it is treatable?” I asked.  Still wobbling around trying to find my figurative balance.

“Most pituitary tumors are treatable.  They can be treated with medication, radiation, surgery or a combination of the above.  Usually, surgery is the preferred form of treatment. If surgery is an option for you, you will feel like a brand new person once we get that tumor out of you!”

Part of My Diagnosis Remains a Mystery

“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 Cushing’s 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 brain tumor causing everything to go haywire but it’s fixable.”

Chronic Illness Can Be Invisible, But It’s Still There

“You don’t have a brain tumor!” 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 value 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.  I stopped worrying about her broken femur and old age as irritation and invalidation built up inside me.  The levels of fury built higher and higher within me.

“It’s not a mistake,” I told her firmly.

Finding My Pot of Gold at the End of the Rainbow

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.  This brain tumor and I were in for a long haul, with lots of test and treatment ahead of us.  However I would eventually find my pot of gold once I got to the end of the rainbow.

A Family of Skeptics

My grandmother was just staring at me funny.  I knew she bought into everything my dad (her son) told her about my illnesses all being in my head and being stress-related.  He told her that physically I could be healthy if I just worked my feelings out in therapy.  My grandpa always talked to me about his whole mind control spiel.  He said If I just willed myself better would get better.

“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.  

No One Wants to Be This Sick

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 in college because the diarrhea is so uncontrollable at night? Who in the world wants to get blood drawn weekly? 

I had to get iron infusions every month, potassium, magnesium and phosphate infusions weekly.  At least twice a week I had a doctors appointment.  Who wants to go to the ER twice a month and get admitted at least once a month.  I wasn’t chronically alive, I was chronically ill.

All I wanted more than anything else was to have a life where I didn’t have to take meds every four hours, could see the doctor only a couple times a year and not need hospitalizations.  I wanted to finish school, get my BSN in nursing, hang out with friends.  My dream was to publish my books and other writing projects.  It would be so cool to just be able to do normal every day things that people without brain tumors do.  Going to the movies without falling asleep would be awesome.  If I was healthy I could go to the mall and then go out for coffee on a daily basis without getting wiped out,

Now I had a shot at having my dreams come true.  I knew I would still be sick.  Dr. Green had explained that.  But I had a shot at being less sick.

My  grandmother’s attitude of denying my health issues, and insisting that the doctor or lab had made a mistake didn’t stick with me.  It didn’t trigger trauma memories of being in the hospital when I was ten, right before my bowels ruptured and being told that I was just attention seeing.

I was too excited to finally know what was wrong with me.  What was even better was that the doctors had definite physical proof in the form of my cortisol labs that I really did have this diagnosis. 

I stayed at the nursing home about another half hour talking about surface topics.  But when my mom came to pick me up, I floated out of there on cloud nine.