Lessons from my Brain Tumor, part 5

If you haven't read the beginning of my brain tumor story,

you can read part One, Two, Three, and Four of the story by clicking the links.

By late 2005, it had become easy to ignore my brain tumor. Since my radiation treatments had finished in late 2002, I’d gotten into a routine and adjusted to life with a brain tumor. And because something like a brain tumor isn’t a very visible condition, it was easy for my friends and family to forget about it somewhat as well. After my surgery in early 2006, however, friends and family dropped back into the habit of treating me like a fragile, porcelain doll. By the time we moved from California to Maryland in January of 2009, I was tired of being “the lady with the brain tumor.”

I had a fresh start, with people who didn’t know anything about me, and I decided to keep the news of my brain tumor as private as possible. I made my husband and children promise that they wouldn’t tell anyone about my tumor, and I decided that, other than the regular follow-up doctor’s appointments I knew I’d still have to endure, I would ignore my tumor and pretend that life was completely normal.

Because there’s really no such thing as “normal,” but brain tumor or no, I wasn’t going to get any closer to “normal,” and I was tired of being defined by something I had no control over. And my amazingly-supportive family must have realized how difficult it was for me, because they agreed to my decree without a single argument.

So we drove cross-country, from California to Maryland, and I declared myself “brain tumor free” as we crossed the border into our new home state.

In real life, I couldn’t ignore the issue as much as I wanted to. When my new friends began to worry about my frequent dizzy spells and balance issues, urging me to consult a doctor, I had to admit that I already knew the cause for my odd symptoms, and I let them in on my secret. So a few, very select, close friends knew about my health issues, but I didn’t broadcast my tumor, and my children were true to their promise. They kept my secret, and I got to enjoy life as “Veronica Bartles” again.

I was no longer “that girl with the brain tumor.”

I enjoyed my new tumor-free status so much, in fact, that I didn’t put up much of a fight when the neurologist I was assigned to for my follow-up appointments declared (without consulting the medical records I provided): “You don’t have a brain tumor. You never did. And I’m not one to say your doctors in California didn’t know what they were talking about, but…” He dismissed me from his office. Told me he could prescribe thirty-days’ worth of muscle relaxants to help with my muscle spasm issues, and indicated that if I persisted in hypochondriacally holding to the belief that an imaginary tumor existed, I should seek help from a mental health professional.

I tried a few times to get a referral to another doctor for a second opinion, but when the referral coordinator explained to me that this doctor was the only option authorized by my military insurance provider, I decided not to keep pushing the issue. After all, I wasn’t exactly dying. And I was totally ready for a break from the constant tests and follow-up doctor’s appointments. And it was really nice to play make-believe for a little while.

Yes, I worried from time to time. Like when I woke up one morning and literally couldn’t get out of bed, because my muscles simply wouldn’t respond to my attempts to move. (Lying in bed, paralyzed, for three hours, while your mind races through every “what-if” hypothetical scenario is REALLY not fun.) Or when my kids started daydreaming about what they wanted to do/be when they grew up, and I wondered “Will I still be here when my children are grown?” And every now and then, I thought that, maybe, I should push again for an appointment with a competent doctor. But I was enjoying the “brain tumor vacation” too much to ruin it by rocking the boat.

Until my husband got orders again.

In April 2012, we received word that we would be relocating to New Mexico. And I had to gain medical clearance before we could move. Which meant I had to provide the military medical coordinators with copies of my medical records, including the reports for the follow-ups I should have been having all along. Reports that didn’t exist, because I didn’t push the issue when Dr. Incompetent dismissed me.

After a three-month process, which included contacting all of my doctors from California and coordinating a plan for future care with the military group in New Mexico, I finally received the required medical clearance paperwork, along with a strong reprimand from the military medical group and orders not to allow my follow-up care to slip through the cracks again.

Determined to “be good” this time around, I made an appointment with my primary care doctor as soon as we got to the new base in New Mexico. And he told me that it was pointless to bother with follow-ups on the brain tumor, since I’d gone more than three years without follow-up appointments while in Maryland and nothing bad happened. He advised me to take more multi-vitamins, and he said we’d revisit the issue only if my symptoms got bad enough to put me in the hospital.

I switched to a different primary care doctor.

I feel like I’m back to square one, fighting to be taken seriously by doctors who are determined to believe that my medical issues are all in my head. (Duh! They totally are!! That doesn’t mean they’re imaginary!)

After a LONG conversation, where I had to go over the whole story again and totally ended up in frustrated tears, I convinced my new doctor to put in a referral to a neurologist. I suspect that he put in the referral simply to get the crazy, crying, basket case out of his office. And you know, I’m totally okay with that at this point. If I have to resort to tears to manipulate the doctors to listen, I can pull out the tears. (I have my first appointment scheduled with the neurologist next week. Fingers crossed and fervent prayers that it will go well!)

The primary care doctor also referred me to a dietician and another doctor to discuss my weight (after seven years of trying multiple diet and exercise plans, I still haven’t been able to lose the weight that I gained while on the steroids – I’ve about given up on ever looking beautiful again, but I’m not above grasping at straws, so I happily accepted these referrals). Unfortunately, this new doctor walked in, took one look at my overweight body and jumped to conclusions. Obviously, I must stuff my face with junk food 24/7, and if I would only get off my lazy butt to exercise once in a while, I could bring my unhealthy weight under control.

After more than half an hour, trying to get this doctor to hear me, I was in tears again. At which point, she declared that I was obviously depressed, and if I wasn’t willing to make appropriate lifestyle changes, she couldn’t understand why I’d even bothered coming in to see her.

I have to admit, I felt totally betrayed. I’d gone into this appointment full of hope, certain that I was going to meet with a partner, who would help me try to find an option I hadn’t yet tried. Instead, I felt like I was locked in a room with that mean girl from high school, who made herself feel superior by pointing out the flaws and weaknesses of everyone around her. And by the time she finished telling me that I was fat because I was lazy and suffering from depression and she couldn’t help me because I wasn’t willing to do anything to help myself, I couldn’t stop crying. I left her office and cried for the next three days.

And then I dried my eyes and took a deep breath and got back on the treadmill to keep moving forward. Because quitting simply isn’t an option.

But moving forward doesn’t mean I have to keep beating my head against a brick wall.

Perhaps, it’s time to take a new approach.

My particular brain tumor is one that likes to camouflage itself. It hides from the normal scans – and even the more in-depth scans. Even the doctors who really knew what they were looking for had trouble seeing it.

And my quality of life really isn’t that bad. Yes, I have frustrating issues. I would love to be able to consistently control my own muscles, and trust that my arms and legs and hands are going to work when I need them to. But even when my brain-tumor-inspired quirks pop up, I muddle through. I’ve been dealing with these issues for years. And I’ve proven time and time again that I can do so much more than I thought I could.

But the thing is, there isn’t a magic pill that can suddenly make me “all better.” And even if the doctors decided to open me back up for an additional surgery to remove the remaining tumor, there’s no guarantee that it would fix everything. So I have chosen to stop fighting.

No, this doesn’t mean I’m giving up. I’m not planning to roll over and die. I still expect to live for quite a while yet. But I’d rather live my life, whether it’s for the next sixty years or the next sixty minutes, enjoying my friends and family and being grateful for the blessings I have in my life. I’m tired of fighting to make people “take me seriously.” You can’t force people to care. You can’t make people love you. And if I fight hard enough, I might be able to force people to work with me on my terms, but it won’t be a pleasant experience for anyone involved.

So the sixth and “final” lesson I’ve learned from this brain tumor is this: Life doesn’t come with any guarantees. I may not always be able to count on the people I expected to count on, but sometimes, the people I never expected to be there for me will step up in surprising ways. I may not always be able to be where I wanted to be, but sometimes I might find myself in a place that’s even better than I imagined. I may not always be able to do the things I want to do, but I can do the things I need to do. And I have a team of hundreds, maybe thousands, of friends and family members who have my back when I’m not strong enough to do it on my own.

Catch up on the story by reading Part One, Part Two, Part Three and Part Four.

Update!! Read the latest on my Brain Tumor Saga here.