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