Dr. Doom
Well, turns out Neurologist #1 was right. When you have a serious illness that needs extremely specialized treatment, the Internet is your enemy.
It's barely five minutes after we return home from the doctor's office. Bryan and I are sitting on the couch, laptop balancing equally across both of our laps. Here we go: "low grade glioma." Our mental state is beyond fragile. In a span of 24 hours, we went from thinking we have 50+ years to live with (and manage) Multiple Sclerosis. Now we were dealing with an entirely new and unknown (and in most circles, unspoken) entity: a brain tumor. I could barely say the words. Forget about "brain cancer;" I'm barely ready to type them, much less say them out loud. Once you say it out loud, it's real. For anyone who read my Facebook status in the days following our diagnosis, this may sound familiar: THIS CAN'T BE HAPPENING.
Is this an episode of Grey's Anatomy? Is Bryan now playing Izzy's character? Since when did our lives turn into an ABC primetime drama? Jesus Christ, this was out of control. My head was spinning.
Turns out a low-grade glioma is a slow-growing, rare form of brain cancer (even now, 2 weeks later and in a fantastic mental state, I cringe at the words). It is rarely cured and can be treated in three ways:
1. Surgery (not possible for Bryan)
2. Radiation
3. Chemotherapy
The articles we read take on a life of their own. We are in no shape to read anything about brain cancer. We are in a panic. Sheer, unabashed panic. There are articles about people with gliomas who receive treatment but only live two years after their diagnosis. There are articles about people who receive diagnosis and it's the beginning of the end. There are articles and studies about clinical trials that have yielded no results other than imminent death within months.
It was right there and then that I – 1000% – lost my shit. Just lost it altogether. Bawling hysteria. Bryan is crying. I am crying. We don't know what to do. We CANNOT wait three more days to see this "specialist." I tell Bryan to call the doctor's office. He says to me in a scared, shaky voice, "But they can't see us until Monday."
CALL THEM. The worst they can say is "no."
So he calls. At this point it's 1:00pm. Three hours after our appointment with Neurologist #1. They ask if we can be there by 3:00pm. (What happened to only being able to meet us on Monday?) We say yes. We would have been there at 3:00AM if that's when they would have been able to see us.
We sit. We wait. We leave. We drive in awkward silence, not knowing what is at the next intersection of this neurological nightmare. When we arrive at the "clinic" (this is my second experience with a "clinic" and I have vowed NEVER, EVER, EVER to go to a clinic again), we walk in and while it is a lovely building with a lovely staff, I can't help but lose it again. And for the people who know me best, this is unheard of. I am the "strong friend." The friend always there to lean on, to give a word of wisdom and when necessary, a swift kick in the ass when friends are acting unreasonable. I don't break down. I cry once a year. But this was too much.
This was something like I've never experienced. We are the youngest people in this building by 20 years. There are serious cancer patients everywhere. People with no hair, with bandannas, with Chemo IV drips coming out of their arms. Walking around like they don't have a care in the world. Telling jokes, talking about when they have to pick up their kids from school, hanging out and having a good time. It might as well have been the bar area at Houstons. But in my mind, my brain hadn't caught up. The fact that we had gone from "MS" to "brain lesion" to a cancer ward in five hours was unreal to me. I couldn't handle it. We're too young. We do NOT belong here. Bryan didn't belong here.
We sign in and they tell us to sit and wait. In the lobby, there's a Sports Illustrated with the USC offensive line on the front cover. We try to read about Rey Mauluga's draft chances, but why his hurt hamstring will hurt his chances of going in the first round. I read five sentences over and over again. I can't focus. I'm shaking. I don't know what's happening. I'm in shock. I look out the window and across the street at the people sitting at Cabo Cantina...what I would not give to be there, having a margarita and being, well, ANYWHERE but here.
Our doctor, who from this point forward will be named Dr. Doom, came out to greet us. He had a weird way about him and told us in a very grave, overly concerned voice that we would go back into the examination room and have a "nice little chat about what's going on." At this point, we hadn't seen an MRI. Hadn't seen exactly what was inside Bryan's head. Had no true notion of what was going on. We were being passed from doctor to doctor with no concrete information and it was excrutiating. Bryan and I are big control freaks, and this was unacceptable. We couldn't have been more out of control if we had thrown his chart out the window and onto Wilshire Blvd.
Dr. Doom leads us into the exam room and sits down on a rolling stool. He immediately rolls right up to us, places one hand on my knee and the other hand on Bryan's knee, and begins to apologize. PROFUSELY. "I am SO sorry. So, so, so sorry."
Our reaction: "Okay, can you please tell us what you're sorry about? You're freaking us out."
Honestly the rest of the meeting is a blur. He starts to talk about brain cancer, has his nurse take a sample of Bryan's blood, and brings in pamphlets for us to read entitled: "A patient's guide to uncerstanding brain cancer." He's underlining sentences and circling sections and talking, talking, talking...it might have well been the Muppets Show, because I don't remember a thing from it.
I have to stop here for a second and try to explain, if I haven't already, the extreme shock we were in. One week prior, our lives were perfect. We were planning a wedding. Talking about when to have kids. Listening to a Beatles playlist during breakfast on Sunday mornings. We had date nights. We joked about being 85 years old and being the cute old couple who had been married for 40 years and still held hands all the time.
We were about to be told we wouldn't have that long. In fact, we wouldn't have any time at all.
We were caught up in the moment. A terrifying moment. Dr. Doom is gravely rattling off the limits of treatment options, giving us less and less hope. All we have is hope. We're unbelievably positive, albeit sarcastic, people. So it is with profound truth and great sadness that I say a part of me died in the next moment when Bryan looked at the doctor and asked, "So what am I looking at?"
Dr. Doom's response: "Six months to a year."
I can't describe the feeling. I can't describe the terror. I can't describe what it is like to have someone say that your 30-year-old fiance, the absolute love of your life and person you waited your entire life to find, has been sentenced to death. I just can't do it.
Instead, I bawled. Hyperventilated. Shook. They had to lead me out of the exam room, Bryan followed closely, in absolute shock. For those that know him, he was as composed as ever. But in business mode. Death mode. Silent as a stone.
The doctor left us and told us to read the cancer pamphlet to make ourselves familiar with the disease. He went on to his next patient. No harm, no foul. I'm so hysterical I can't even breathe. They nurses try giving us water, but we can't choke it down. I sob to no one in particular, "but....we're....getting...married....in....two....months...."
The doctor walks by again and says gravely, "I know, it's just not fair."
This was the worst day of our lives. The low point. The time and date will be forever etched in my memory: Thursday, April 23rd at 4:30pm.
Now we had to go tell our families. And we had to fly up to San Francisco for my first bridal shower. To celebrate the beginning of what we had just been told was the end. How we got through it, I don't know. But we did. And once the shock wore off, Bryan and I did what we knew best: we went straight into business mode. That doctor was WRONG. And fade-in, fade-out, we found out a few days later he hadn't even been trained in brain cancer. He was a melanoma specialist in the body, not the brain. He was handing out death sentences on a part of the body he had never formally studied. I can't accurately express the rage we both felt. Bryan doesn't get mad or unreasonable. I get mad and unreasonable. But he was beyond pissed.
And to make matters worse, Dr. Doom didn't call us for a WEEK. While he was busy doing whatever the hell he felt was more important than figuring out treatment options for someone he told had less than a year to live, we were fast-tracked (thank God for family connections) at one of the nation's top neuro-oncology institutes. We not only got accurately diagnosed, but met with their neurosurgeons, their neuro oncologists and radiation oncologists. From the following Monday to Thursday, we were ready to start treatment.
It was then that Dr. Doom called Bryan. The NEXT Thursday. He wanted Bryan to come in and talk about treatment options. I had to leave the room because I couldn't even hear this man's voice without getting wanting to jump through the phone and strangle him. Bryan, in his own charmed way, told this "doctor" to shove it up his ass. He told him he was working with another hospital who took his diagnosis and his treatment options seriously, and he would be starting chemo and radiation with them as early as the next Monday.
There was a long pause. Dr. Doom then said, "well, I'm sorry we won't be treating you."
And that was that. Goodbye, Dr. Doom. Hello, to the best medical team we've ever met.
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