Why I’ve Been Avoiding Your Calls

As a writer/ content creator, I try to keep the BS to a minimum and get right to the point.

So, here it is.

I’m a little cancery again.

Here’s what went down:

After I finished chemo last September, I went to Cedars every three months to get my blood monitored. They test my CA-125 (apparently it’s a protein, cancer antigen 125) which acts as a tumor marker – the higher the number, the greater chance of cancer. A normal person will have between zero and thirty. But since I’m so high risk (thanks to the BRCA gene mutation), my handsome Rock Star Cancer Ninja, Dr. Li, doesn’t want me over twenty.

When we tested my blood in September, December, and again in March, my CA-125 was five. Great!

Then in June, the proverbial sh*t started to hit the fan. My CA-125 went up to eleven. Dr. Li said he wasn’t worried – we would simply repeat the test in six weeks. I’d recently adopted a new weight training routine, and inflammation can cause a false high with your CA-125, so I figured the elevation stemmed from my gym sessions. 

July rolled around and I breezed back to Cedars, confident that this round of blood work would show a lower number. Dr. Li called the next day and my CA-125 increased again, this time to twenty two.

He said he still wasn’t worried – it was too early for a recurrence. Plus, if it were a recurrence, the number would be in the hundreds. But if I wanted a CT scan for peace of mind, he’d sign off on it.

Yes, I wanted a CT scan.

I ventured into Cedars yet again, positive the scan would indicate that I’m fine. After all, this was just for peace of mind, right? Turns out, he spotted a little nodule next to my liver, in the same area where I had a tumor last year.

F*ck.

Dr. Li noted that the nodule could be scar tissue. Or something more sinister. We’d wait three weeks, then repeat the CA-125 test on August 3rd, the day I was scheduled for a pre-op to get clearance for my upcoming double mastectomy.

The next three weeks felt like three years.

Finally I went back to Cedars for another blood test. As my nurse inserted the needle, I wondered if she could sense my panic. Sweat pooled across my lower back.

Do I really have cancer again?

I sat by my phone for the next twenty four hours, spooning it as I slept. Finally got the call in the morning.

It was not a good call.

Dr. Li said my CA-125 shot up to fifty five. My double mastectomy would have to wait. We needed a PET scan ASAP.  He said he’d submit the order that day, so I should receive a call from the Scheduling Department soon.

A day went by. Then two. Then three. Turns out, BlueShield was taking their sweet time to approve my scan.

TEN DAYS later, I called Dr. Li’s office and said f*ck insurance, I would pay out of pocket. I couldn’t wait any longer. I got panic attacks. My mental health suffered. Each day was agony. And once I offered to pay cash, my scan was booked for the following day.

(Side note: my angelic Nurse Practitioner, Corina, saved the day at the last minute. She got insurance to approve my scan twenty minutes before my appointment, so I didn’t have to pay out of pocket, but this shows how awful insurance can be. To them, I was just a piece of paper on someone’s desk. But to me, this was my life.)

The scan itself went smoothly. But the anticipation ate away at my stomach lining while I waited for the results.

Four excruciating days later, Dr. Li called.

It’s cancer. A small tumor (3.8cm) nestled inside my liver.

So now what?

I have a consultation with my new Rockin’ Radiologist next week (who, incidentally, is just as good looking as Dr. Li. I think Cedars is smart for hiring hot doctors!). After that, we’ll schedule my tumor ablation (which, according to Google, is a “minimally invasive surgical method to treat solid cancers. Special probes are used to ‘burn’ or ‘freeze’ cancers without the usual surgery.”)

I’ll recover for a week, then…we start chemo again.

<this is where I usually stomp my foot on the ground, like an angry toddler>

As much as that sucks, there are some poignant silver linings about this situation, compared to last year:

  • Chemo is only once a month, versus once a week
  • I only need four to six chemo sessions, versus eighteen
  • I’m not getting the evil chemo drug that made me so sick last time
  • I’m not getting the evil chemo drug that made my hair fall out last time
  • The little tumor is not a “new” cancer; it’s just some leftover cells that didn’t get eradicated last year

OK, now you’re all filled in.

That’s why I’ve been dodging your calls, avoiding your texts, duct taping my door shut, and returning your mail. Just kidding, I never get mail. But I’m planning on rejoining your species sometime next week, so I’ve got to sign off and start doing my hair. See you soon.

Getting “That” Phone Call And Eating My Words

Real talk: I’ve had a draft of this post written for awhile, but each time I sat down to type, I suffered a Code Red Meltdown, shed a few hundred tears, and threw my laptop across the room.

I recently posted about the power of fear, and not letting the “F” word take control.

I confidently believed everything I said. Stay positive. Don’t let the fear win. You got this, girl! <Snap your fingers in a sassy “Z” formation>…blah blah blah.

Then I got one of “those” phone calls.

The type that activated my upchuck reflex. That promptly shattered all the empowering BS I just spewed from the digital mountaintops.

“We got the results…and your CA-125 doubled again.”

Well….sh*t.

(For reference, a CA-125 test, also called a tumor marker, measures the amount of cancer antigen 125 in your blood. A CA-125 test can monitor certain cancers during or after treatment, and the lower the number, the better. I get tested every 3 months.)

Fighting the urge to simultaneously vomit, sob, and inhale a large pizza, I asked my handsome oncologist if I had a recurrence. Dr. Li said probably not, it was too early for a recurrence, but something seemed amiss. Certain things like inflammation can cause a spike in your CA-125, and I adopted a new weight training routine a couple months ago. Could that be it? Maybe, maybe not.

Suddenly all my upbeat, empowering advice came crashing down and pistol-whipped my psyche. A proverbial “Hold my beer” from the universe, if you will.

I booked a CT Scan. I figured the scan would show that my belly looked spotless, tumor-free,  and ultimately give me peace of mind. I chugged the bitter mocha-flavored oral contrast and hopped into the CT tube, half-excited, half-terrified.

The next 24 hours ping-ponged between I’m totally fine and OMFG I CAN’T BELIEVE THIS IS HAPPENING AGAIN.

Finally my handsome rockstar ninja oncologist called…and it was another one of “those” calls. The CT scan indicated that a little nodule had snuggled up next to my liver – the same spot where they removed tumors last year.

Now, before we all start panicking and planning my unicorn-themed funeral, let’s focus on the fact that this nodule COULD just be scar tissue. But is there a small possibility of something scary? Yes. So the next step is to repeat the CA-125 in 2 weeks (just a handful of days before I get cleared for my double mastectomy – beautiful timing, right?).

So this became a waiting game. I hate waiting. The uncertainty sucks. I’m desperately trying to stick with my “Keep On Smilin” demeanor but I’ve realized it’s ok to fall apart and feel scared. (So let’s all give a hypothetical middle finger to my “Rah rah rah, positivity rules” blog post.) And sharing this info is cathartic. After all, as I learned from Sex & The City – when you have information you don’t want, the best way to get rid of it is to pass it on.

Consider this passed on. Thanks, Miss Bradshaw!

Chemo Supremo: 10 Truths I Discovered During Chemotherapy

“We’re going to start chemo next Friday.”

Those words still haunt me. I was sick with fear, sitting in a little room at Cedars Sinai with my family and my rock star oncologist. I had just gotten the worst news of my life (more on that here), and now I was told that we’d begin chemo treatments in just 7 days. 7 days?! That wouldn’t be nearly enough time to digest this horrendous news! I wanted at least a few weeks to wallow in self-pity (and stress-eat a hundred boxes of Girl Scout cookies).

But one week from that day, I would begin pumping poison into my body to attack the nasty little tumors that had taken up residence throughout my belly. One week from that day, I’d have to watch my hair fall out, watch my teeth disintegrate, watch my nails fall off, and watch my body slowly deteriorate. Or so I thought.

Everything I knew about chemo I’d learned from movies, the Hallmark Channel, and Sex & The City. I figured that the chemo ward would consist of one big open room, where the patients sit next to each other, crying, vomiting, and meeting eyes with that, “Can you believe this sh**?” expression.

My perception was way off.

I was shaking and terrified going into my first chemo sesh. I had brought 2 sets of comfy clothes, books, an iPad, snacks, lunch, water, my laptop, and a pillow. The nurses were amused by how much I’d overpacked. A couple hours into that initial appointment, I began to relax and saw that chemo wouldn’t be as bad as I had anticipated.

18 sessions later, here’s what I discovered…

1) It’s more uneventful than you think.
You know those days when you stay home from work with the flu? The ones where you make a fresh dent in the couch from binge-watching Netflix? Chemo is kinda like that, except you’re in a soft chair (or bed) and hooked up to a loud beepy machine. It’s sorta relaxing, sorta boring, and very uneventful. My iPad got lots of use as I plowed through Weeds, Nurse Jackie, Silicon Valley, Ray Donovan, then Silicon Valley again.

2) It doesn’t hurt.
In fact, you don’t really feel anything. Except maybe sleepiness. At the beginning of each treatment, you’re given a small cocktail of drugs (usually a steroid, an anti-nausea medication, and something to help you mellow out – for me it was Benadryl or Ativan). But I never experienced any pain or discomfort.

3) Your nurses are heroes.
Not all heroes wear capes, but they do wear scrubs. I quickly became infatuated with the guys and gals that took care of me during those dreary days. We cracked jokes. We laughed. We talked about my cats. They showed me iPhone pics of their dogs. Without their constant cheeriness, my ordeal would have been a whole lot darker.

4) Costumes make it fun.
Well, maybe not fun, but certainly less scary. I mean, can you really be scared of something while you’re wearing a coconut bra? Or rocking a tiara? Or a vampire cape? Other patients would come to my bay and tell me they loved my outfits. Costumes made me smile, and they lightened the mood for everyone. 

5) It’s not nearly as depressing as it’s depicted on TV.
Before this whole adventure, I envisioned the chemo ward as a sad space filled with feelings of desperation, hopelessness, and bad snacks. Thankfully, it was the opposite of that. The snacks were good. And the ward was full of kindness, empathy, and positivity. Everyone there is doing everything in their power to help you heal. Oh, and did I mention therapy dogs!?

6) Everyone reacts differently to the side effects.
There are a lot of variables that determine how your body will handle chemo. Your age, your health, your cancer type, your chemo type, and so on. I’d been worried that my nails would fall off, my teeth would fall out, and I’d morph into a frail fragile little mess (note to self: stay away from the blogosphere). But thankfully, other than some nausea, hair loss, and strange pains, nothing too bizarre took place.

7) The worst thing to fear is fear itself.
When I got my diagnosis, I had 3 major fears: shaving my head, having surgery, and enduring my first chemo session. But when it was time to bid adieu to my hair, my stylist blasted some girl power tunes and we made it fun. When it was time for surgery, I rocked a rainbow wig and took some hilarious selfies. And when it was time for my initial chemo appointment, I befriended all the nurses and giggled my way through the day. I realized that all my fears were unfounded and there was really nothing to be afraid of.

8) It affects you mentally.
I was totally prepared for the physical side effects of chemo, but I wasn’t prepared for the mental ones. I woke up one morning and the world seemed bleak and gray and I wondered if I’d ever feel happiness or fulfillment again. All I could focus on was the dullness and negativity soaring through my mind. After many boxes of tissues and phone calls with my mom, the rain clouds disintegrated and my sunny demeanor peeked through once again. 

9) It’ll be over before you know it.
Back in April, I thought this would be the longest year of my life. That the days would tick by painfully slowly. And sometimes they did. But soon a week went by, then 2 weeks, then a month, then a few months. I tried to pack in as much fun as I could, like movies, a new pair of shoes, dinners with friends, and afternoon walks. And then BOOM – you’re in the home stretch.  

10) When you’re finally finished, it’s the best feeling in the world…and also one of the weirdest.
During treatment, you feel a sense of safety. You have doctors and nurses and hospital staff surrounding you all the time. Then once you complete your final chemo session, you start to wonder, “Now what? Do I just sit back and hope that cancer never comes back?” It’s a strange transition. You go from feeling sheltered to feeling exposed. Some days are riddled with anxiety and some are riddled with Thin Mints cookies. But all of them are days worth living.