The brain tumor I experienced is called Meningioma. I just had to Google that – I think the fact that I can’t properly pronounce the word keeps me from remembering what it is.
What I do remember is how the oncologist explained my condition. Meningiomas account for a little over 30% of tumors overall. They are usually benign, and sufferers are often unaware the tumors are there. This seems to be hard for people to understand about the condition. Yes there were symptoms, but not like you’d imagine when you hear the term BRAIN TUMOR. Most people don’t know they have one because there are often no detectable symptoms until the mass grows large enough to affect other parts of the brain. Sometimes doctors don’t recommend removing a meningioma that isn’t causing any problems because it often grows slowly and may never cause any noticeable affects. My doctors have no idea how long I might have had mine, but they estimated about ten years based solely on its size.
There are three classifications for the tumor. Class 1 is benign and not prone to regrowth. Class 2 is benign, but may reoccur after treatment. Class 3 is malignant.
I had a second class tumor. For this reason, my doctors recommended radiation therapy as part of my treatment. Even though Dr. Mark D. Smith of Novant Health Care removed the entire mass, I was scheduled for treatment that would have aimed radiation at perfectly healthy brain cells to lessen the chance that the growth may reoccur.
Yeah, no. I completely credit my doctors and the excellent care I received from Presbyterian Medical Center in Charlotte, NC for saving my life. I can’t say enough about the skill and expertise of the surgical staff, but I’m also humbled by the patience and compassion from the hospital personnel as a whole. Weeks after I was discharged, I was still running into people who had to work with me, and let’s just say I wasn’t an easy patient.
I don’t remember most of the things I’ve been told I did or said, but if I’ve missed anyone and you still remember the crazy woman you had to deal with in June, 2014, I sincerely apologize and thank you for your care.
Once the tumor was removed and I returned to my right mind, I was able to consider my situation for the first time. Everything I was told about my next steps only led me to my next questions.
The way I’d found out about my undiagnosed tumor was both a blessing and a curse. The blessing being I never had a chance to worry myself about the possibility of undergoing brain surgery. I can’t say I’d have obsessed about what could have gone wrong, because that’s just not where my mind goes. But I would have been horrified thinking about what it would cost. Not enough that I wouldn’t have had a surgery necessary to save my life, but I might have drug my feet a little.
No I’m not crazy or suicidal. I love life. But I do recall running a cost/benefit analysis after the bills from my first surgery started pouring in. It was so damn expensive I felt compelled to try to calculate the ROI. For me, the bottom line was I wanted to live, but not if I was saddled with so much medical debt that my life consisted of nothing but working to pay them off. IMHO, there is a difference between existing and living, and as my father taught me, not a one of us is going to get out of here alive.
What can I say? On Myers Briggs assessments, I’ve always been an off the charts thinker. Practically a robot. I’m pretty sure I would have made the right decision in the end, because of course I wasn’t ready to die. And I would never purposely do that to my kids. Which is why I’m admitting that it was a blessing to me that the whole thing was taken out of my hands when I had my daughter take me to the ER.
The only reason I’d finally gone to the hospital the night I was diagnosed was because something seriously funky was going on with my vision. It kept flickering in and out, like old-school TVs used to do back in the day when the cathode ray tube was about to give out. It was the damnest thing, and even I couldn’t find a way to blame it on allergies. Plus it seemed to happen most often while I was driving, and I’d already totaled a Lexus and almost taken out my neighbor’s mailbox. I decided I’d better find out what was wrong with me before I hurt somebody.
Still blissfully ignorant and not all that concerned, I remember explaining what was going on with my eyes to the ER nurse. I kind of remember a cursory exam, and think they were about to release me with a referral to another eye specialist.
That’s when my daughter repaid me for giving her life by saving mine. She had been desperately trying for months to get me in front of a doctor. When she saw they were about to discharge me without what she felt was adequate treatment, she overcame her natural aversion to confrontation. Without me knowing, she pulled the doctor aside and told him everything she’d observed and I’d dismissed for the past six months and demanded he look into it.
I thought about protesting, but after seeing the distress on my daughter’s face I couldn’t do it. If I’d been right and there was nothing wrong, then the tests would have proven that and put her mind at ease. If our roles had been reversed, and I’d been the one thinking she was refusing badly needed medical treatment, I can’t even imagine what I’d have done.
I was stubborn and willful, too quick to take chances with my own life. But my baby is my heart and she’d been trying her best to get me to see reason. Unfortunately, she blames herself for my damaged eyesight because she couldn’t convince me to seek medical treatment sooner. In reality, I credit her with saving my life because I’d passed the point where I was able to make logical decisions about my care.
I changed back into the hospital gown and was whisked off for a CAT scan. And then with no information that I can recall, loaded into an ambulance and rushed to the main hospital for an MRI. After which I was finally told I had a massive growth on my skull and would need emergency surgery.
And that’s when I snapped. Living in denial isn’t as easy as we make it look. Fighting so hard for so long to hold onto what I wanted my reality to be had worn me out. Being told I truly was sick and having to accept that my immediate future was no longer in my hands since I couldn’t operate on myself allowed me to finally let it all go.
For months after I woke up, I retained vivid details about the world I visited when I lost my grip on reality. I wish I’d recorded them; people pay good money trying to take the kind of acid trip I went on for three days.
I remember seeing a lot of colors, and feeling absolutely paranoid. I had no idea where I was, but somehow I was convinced that I was being held there against my will by people who meant me harm.
Both my flight and fight reactions took over. I remember thinking that if they wanted me dead, then they damn well better be ready to kill me. No way in hell was I going to lay there and wait to die.
My daughter and her friend, who had gone with me to the ER, were in the room when I began to lose it. They tried to keep me from leaving the bed. When I fought back, my kid slipped out the door for help while her friend tried to keep me in the room. She is the sweetest thing, and she knows I’d never lay a wrong hand on her if I was in my right mind.
But to my eyes, she had turned into a girl my son was dating at the time. That girl was seriously overbearing and apparently I didn’t like her. Because I had no problem literally throwing her into the trash can in order to escape from the room.
It gets kind of foggy from there. I definitely recall feeling panicked when I saw my daughter in the hall, because I thought that meant she’d been kidnapped too. And yes, I do remember demanding to know if her brother knew she was there, which is completely sexist and a statement she’ll never let me live down. Whatever. I stand behind every girl-power idea with which she was raised. But politics can’t trump biology; I thought she was in physical danger, and her brother is a healthy young man six inches taller and quite a few pounds heavier than she is.
I also remember looking at the security guards they called to corral me and for some reason seeing an army of armed guards who all looked like Shaft. You know, the private dick who was one bad motha-shut-your-mouth? Well, that’s who I saw in front of me, a steady stream of men with big, side-parted afros, long black leather trench coats over tight turtlenecks, and large machine guns in their hands. Which is odd for so many reasons. That movie was a bit before my time, so I don’t know why in my moment of distress I would conjure up an army of men who all resembled Richard Roundtree. Especially considering there were only three guards, they were unarmed, and every last one of them was white.
I have no recollection how they got me to settle down and go back to bed. I just remember absolutely refusing to allow myself to be coaxed back into the room, because I knew they’d give me a lethal injection if I did. Personally, I’d have shot my crazy ass with a tranquilizer dart and left it at that, but my daughter begged them not to knock me out and they tried to oblige her.
After surgery, I had to wait a day or two for my eyes to transition from seeing multi colored starbursts to the dull, monochromatic world I’ll be seeing for the duration. I knew when I opened my eyes and couldn’t tell if the lights directly over my head were on that there was an issue.
But no one could tell me if the eye damage was permanent. It is; the fibers in my optic nerves are atrophied and there is no known treatment for that. But I’ve since learned how complex an organ our eyes really are. There are a lot of pieces and parts that all work together to allow us to see. A number of conditions affecting the eye can be treated or cured, and many people arrive at the hospital as blind as bats and walk out practically able to see through walls.
My doctor’s most immediate concerns coming out of surgery were the facts that I’d seized twice on the operating table, faced a continued risk of stroke, and initially couldn’t walk unassisted.
That was when the cursed part of experiencing life-altering emergency surgery kicked in for me. The doctors and hospital staff all had jobs to do, not the least of which was to help their patients recover and go home in order to make room for new patients. My family had all converged, and had been talking and worrying and forming opinions about what I should do next. But I had spent the entire time since my diagnosis either in my own little world or unconscious. I hadn’t had any warning that this was coming nor opportunity to find out my options. And there I was, having to face very real consequences that could affect me for the rest of my life, all while having all these voices chirping away in my ear.
I completely understood on an intellectual level that this was an emotional experience for the people who loved me. But I don’t work that way. Emotional decisions make no sense to me. I have to find out all the facts and potential consequences, then take time to think about them myself. And even when I know they are offered with the best of intentions, I really don’t respond well to unsolicited opinions.
Of the three obstacles, the idea that I might have a stroke scared me the most. Hell, the prospect of stroking out and losing my independence scares me more than death. But there was nothing to be done to affect my chances. Because of the way the tumor had moved my brain around in my skull, a stroke was a possibility that would either happen or it wouldn’t. The seizures were controlled with medication that I had to take for a full year before they felt the threat of a recurrence had passed. But they were already in the process of finding me a bed in a rehabilitative hospital to help me get back on my feet. Literally.
I had no interest in moving to the recommended rehabilitative facility. I’d had more than enough of being hospitalized. The people were very nice, but they were everywhere! I’m a deep introvert; after that kind of traumatic experienced I needed quiet and solitude in order to recharge my batteries and think about what to do next.
There is no opportunity for alone time when you’re a hospital patient. Someone is always coming in, poking and prodding and sticking you with things. Giving you pills to put you to sleep and then waking you up to ask how you feel. I’m sure I was a horrible patient because I’m getting agitated just thinking about that experience.
But I used that to my advantage. If I’d been able to relax into my own headspace the way I was longing to do, I might have thought and worried the situation to death. Instead, I had so many outside stimuli plucking my nerves, I could think of nothing but getting the hell out of Dodge. When the physical therapist showed up on a Friday to tell me a little about what I’d be facing in rehab the following Monday, I paid careful attention to the exercises I’d need to master. Then spent the entire weekend pushing myself until I could walk the hallway on my own.
When the physical therapist came to see me on Monday, she reluctantly broke the bad news. The nurses had reported how much progress I’d made over the weekend. The facility wasn’t going to allow me to have a bed. She said this with regret; I heard it with triumph. I didn’t really care what that facility said. This little blind girl was going home.
Next I had to break it to everyone that I also had no interest in submitting to radiation treatment as a prevention to a condition I may never even develop. Not to say I’m against the miracles of modern medicine. I would comply with radiation treatment in a heartbeat if my life was actively on the line. But IMHO, being a lay person doesn’t mean I can’t do my own due diligence and make my own decisions. I understood the doctor’s arguments, and that if the tumor comes back it will likely be much more aggressive.
If that happens and I survive round two, then I’d probably be more open to the radiation therapy. But based on everything I could find, there was no compelling reason that I had to undergo radiation treatment right away. I was aware the oncologist didn’t agree with my decision, but I made an agreement with Dr. Smith that I will schedule annual MRIs to screen for any regrowth of the tumor.
It wasn’t difficult for me to decide to go against doctor’s orders because it never occurred to me that it should be an issue. It was my brain, after all. But I have heard from enough people who say they would have felt uncomfortable questioning the expertise of a surgeon who had just saved their lives that I feel compelled to say this FWIW. Most doctors are extremely intelligent, educated, compassionate individuals who genuinely care about the health of their patients. But not a one of them is a God. From years of study, experimentation and observation, they know a lot about the human body and all the various things that can go wrong. But it’s still called practicing medicine for a reason.
The medical advice your doctor offers is possible because they have seen your particular ailment before. Which likely means they will go on to treat that ailment again no matter the outcome of your case. But as the patient, you don’t have that luxury. When it’s your body and life on the line, you only have one shot to get it right.
Maybe I’m too cynical, but I can’t imagine putting my entire life in someone else’s hands without at least trying to educate myself on my condition so I can make an informed decision. And I’d have to give the side-eye to any doctor whose ego was so fragile that he or she would seriously get butt-hurt just because I’m not willing to take their words as Gospel.