Yep. It's true. I do.
But this blog is not about the tumor, which is most likely benign and very, very, VERY treatable (more on that in a minute). It's more about the journey, the process, and the story that is still unfolding.
I found out on Jan. 9. In an ironic twist, less than two weeks before, I read my friend Jolina's blog about her husband, Randy, who had just been diagnosed with a brain tumor. Having lost my mother to a benign brain tumor in 2004, I was acutely aware of the journey Jolina was walking, and my eyes filled with tears as I read. I told my husband, and remember asking him, "Can you imagine?"
Little did I know, we would soon imagine.
On New Year's Eve day, I woke up with a bad headache behind my right eye. I thought it was the beginnings of a sinus infection. Later that day, as I bent down to pick up Reagan, my vision went extremely blurry in my right eye. Blurry as in, I couldn't make out anything when I covered my left eye. I waited until my husband got home, took a nap, and when I woke up, everything was fine, and the headache was gone.
The following Saturday, the same thing happened, this time without a headache. It stayed blurry throughout the day, and when I woke up the next day, it was still just as blurry. During church, I asked a dear, dear friend of mine, Billie, to pray for me, and when she was done, my vision was back to normal.
Monday I went to an opthalmologist, afraid something was wrong with my vision. She tested everything, very thoroughly, and found nothing wrong. As what she described "an abundance of caution," she called my primary care physician, who scheduled an appointment, although the opthalmologist thought they were probably nothing more than ocular migraines.
My physician scheduled me for an MRI on Friday, Jan. 9. I stressed that we were leaving for vacation Monday, Jan. 12, so the results needed to be in the same day.
I knew it was not going to be good news when a nurse called me about another test I had, for my carotid artery, to rule out a stroke. She said that test was clear, and they had the results of my MRI, but the doctor would be calling me with those.
Tick tock tick tock.
But yet, in those few hours, I had peace. Such peace. It was a bizarre place of knowing something was about to most likely alter the course of my entire life, but having this very deep, very strong sense that everything was going to be okay.
She called a little after 5:00, and began hurriedly talking before stopping and asking where I was. I assured her I was sitting down and ready. She said they found a mass, behind my right eye. It looked like a meningioma, which is a common form of a tumor, and typically benign. She said she was just looking at the scans, but hadn't had a chance to speak to the radiologist yet. I asked her what we do now, and she said I needed a different kind of MRI. Since we were planning on leaving Monday, she hung up with me to call the radiologist, and see if they could get me in Monday morning.
Meanwhile, I frantically googled "meningioma," and found out that it is the most common form of brain tumors, has a 90% chance of being benign (with only a 2 to 3% chance of it being truly malignant), and can sometimes be left alone and just watched without being removed.
My physician called me back and said they had scheduled me for another MRI on Monday. I told her what I read and asked if she thought we could take a wait-and-see approach with this. She said most likely not because of its location in my eye.
Still, I had peace.
I called my husband, and then called my sister. I told Johnny when he came home it was GAME FACE ON. Whatever it was, however it had to be dealt with, whatever treatment looked like, I knew in the core of my being that I, and we, were going to be fine.
I also felt gratitude. I thought of my sweet, sweet cousin, Dwayne, who was diagnosed with a malignant brain tumor -- and how brave his fight was until the end. This ... this silly little two centimeter mass on my brain .. THIS was treatable. I was not immediately making end-of-life plans. I was going to be fine.
The next day, I found myself repeating those words to people over and over again -- people I called ahead of time and told the news. I felt the need to reassure them that I was fine. Because, while I know how scary the words are, I just knew that I knew that I knew that everything was going to be okay.
We decided to postpone our vacation by one day, so we could wait for the results of the second MRI, to determine that it was indeed a meningioma, and make sure it posed no immediate threats. So my husband went with me (and helped me breathe through the evil IV I needed for this MRI), and then we had dinner with sweet friends who kept Reagan while we were away. We were with them while we were waiting for the phone call from my doctor, and I'm so glad. So, so glad. I think that was probably the hardest part of the entire experience -- the waiting.
Finally, she called and said it was indeed a meningioma, behind my eye. She said I could travel, but I needed to follow up with a neurologist as soon as I returned. She also told me to go to the ER if I had another blurry vision episode, because I was at an increased risk of stroke because of where the meningioma was located.
So we packed up the next day and drove to my sister's house.
That trip to PA was one of the best I ever remember. After the roller coaster we had just been put on, the time with family felt sweeter. My husband and I had to cancel an overnight trip we had planned, when we postponed our trip for a day, but we still had one entire day in Philadelphia to ourselves, which was Heaven.
Truth be told, there were a few times during that trip when reality hit me, and I got a bit teary. But not the reality a brain tumor. That felt like more of a nuisance than anything else. But I'd wake up in the middle of the night, and think of all the people who had called, texted, sent e-mails checking on me, and the reality of the richness of my life is what made me emotional. My friends are truly, truly, TRULY the best, and I don't take that for granted. At least not anymore.
Physically, most of the trip I felt really good. At night, I started to get headaches -- sometimes mild, sometimes strong -- with very mild blurry vision. Like when you're at the eye doctor and they ask if A or B looks better, and it's a very minute difference between the two. But those episodes scared me at first, and I'd run up to my husband and stick my tongue out and then smile (stroke test). After a while, we realized it was happening when I was tired, and I stopped worrying about them as much.
We visited a neurologist the day after we got back, expecting to have a treatment plan, answers, and solutions for the debilitating headaches that were starting to affect every part of my life.
Unfortunately, he hadn't bothered to read my medical file that he had for a week and a half, thought I was there for blurry vision, and didn't know until after I was sitting in his office that I had a meningioma. He was extremely dismissive, spoke to my husband more than me, said my headaches were because of something called a scotoma (which he never really described what it was), gave me a long speech about the dangers of smoking and drinking coffee (which was relevant since I don't smoke), and walked out while I was still asking about my headaches. (Note: If you ever need a neurologist in Nashville, stay far, far away from Dr. Prasad at Heritage Medical).
So. Instead of getting answers, we left with more questions. I called my physician, who, appalled at his advice and lack of knowledge about my case, made an appointment for me with another neurologist. Unfortunately, she couldn't get me in for another month, so we had a month of waiting.
Meanwhile, my headaches were getting progressively worse. Much, much worse. Usually if I caught them early enough with enough ibuprofen, I could function. A few came on strong and without warning. I was very eager to meet with a knowledgeable and capable neurologist, who could get to the bottom of the issue, and ready to deal with it, however necessary, just to get rid of the headaches.
My appointment was scheduled for Tuesday, then canceled because of the Snow/Ice Apocalypse in Tennessee that virtually shut everything down. I was rescheduled for Friday, with a different neurologist, who had an opening in his schedule.
Thank God.
He, Dr. Fallis at St. Thomas Hospital, was as nice and kind and thorough and diligent as they come. It was a night and day different experience from my first neurologist. Dr. Fallis looked at my scans, asked me some questions, verified my name and date of birth, asked me some more questions, and then said, puzzled, that the tumor wasn't behind my right eye. It was actually in the back left side of my brain.
What was puzzling to him, and to us, is that he could see clearly on the scans, and show to us, that it was not anywhere near my eye, yet the radiologist had clearly labeled it frontal-something-something, which meant behind my eye. Even my physician had described it as in the wires of my optic nerve.
But the scan clearly showed it was in the back of my brain.
Which is a very, very good thing, because he said it's almost impossible to remove a tumor on the optic nerve without compromising your vision in that eye.
So, with that new information, we first discussed the tumor. It's still a tumor. On my brain. But one that might get to hang out there for a very, very long time. I'll have another MRI in six months, and he will measure its growth. If it hasn't gotten much bigger, he'll leave it there and I'll go back for another MRI in a year. If it has gotten bigger, it will need to come out, but he said it's possible it could come out with radiation, or, if it has to come out surgically, it's what he called a "chip shot," and said "any doctor worth his salt could take it out."
So, it's pretty easy to deal with, relatively speaking.
The headaches he said, are unrelated to the tumor, and it's even possible that the tumor has been there for a long time, and was just discovered because of the vision/headache issue. He asked if it felt like someone was poking me behind that eye, and I said "All. The. Time." That's how I would describe them to people. He believes they are due to nerve damage, which has become worse over time, and exacerbated because of my chronic insomnia, which means my body doesn't rest enough to heal enough. It could have been from my accident in 2009. It could have been from something that happened a long time ago, or it could have happened without any reason. He felt around my eye, which was very painful, and he said he could tell just by touching that there's some swelling back there. So I'm on steroids and muscle relaxers. Day 3 of steroids and I can tell a marked difference in the headaches already. Yesterday was the first day in six weeks that I didn't take any ibuprofen.
Thank God for intuitive and caring doctors.
As for how the scans were read one way by not one but two very capable doctors, before we found out that it was incorrect, and not in my optic nerve, I have two different theories.
One, both doctors read it incorrectly. That's possible. It feels a bit unlikely to me, but definitely entirely possible.
Or, a miracle occurred, and the tumor that was behind my eye -- as two separate doctors attested -- moved on the scan, and in my brain, because so many people prayed.
The truth is, a miracle happened either way, because life is one big gigantic miracle, if you ask me. Famed scientist Albert Einstein said, “There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”
Pretty much.
To me, a miracle happens every time Reagan gets up from playing with his toys to walk over to where I am, give me a hug, and say "Love you, Mommy." That's a miracle.
A miracle happens when I wake up every morning to a new day, when the sun rises with dozens of shades of oranges, pinks and yellows. When I am seconds from a car crash, but I miss it. When a friend calls at the moment I need to talk to someone, or when I look up at the sky and see billions and billions of stars, from galaxies millions of lightyears away.
A friend once told me he believed every miracle has a scientific reason behind it. I thought about that, chewed on that, and mulled that over for a while. But I, personally, think it's reversed. I think every scientific fact has a miracle behind it.
But, in the bigger picture, that's all kind of irrelevant. What I do know is this -- that two separate doctors told me there was a tumor behind my right eye, I had severe headaches in that eye, and we now know that those headaches were caused by nerve damage and not the tumor, which is actually in the back of my brain. The medicine the doctor prescribed has already greatly diminished the debilitating headaches, the tumor is going to stay right where it is for six months, at least, and maybe more.
It's all good. It's better than good. It's the best.
But, to be clear, I don't think that because what I thought was a pretty serious medical issue has now become much more manageable means just that "God answered our prayers."
Meaning, I could be prepping for surgery this week and God could still be answering prayers, just in another way.
One of the most hurtful things anyone ever said to me in my life, came from a professing Christian. It was not long after the death of my mother, and I was in that raw state of emotion, where everything felt topsy turvy and out of place.
We were having dinner and I was telling him about her and how difficult her death was, and he said that there must have been an unconfessed sin in her heart, or God would have healed her. When I stuttered and stammered and defended her life, he asked me if I had any unconfessed sin that made God not hear my prayers, which is why she died.
And we wonder why some people think Christians are absolutely crazy.
The truth is, bad things happen to good people, and good things happen to bad people. I don't for one millisecond believe that because my doctor gave me good news, that I did something good. Nor do I believe if he told me I had terminal brain cancer, that I did something bad.
But, what I do believe is that, for reasons I will never, ever, ever understand, at least on this side, I was spared, for now at least, from a potentially serious illness. I know all too well the dangers of a brain tumor, even a benign one, so I am not wasting one second being ungrateful. I'm so grateful. So very, very, very grateful.
As my friend Russell says, "We don't know 'how,' we just know 'that.'"
I have a brain tumor. And if it's only purpose was to remind me to be grateful, then mission accomplished. I am fairly certain I will spend the next several days, weeks, months, and maybe even years, starting my day with gratitude for another day.
One more thing: to everyone who has reached out to me, and to us, thank you. Thank you for loving our family in the middle of all of the uncertainty. Thank you for calling, texting, e-mailing. Thank you for reminding us that in all of this, we are not alone.
Sometimes brain tumors really are a gift.
