This is an attempt to condense a 2-and a half-month saga into less than 2,000 words. There will be gaps in the information and series of events, but hopefully it will explain my extended absence from the blog.
In the Beginning…
Dec 29, 2016
In early January I hinted that I was experiencing my first migraine. It was both terrifying and thrilling. Terrifying because there was no pain to rival what I was experiencing in my cranium at the time, and thrilling because it was exactly the sort of pain I’d always hoped to gain familiarity with. I used to witness my cousin endure frequent migraines, and at 19, I thought it was so sexy. She would pop her prescription pills, sit quietly at the kitchen table and let her lashes rest against the dark circles beneath her eyes. The picture of serenity was in complete contrast to the outgoing and gregarious woman I’d known my entire life. What kind of relief did she feel after taking the pills? What was it like to be THAT quiet? I wanted to know!
Nearly 20 years later, I got my wish. After spending three days at some of the Western Capes most beautiful beaches, I began to suffer some of the most debilitating headaches I’d ever experienced. They felled me…kept me in bed for the majority of the day. There wasn’t an over the counter pill I could take that would dull the pain for more than an hour. This must be the migraine I’d so desired as a college sophomore! Now that I’d diagnosed myself, my husband dutifully went to Clinks to pick up some migraine medicine – a two-day supply cocktail of pills that rendered me barely coherent and almost motionless. A week later, I will still living with excruciating pain in my head.
Eventually – after much necessary and needed nagging from the wonderful women in my life – I found my way at the doctor’s explaining my symptoms. We ruled out meningitis (which I’d survived in 2013), as well as allergies. The doctor surmised that I probably had a tension headache, which lead to the migraine or vice versa. She prescribed 6 different pills and told me that if the headaches didn’t go away, we could investigate with a blood screen or a CT scan.
Those words proved to be key.
While on the medication, I felt wonderful. I was functional (not able to drive, though) and back to interacting with my family. I called my doctor to tell her the goodness. We were both thrilled and made no plans to see each other again. But two days after the meds ran out, the pain was back. By this time, it had been 12 days since my first headache. I did not remember my cousin suffering migraines for this long, and I was alarmed that my first migraine should last this long. However, I figured it would go away on its own if I sat still, avoided loud noises and drank some tea. It didn’t work.
I spent my birthday week alone in a cabin in agony.
Feb 1, 2017
When I could no longer endure the torment, I went back my doctor. She ordered blood work and a CT scan. We had to drive to the next town to fulfill the latter. The radiologist gave us the disc with my images without a word. We then went to the otolaryngologist (ear, nose and throat doctor, aka ENT) to investigate if my discomfort was due to allergies as my GP suspected. The man was a congenial man with an intense stammer. After greeting us and making small talk, he casually popped the CD into his computer and grew very pensive.
I asked him if I could put my head on his table, as by this time I was experiencing fierce pain.
“S-s-s-so this is your b-b-b-rain…,” he said. “And n-n-n-n-not to alarm you, b-b-b-but there’s a mass that sh-sh-sh-sh-shouldn’t be there.”
It took me a while to register what he was saying because of how it was being said. I had a tumor, he revealed: it was slow growing and about the size of a golf ball. Judging by its dimensions, it’d been growing for about 10 years. It appeared to be full of fluid and was most likely the cause of my persistent headaches. It did not appear to be malignant, however.
“A neurologist would have to confirm this diagnosis,” he admitted.
I lifted my forehead from his desk to acknowledge that I’d heard him. Then I began to both cry and fight back my tears. I mean, you hear the words “brain” and “tumor” and you expect the worst. Marshall took my hand and squeezed it. The otolaryngologist placed his hand on top of ours and did the same. Struggling through his stammer, he assured me it was not as bad as it seemed.
“Besides, you have worse things to worry about. Donald Trump is president!”
I laughed, despite the pain, despite the grim prognosis, despite it all.
Yeah. Things could always be worse.
Go With the Money! Follow Your Insurance.
Feb 4, 2017
My South African medical Avengers gave me options and advice about where and how to seek treatment to remove my tumor. There were several skilled surgeons in the country who could easily remove it, “Or since your insurance is in the States, you could go back home and have it removed there.”
Besides my husband, I had only told a handful of friends about my diagnosis. All of them offered well wishes and prayer. Two of them paid for and arranged my flight back to America, and a mere 3 days after I discovered I had a meningioma I was on my way into the country.
There was a herd of cattle on the South African Airways flight all the way from Jo-burg to Dakar, something I was both horrified by and grateful for. One of the side effects of the tumor+medication+altitude was severe gas, so while I was sickened by the stench of cow manure in the hull, it concealed the stink of the intestine coiling gas I was releasing in my seat. I pitied the guy sitting next to me, but only a bit. He commandeered the armrest between us, so fart guilt-free I did.
I arrived in Washington, DC on the 5th. After we’d deliberated about where to get surgery, a friend of mine had already begun making arrangements for me to receive care at Johns Hopkins Hospital (JHH) in Baltimore. Johns Hopkins has a system whereby new patients are routed through a medical concierge who handles your case, the pertinent paperwork and functions as a go-between for the patient and the doctor(s).
My concierge was awful. The woman was mediocre in the performance of her duties at best and rarely engaged her brain in the execution of those duties. I’m not saying this to be cruel – it’s just true. In the week I spent working with her, I was no closer to getting surgery than I was on the beach in South Africa. After five days of emailing back and forth with her (and she would only respond to my emails at the end of the day just before she was leaving the office) it was determined that I could not see a neurosurgeon for a consultation until I’d had an MRI done. Why could she have not told me that on Day 2, at least? Despite knowing that I was staying in Fairfax, VA, she scheduled my MRI to be done on the JHH campus, 2 hours away from my address… and for February 20th, 11 days away.
By this time, I had run out of the steroids my SA doctor had given me to help shrink the tumor and had no prescription pain pills left. It being Black History Month, my confidence in John’s Hopkins was already low, given its history with kidnapping and experimenting on Black bodies in the early 20th century. Everyone around me was exasperated, which was making me anxious. My cousin (the one with the migraines) suggested that I go to the emergency room to seek care and eventually an MRI. I declined to follow the course of action because of respectability. Can I tell you, respectability rarely gets results? I decided to drop Johns Hopkins, their ridiculous process and inefficient staff entirely soon afterward.
I spent the next two days trying to find a neurosurgeon who would order an MRI for me so that I could get a consultation. No neurosurgeon would see me for a consultation unless I had an MRI, and I could not get an MRI unless I was a current patient…and I could not become a new patient without an MRI. It was frustrating and exhausting. Eventually, I ended up at an urgent care center and explained my dilemma.
“I just want the pain to go away,” I said to the attending physician. She was a compassionate woman who took on my frustrations as her own.
“This is just not right,” she muttered. She and an attending nurse worked diligently to get me in contact with a neurologist, who spent an inordinate amount of time talking about how “good my insurance was” and that it should be no problem at all for me to find care. He then wrote the order for an MRI and referred me to a neurosurgeon: Dr. Joe Watson.
Income Determines Outcomes
Feb 14, 2017
My MRI was scheduled for Valentine’s Day at 10pm. The out of pocket cost for the procedure was $2,746 payable at the time of service. I had just met with the neurologist on the 10th, which meant that if I did not have a spare $2700 plus hanging around, I would only have four days to raise the funds or forfeit the procedure. Fortunately, and by God’s good grace, Marshall has developed the traits of a miser and provides our savings account with regular infusions. After depleting all the funds in our health savings account, I paid the balance with money from our personal savings account. Mind you, this was my personal cost even with the benefit of “good insurance”.
I was grateful to finally get the ball rolling, but the whole 2-week ordeal was troubling to me. Accessing healthcare in America was proving to be less like Grey’s Anatomy and more like John Q. The ego, bureaucracy, nonchalance and indifference of the gate-keeping paper pushers on the front lines was staggering. Unlike civilized countries – like the UK, Canada and South Africa where the life and health of patient comes first – healthcare in America is a luxury industry, socioeconomic factors, such as class and disposable income dictates quality. It also dictates outcomes.
Once behind the Iron Insurance Gates, however, I found myself treated to an entirely different experience. There were no more frustrations. The course ahead of me was clear and well plotted, and I had my surgery scheduled almost immediately. On Wednesday, Feb 22nd, I was at Inova Hospital where I submitted myself to the administrations of Dr. Watson’s skilled hands and numerous metal utensils. The surgery took 5 hours to complete (only because there were two arteries feeding my tumor and Dr. Watson had to take care not to sever them and induce a stroke) and an hour later I was groggy and talking way more than I ought to have, but I was in my right(ish) mind. A sampling of the things I am reported to have said are:
“I’m hungry. Don’t feed me like a Charles Dickens orphan!”
“Donald Trump is possessed by a demon.”
“People like penis books, but they try to act like they don’t like penis books. They wanna judge me for writing penis books, but they like them….don’t they? That’s why I stopped writing penis books!”
“Mitch (who I had been calling ‘Chan’ until he corrected me. Mitch is of Philippine descent) has soft hands…soft hands for touching my boobies…and we’re going to find him a boy toy…”
“Emily Bronte does not get her due as a writer!!!!”
On February 25th I was released from the hospital. Had I still been screwing around with Johns Hopkins, I’d probably still be waiting for a consultation TODAY.
This is why I have been AWOL on the blog. I briefly entertained the idea of ‘bravely writing through the pain’, but I decided that doing so was. Not. My. Life. I wanted to spend the weeks that morphed into months focusing on myself, my family and the people who have shown me genuine care and concern in this span of time. Besides, not writing gave me the opportunity to do a lot more reading, an indulgence I rarely get to participate in anymore.
All the same I did miss you, MOM Squad and for those who reached out to me privately and personally, your words of encouragement and prayers have meant the world to me. If you ever find yourself in need of a neurosurgeon, I recommend Joe Watson. He’s not just a great doctor, he’s a good man. He also keeps a bowl of delicious candy in his office, which on their own are worth the trip!
Are you looking for copies of ‘Madness & Tea’ or any of my awesome/hilarious/colorful books? You can find them on the internet! And guess what? The internet will deliver them straight to you if you click this link.