Lessons Learned from My Brain Tumor: Update!

I know I said that last week’s installment was the end of my brain tumor story (If you missed reading the story, you can catch up now! The full story is broken into several parts: 1 / 2 / 3 / 4 / 5), but I met with my new neurosurgeon this week, and I felt I had to give a quick update…

For about a week prior to my appointment, I practiced my approach. I imagined the scornful way I would probably be treated, and I rehearsed the way I would explain my symptoms without resorting to tears. I told myself that, if I could get through this appointment, I would be able to avoid any further follow-ups for the next few years… or however long it would be until I had to go through the military medical clearance process for our next move. And, I decided, if this doctor insisted that I was imagining things, I would demand that he put it in writing, so I could make the military clear my medical restrictions file. If I was only “imagining” my tumor, after all, I shouldn’t be required to keep going in for follow-ups for it, right? And it shouldn’t prevent us from any overseas assignments, either. (I’d love to be stationed in Hawaii or Europe… but they won’t allow us to have an overseas assignment, as long as I still have a brain tumor.)

So on Thursday afternoon, I went in to see Dr. Yonas, the head of the neurosurgery department at UNM. As I sat in the waiting room, I pulled out the manuscript I’m reading for one of my critique partners and forced myself to relax. There was no point in getting all worked up over this. One way or another, this was going to be the end of it. And so I didn’t care what he said to me. I’d already decided I was done. And so I told myself that the butterflies working themselves up into a frenzy in my stomach were irrelevant.

But I was totally lying to myself, and I knew it.

The nurse brought me back to the examination room and took my vital statistics (no surprise, my blood pressure was a little high), and then she left me to wait for the doctor…

After an eternity, a doctor came in to speak with me. It wasn’t Dr. Yonas, but a resident whose name I didn’t quite catch. And he looked almost as nervous as I was.

Great, they didn’t want to deal with me at all, so they’re pawning me off on some incompetent newbie, who probably hasn’t even looked at my file and won’t listen to a word I say.

I took a deep breath and put away my e-reader.

“I have been going through your file,” he said, “but it’s so thick that I’m having trouble pulling out all of the relevant information. I thought you’d probably do a better job of summarizing it all for me. Would you mind telling me about your tumor? When and how did they discover it?”

When I nodded, he lost his nervous look and pulled out a piece of paper and a pen and sat down to listen to my story. A few times, as I told him the same story I’ve been telling you, he stopped me to ask for clarification and further detail on one point or another, prodding me for dates to fill in the timeline and specific symptoms I experienced. He didn’t contradict me or roll his eyes. He just listened, and asked questions, and took notes. Then, he ran me through the normal neurologist physical exam stuff… testing my reflexes, checking my balance, having me follow his finger with my eyes, watching me walk across the room and back, poking and pinching my arms and legs to see if I could feel it equally on both sides. (I couldn’t feel the pressure equally, by the way. – I hadn’t realized how much my left hand and right leg were still numb until this appointment. I guess I’ve gotten so used to dealing with the loss-of-sensation that I didn’t even know how much I’d adapted.)

After I finished telling my story, and he finished the physical exam, the doctor took his (now completely full) piece of paper and left the room. (He explained that they needed to finish looking over the images from my MRI scans, to get a clear picture of what we were dealing with, and he would be back soon.)

I spent the next several minutes trying to concentrate on the manuscript I was reading instead of worrying about what he might be saying about me.

A million years (or at least 10 minutes) later, this doctor and an older man, who introduced himself as Dr. Yonas, came back into the room. Dr. Yonas asked me a few more questions to clarify the tumor timeline and the symptoms I’ve experienced, while the resident stood awkwardly across the room. (This is when I realized that the resident’s nervousness had nothing to do with me. He seemed almost in awe of Dr. Yonas.)

When he was finished quizzing me, Dr. Yonas sat back and shook his head. “When they did the surgery, they didn’t completely remove the tumor, did they?”

“No,” I explained. “But they got 60% of it.”

“So they left almost half of it. And then, afterward, you had radiation treatments?”

“No. The radiation treatments were before the surgery. 6 weeks, 5 days a week. They said that was the maximum amount.”

He explained that the latest MRI scan looked virtually the same as my scan from 2008, back before I left California. And I braced myself. I held my breath and bit my lip, determined not to cry when he told me that I was imagining my symptoms, as I was certain he was getting ready to do.

“Your symptoms,” he said, “are exactly what we’d expect from a tumor like yours. Straight out of the textbook. And I’m so impressed with the way you’ve adapted to be able to handle them. You’re amazing.”

He continued to explain that, because I was handling everything so well, there was no need to pursue additional, serious treatment measures. “I’d suggest a new MRI every 2 years or so, but I’m your neurologist on-call, if you need anything in the meantime. So what can I do for you today?”

I took a deep breath, trying to swallow my disappointment. I was being dismissed once again. I shrugged.

“No,” Dr. Yonas said. “I mean, what can I do to help you? What symptoms are you having that you haven’t been able to adapt to? What can I do for you today?”

I told him that the biggest issue was the constant pain I had from the intense muscle spasms I experienced, and he smiled. “Why don’t we try Baclofen? It’s used to treat muscle spasms, like you’ve described, in patients who have experienced spinal cord injuries.” He shrugged. “Which is basically what you have, since your tumor is in the brain stem. Would you be willing to try it for a month? Keep a detailed record of how you’re feeling, and come back to see me in four weeks?” He gave me his card. “If you have any problems in the meantime, just give me a call and you can come right back in.”

Then, he shook my hand and asked the resident doctor to write the prescription for me, and left the room. (As I left the hospital, I glanced at the card he gave me and noticed that Dr. Yonas was listed as head of the neurosurgery department. I guess that explains why the resident appeared to be in awe of him, and why the nurse sounded so impressed when she realized I was being seen by Dr. Yonas.)

I filled the prescription on my way home and took the first dose Thursday afternoon. And since starting this new medicine, I’ve had only 3 minor muscle spasms. For the first time in years, I’m not in constant pain!

And so lesson number seven is almost the same as lesson number one: Don’t give up! You may go through days, weeks, months, or even years where no one believes you, and you feel like you have to fight your way through at every turn, but eventually, things can and will get better, if you just keep going. And in the meantime, latch onto the friends and family who are there for you. Remember that you’re never alone. You always have someone on your side, and eventually, you’ll make it through.

 

And the “bonus lesson” learned? My story isn’t over. Right now, I’m living “happily ever after,” but I realize that there will be more trials ahead. There always are. And when I find those bumps on the road, I can move forward with confidence, secure in the knowledge that, even though there will always be more trials to come, no troubles will last forever. And I’m pretty amazing. I’ll adapt. I have my family, friends and the Lord on my side, and whatever comes, I’m strong enough to get through it.