My Safety Net
My safety net was what my whole life manageable. My life was pretty much one big medical issue. Luckily I had two parents and two brothers to support me. My safety net was made up of two people, my mom, and my dad.
They didn’t always make the best decisions for me, in fact, sometimes their decisions messed things up for me really badly, but they loved me 100% unconditionally and always tried their hardest to make the best decisions for me.
It all started when I was eight and began dealing with muscle fatigue, then when I was ten I first got diagnosed with gastroparesis (a paralyzed stomach) and had to have emergency surgery to have 2.5 inches of dead bowel removed and then had to have an NJ tube placed.
My NJ Tube
An NJ tube is a tube that goes in through your nose down into the middle of your small intestine (your jejunum) and hooks up to a bag of tube feed formula and a pump. The pump delivers about a couple tablespoons an hour of tube feed into your small intestine 24/7.
Every hour the pump sucks up 30 ml (about two tablespoons) of water from a separate bag of water into the tube and squirts it down your small intestine so that you get hydrated. It also prevents the tube from clogging. I had the NJ tube on and off all through childhood depending on how badly my gastroparesis was flaring up.
Teen Stroke Alert
Throughout my childhood, I was in and out of the hospital for multiple reasons like heart arrhythmias One of my arrhythmias was sinus tachycardia, my heart beating in a normal rhythm, just too fast. Other times would be just quivering instead of beating, that was called A-fib., and it put me at risk of stroke.
Yup, I was a teenager at risk of stroke. I had to take a blood thinner starting at age fourteen to bring down the risk of blood clots from the A-fib. The medication I took was called Eliquis. I also had to take Metoprolol to slow down my super fast heart rate and Tambocor to get my heart beating in the right rhythm, and that was only the start of a laundry list of meds I was on, but without them, I would literally be dead.
Other Deadly Heart Rhythms
Other times I would go into a rhythm called SVT where my heart would beat double time, due to wiring dysfunction in the electrical activity of the heart. It was a wiring dysfunction in those same two upper chambers of the heart that caused the A-fib.
Sometimes I would even have a near-lethal rhythm called ventricular tachycardia. They caught me in v-tach a couple of times at the hospital and the monitor would freak out, nurses would run in calling code blue and pulling crashing carts, and the room would immediately fill up with doctors and nurses. The episodes made my heart beat so fast that it felt like a blur in my chest. They also made it hard to get air in, and I got super dizzy and out of it. Luckily they always went away after a few seconds and no one had to do anything about them.
Safety Net of Mom to Get Me Through
Anyway, I had the safety net of my mom to calm me down in the aftermath. Ventricular Tachycardia is another electrical issue with the heart, this one is with the ventricles the two lower halves. They were beating at least twice as fast as they should have been. V-tach that persists for longer than 30 seconds can easily turn deadly.
I was also always in and out of the hospital for my low blood pressure, hypovolemia shock and other reasons for passing out (passing out in public embarrassed me to no end), out-of-whack electrolytes, and uncontrollable vomiting from the gastroparesis. When I turned nineteen I began dealing with high blood pressure, a 100-pound weight gain with no diet change, type two diabetes, increasing fatigue, hypothyroidism, and skull-crushing headaches.
The Answer To The Mystery
My kidney doctor, Dr. Green ran a battery of tests after tests determined to find the cause of all of my symptoms. Finally, after months and months of testing, I had gotten a phone call while visiting my grandmother who was recovering at a nursing home/rehab after fracturing her femur. I was told I had a brain tumor on my pituitary gland that was releasing massive amounts of cortisol and that’s what was causing all of my new issues.
As soon as my mom had picked me up from the nursing home the day I had gotten the news about the brain tumor, I started babbling away to her in rapid-fire sequence about the life-changing phone call I had just received.
“You have what?” she had asked.
“It’s a tumor on my pituitary gland causing all sorts of problems.”
“I can’t believe it, I’m just so glad they found it in time. This is crazy.” She said.
“Yeah it’s nuts, after all this time, we finally know what it is. I’m a little scared too. Mostly excited because now we can fix it, but the idea of neurosurgery really freaks me out. I mean this is really serious stuff.”
“Yeah, I know Becca. I don’t blame you for having a whole lot of emotions about this, but I also know you’re one of the strongest people I know, and that if anyone can pull through this with flying colors, it will be you.”
Why My Mom is Safety Net #1
The thing about my mom is she has always been more accepting of my medical conditions than my dad. My mom is my main safety net.
My dad used to see every single one of my symptoms as either psychosomatic or manufactured for attention.
My mom on the other hand is more intimately involved in my healthcare. She came with me to all my appointments until I was about 24 and to this very day, she visits me in the hospital and talks to the people taking care of me. She regularly gets updates from my team of home nurses and PCAs and when I’m hospitalized she calls daily for an update.
How My Mom Streamlines My Care
The days I’m in the hospital and she actually visits she requests to speak to my doctor. Then together we come up with a list of questions we want to ask, treatments we want to clarify, and anything else.
Because of all her involvement, she really knows that it is impossible for my tests to come back positive if the symptoms are just psychosomatic or manufactured. She thinks my anxiety makes my symptoms worse, but she knows I am physically very ill.
“Thanks, Mom.” I smiled at her. It felt good to be reassured that my safety net believed in me.
“Whatever needs to happen to get you through this, we will make happen.” She assured me.
The Missing Safety Net
Yup, the safety net was in position and fully functional. The part that made my throat catch, the part that still smarted, was the fact that there was an empty spot where the other half of the safety net was supposed to be. It was an empty spot where my dad’s presence was missing.
I already knew he was going to, like my grandmother, chalk this up to be somehow a mistake the lab or doctors had made, or even worse, a way I had tricked the doctors. If I fell, I’d hit the floor, because my dad wasn’t there holding up his end of the safety net.
I will give him credit though. In the last year, since I got the news that my disease was in its final stages and that I was terminal, he has started calling me on the phone again. He has started texting me again, saying things like, how he tried his hardest with me, how he will always carry a piece of me inside of him, I am tearing up as i write this, I was so incredibly touched. He really did try his best, his love for me was just so intense that he couldn’t really face reality for the longest time.
A Pure Love Too Intense to Handle
Sure enough, over the next few months while I was going through the whirling dervish of testing and scanning and pre-surgery meetings there were multiple frantic hushed conversations that my parents thought I could not hear.
During one conversation about two weeks after the initial phone call with Dr. Green and one week after the Inferior Petrosal Sinus Sampling Study (the one where they had threaded the central line in through my femoral artery and up into my brain that had definitively located the tumor to be on my pituitary, I overheard my parents hashing it out.
“She can’t really have a brain tumor, this is crazy.” my dad said. “We have to put a stop to this nonsense.”
“But Max, she does have one. The labs all show that she has crazy high cortisol levels and the tumor showed up on the scan where they put a tube all the way up into her brain and showed heightened levels of cortisol in her brain but not in her arm, there’s no other possible explanation for the tumor showing up on the IPSS, the MRI, and the labs matching up with that kind of pituitary tumor.”
Trying to Slap the Borderline Label on Me Again
“Come on, we both know this is another one of her ploys to get attention to make herself feel taken care of and to distract herself from all of her pent-up anxiety and anger that she doesn’t know how to cope with otherwise. I’ve read about PTSD and borderline personality disorder, this is such typical behavior. I can’t believe you’re falling right into her trap,” he said.
“I agree with you that she has a lot of pent-up anxiety and anger that she needs help coping with, but there is no possible way for her to have put that tumor in her brain. There is no way for her to have created crazy high cortisol levels in her urine and blood when they did they did the IPSS,, there was even high cortisol in her spit when she did that test where she had to chew on a cotton ball at midnight two nights in a row and then put it in a test tube” My mom went off on him, he just stood there staring her down as she went through every reason it was impossible for me to have faked this brain tumor.
Why I Can’t Fake a Bain Tumor
“I myself watched her open the package take out the cotton ball, chew on it, and spit the cotton ball back into the package. I then sealed up the package and mailed it off. She couldn’t have done anything to alter that test, yet it came back positive fitting the same diagnosis as all the rest of the test results that were impossible for her to fake.”
“Yeah but,” my dad tried to interrupt but for once in her life my mom bulldozed right over him. I had never seen her doing anything like that before.
“There is no way for her to cause her blood pressure to fluctuate rapidly between way too high and way too low. There is no way for her to be able to cause her heart to beat in abnormal rhythms. There is no way for her to cause bright pink skin markings to appear or cause her to double her weight without eating anything and still have labs showing signs of malnutrition. There’s no way she could have mentally-willed herself to develop diabetes. This is a serious medical issue. We need to be there for her right now. We need to support her.”
De-nial is More Than a River in Egypt
“I can’t believe you’re falling for this, Vivian.” my dad said. “I spoke to my psychiatrist about this at length. He’s a medical professional and he warned me that people might fall into her manipulation. We have to use tough love. We have to present a united front. He said we have to refuse to talk to her about anything medical and just change the subject when it comes up.”
As I said, only one safety net was in place.
Luckily, as promised my mom was there for me 100%. She drove me back and forth to Boston, helped me remember to take my meds and check my blood sugars, made sure I had enough time to rest, gave me pain and nausea meds when I needed them, and held my hair back every time I puked. So the flurry of testing, scanning, and pre-anesthesia appointments continued on in preparation for my major neurosurgery.
