Tag

breast cancer

7 Things I Wish I Knew Before Starting Chemo

Hands and feet in ice!

Chemo drunk is a feeling I can’t justly describe with words and adjectives.

I’ll take you back a bit: It’s December 21 and I’ve just finished my last chemo session at the hospital. I’m home, trying to have a conversation with my mom, but my eyes keep fixating on the velvet glow from a Yankee Candle. She says something funny and I laugh, a few seconds too late.

My mind is soupy and slow, like bisque that’s started to congeal. I hear words but my thoughts are lost in the emptiness of space. I meticulously toil over sentences, calculating each one through my head with the speed of an early edition fax machine. Something metallic catches my eye, the hardware on my mother’s purse, and now I’m hypnotized by how the silver reflects the flickering candle. It feels like my eyes are lost. They don’t know what to look toward, so they find light and drift to it drunkenly. My body is buzzing inside. I’m an old noisy refrigerator.

This feeling is nothing like alcohol intoxication. This is what it feels like to be dying. My cells, both good and bad, are being devoured as the poisonous cocktail of chemotherapy drugs flows through my veins. I’m being brought to the brink of death, just so I can rebuild. It’s war; destroy the enemy with brute force, but the victor suffers the casualties of battle as well.

You don’t want to be left wounded on the battlefield. Chemo is an experience we’re mostly unprepared to handle. My first few times were terrifying and I didn’t know what I was doing or what to expect. So, I’d like to share seven things I wish I had known about chemo before I started.

  1. You should drink so much water during chemo that you will feel like a water balloon. If you can’t drink water, try Gatorade, juice, or popsicles. I suggest you pack a lunch like you’re in third grade and your mom has just let you buy anything from the grocery store. Chemo is time-consuming and boring; knowing that you will have a few hours to sit around and eat whatever you want is something to look forward to.
  2. Ice your feet and toes! I’m shocked at how many hospitals don’t practice this method to prevent neuropathy. My infusion nurse would bring me two buckets of ice water and rubber gloves before chemo. I’d soak my hands/feet for one long, miserable hour during Taxotere (docetaxel) treatment. It’s not fun, but I never had any neuropathy or damage to my nails.
  3. You’re toxic. Your pee and saliva are toxic. The nurse will tell you that you need to flush the toilet at least twice and don’t share food or drinks with people.
  4. Chemo isn’t the only drug you’ll be getting. Steroids, antihistamines, anti-nausea and anti-anxiety drugs are just some of the usual pre-chemo meds. I took Emend (aprepitant), which is a three-day pack of pills that prevents nausea. I never threw up
  5. Dress warmly; hospitals are cold. Bring fuzzy socks or slippers for after your feet get an ice bath.
  6. If your hair falls out, it will start on the 14th day following chemo. And it kind of hurts. It felt like dull needles digging into my scalp. By the time I shaved my head, I just wanted it gone. I also was a little drunk (champagne), because I had a head-shaving party. … Which leads me to my last point. …
  7. You can still have a normal life. I had a party two weeks after my first chemo. I got drunk. I shaved my head. I cried. I sang Elton John songs with my friends until 3 a.m. I was alive. I was grateful. And I’m still alive because I never once let cancer or chemo stop me from living. You’re going to be fine. Drink the martini. Buy the fancy shoes. Keep on living your life, but with a tad more moxie.

My Love-Hate Relationship with Social Media

It’s 8:47 p.m. on a Monday. I flip open my personal laptop and the bright screen practically blinds my eyes in the evening light. Annoyed, I dim the screen’s light and go to Facebook. To be honest, I loathe Facebook, but I feel obligated to give it a brief scan to make sure I haven’t missed anything important like National Chicken & Waffles Day.

One headline jumps out at me. My heart starts beating steadily faster and I can’t decide if I’m going to cry or throw my laptop off the balcony. The post says that cancer isn’t real. Cancer is actually caused by a vitamin deficiency and is a government hoax. Vitamins. Well, Holy Shit Balls, I guess the answer has been under our noses all along?

The sins of social media are flourishing in an already credulous time. I’ve considered taking a break from it recently; it’s just all too much. I’ve seen people with GoFundMe links asking for money who will also post photos with their $4,000 handbag casually in the background. I’ve seen spineless comments made on Facebook that cancer is population control and we shouldn’t fight it. The lies, the negativity, the advertisements, the duck lips. And WE ALL DO IT, in some way or another. I don’t post an ugly picture of myself because I don’t want people to think I’m ugly. However, I DID look ugly in that photo. It’s social manipulation.

I try to project honesty through my social media, but I’m not always straightforward. I’m not as strong or healthy as I portray myself. I’m not as witty in person — I’m better at writing than I am at speaking. Social media is amazing, but lately, I find it leaving me emotionally exhausted. Why do I keep doing it?

I check my phone probably 80 times a day. I rapidly double-tap my screen on as many cancer survivor’s Instagram photos as I can. I make comments, responses, hearts. As I was clicking through my phone on Monday, I decided to check up on a young breast cancer friend whom I hadn’t seen post in a while. I searched for her name and looked at her Instagram. She died one month ago. My heart feels like broken glass scraping through my chest.

Those moments are the worst aspects of social media, but also the most honest, unadulterated ones. Because, I had never met her, but I felt so connected with her and some of these women that it doesn’t matter. We share an intangible bond that was manifested through the internet, with people we’ve never physically met. This is the pure, beautiful part of social media that keeps me encouraged. The relationships we build with other kindred souls is what gives meaning to life.

It doesn’t matter if your relationships are made through social media or real life. They don’t need to be defined by anything other than their value, because physical proximity is increasingly invalid in a globally connected world. Cultivate the ones you care about and spread virtue.

We tend to sit behind our glowing screens and become separate, and sometimes worse, versions of ourselves. As children, we’re taught to think before we speak. But today, we need to think before we post. To the people out there who spam me with unsubstantiated articles that cancer is fake, I invite you to come to Florida and tell me that cancer isn’t real to my face. I’ll take you on a field trip to the oncology wing of my hospital.

Social media is a blessing and a curse, but I’m challenging myself to live with less of it and with more integrity. Last weekend, I had so much fun going on adventures with my friends that I forgot to take any pictures! I encourage you to do the same this holiday weekend, because I’m going to wear a unicorn costume and light fireworks off the roof and not take a single picture. When it’s not on social media, you’ll never know if it really happened.

P.S. Put your phone down and go outside. Namaste.

Why You Should Never Ignore Your Intuition

I’m sitting in a dimly lit massage room, waiting for the masseuse to come back. A large clap of thunder explodes outside as the lights start to flicker between varying degrees of brightness. Aren’t massages supposed to be Zen, relaxing? This feels like the start of a horror movie. Oh God. How do I leave a note for somebody to please relocate my body to a dressing room at Neiman Marcus instead of the Massage Envy in a shopping center?

My thoughts are interrupted when the door opens. It’s the masseuse lady; she’s holding an iPad, reading over my health questionnaire I filled out moments ago. She has a slightly puzzled, sad look on her face as she reads about my colorful life as told by yes/no/fill-in-the-blank questions. It’s the same look I always get when people see that I had cancer: long puppy dog face.

I smile in an attempt to disrupt this pity party. “Yeah I had breast cancer, I’m fine now. Do you have one of those boob-pillow things? I can’t lay on my stomach very easily with these foobies.” The conversations that follow are predictable. The first question is almost always: “How did you know you had cancer?” Well, I didn’t know. I think that people ask me that because there is a preconceived notion that breast cancer makes you feel sick or it hurts. Like when you know you have a cold because you’re coughing and sneezing. Anna says she assumed that cancer made you feel sick, and that it mainly only happened to older, unhealthy people. Right now, take all those ideas you may have about who gets cancer and bury them. Let them be as dead as Juicy Couture tracksuits.

For two years I unknowingly had cancer. It was 2013 when I discovered that pea-sized lump. I sat paralyzed on the couch, Googling breast cancer for hours as waves of fear washed over me and made my body numb with anxiety. My intuition immediately told me I had cancer. I begged my gynecologist to squeeze me in for a sonogram. After the breast sonogram, I got a call from a very chipper woman “There’s nothing there, you got all worried about nothing!” Her voice was filled with phony enthusiasm, like saccharin and crushed Prozac. But I craved those reassuring words so much that I swallowed every promise she told me and buried the fear deep inside. After my second sonogram 6 months later, and again at 12 months I was told “You’re fine!” Did she really think I was fine, or did she just brush me off as a 28-year old hypochondriac? Was I crazy to question her about why a non-cancerous tumor was getting bigger? Why didn’t she recommend a biopsy? We trust these people with our lives, but in reality they don’t enjoy unearthing bad news just as much as we don’t enjoy hearing it. Maybe that’s why she didn’t dig, and neither did I. I now realize that a framed piece of paper saying that someone is a doctor will never trump a gut intuition.

Finally, I went to a different doctor who biopsied the lump, and well, you know the rest. I guess I had to grow a backbone and stand up for my intuition. It was either that, or start digging myself a grave. I could have buried my head in the sand, and listened to my doctors who all told me that I couldn’t get breast cancer because I was too young, too healthy, and had no family history of the disease. I’m not saying don’t listen to your doctor; I’m saying listen to yourself first and foremost and find a doctor who agrees.

I’m sure I’ll still get asked all of those questions a thousand times more, and I’m happy to answer them. But please educate yourself on the signs and symptoms of breast cancer. It could just save your life.

Namaste, ladies.

It’s 2017: Where is My Flying Car and Cancer Cure?

To infinity and beyond!

I dream of a future where we can take a pill and our cancer will be gone forever. Of a world that doesn’t have disease, and if we’re feeling sick we can just “reboot” our body like it’s a laptop. And when we need a new organ, we can teleport over to the hospital where a cyborg doctor zaps us with a space zapper thing to replace our old pickled liver with a fresh one that was grown using our own stem cells. Who’s coming with me?

Right now, we’re at the dawn of a paradigm shift where artificial intelligence and technology govern a future that we can’t even fathom.  The distant reality of what’s in store for our world may actually look a lot like The Jetsons with flying cars and robots (minus the racism, sexism, and kitschy futurism). But The Jetsons can’t even comprehend some of these absurd advances in science. Like, a cancer vaccine. The technology is close; Gardasil® and Cervarix® are HPV vaccinations that prevents certain gynecological cancers already. Or what if a bra could monitor our breasts for early signs of cancer? Well shut the front door, because the technology already exists! Medical and scientific research is on the brink of discovering remarkable technology; so get excited.

The World Health Organization predicts the amount of new cancer cases will rise 70% in the next two decades. It’s a terrifying number, and also the reason money is pouring into startup companies focused on developing oncology technologies and advanced cognizant search algorithms.

A.I. or artificial intelligence is the future of diagnosing and possibly curing cancer. The development of safe A.I. has given us as a more powerful, efficient human brain that can search thousands of sets of data using context and reasoning. I can barely walk and talk at the same time; but Watson–IBM’s “Jeopardy” winning supercomputer—can read through the equivalent of 1 million books in 1 second to generate a personalized, evidence-based treatment plan for my specific cancer. Watson can find new treatments and clinical trials that your oncologist may not be aware of. And it’s available to you now, your physician can request a report through Quest Diagnostics.

The applications for A.I. are endless. CureMetrix is a startup company using algorithms for image analysis to detect anomalies in mammograms and X-rays that have been missed by the human eye. While these technologies can’t and won’t replace a doctor’s human instincts, they do increase the patient’s care and prognosis.

In the future, maybe we’ll just rewrite our DNA? CRISPR-Cas9 is a controversial technology that allows scientists to do just that; edit DNA in a gene sequence by using two key molecules to cut into specific parts of the genome to forcefully mutate it. Theoretically, this could be used to reprogram cancer cells, although we still don’t understand why cells turn cancerous. That’s  where Microsoft’s big brain is coming to the rescue – they have announced a plan to “solve” cancer by identifying exactly why cells become cancer. If we can understand how a cancer cell mutates, we can probably fix it.

This all sounds wonderful, but A.I. and genetically modified cells is how the zombie robot apocalypse starts, right? According to Hollywood, yes. The same Hollywood that also made five Sharknado movies about a tornado with sharks in it, and like, thirty-eight movies about sparkling vampires. It’s possible that this technology could be used to create terminator robots, but many smart, rich people like Elon Musk are not going to let that happen.

In our lifetime, we may not have flying cars, or the ability to transfer our conscience into a robotic Chihuahua—but we will find a better solution for cancer. Chemotherapy and radiation will become antiquated treatments. I doubt humankind will achieve immortality anytime soon; but at least there will be a lot less suffering and disease. So, thank you to the scientists, doctors and smart people for your amazing work. 2017 is a strange time, but I am optimistic of the future. Also, I’d like to thank them ahead of time for my freshly grown liver, because this bottle of rosé isn’t going to drink itself tonight.

This article first appeared on breastcancer-news.com.

A Surgery Guide from Your Breast Reconstruction Sherpa

Get ready betches!

It’s no secret that I’ve had a few surgeries in the last two years (eight!). I guess you could call me a professional surgery-taker, a mastectomy aficionada, a reconstruction sherpa. Well, I’m here to share some of my do’s and don’ts of surgery so you can plow through the ordeal like you’re Michael Phelps at the Olympics.

If you don’t have breast cancer, you can still use this surgery guide because it mostly applies to all hospital procedures.

Be prepared before surgery. This is the most important point. I had major “chemo brain” once and forgot to pick up my prescriptions, pre-register at the hospital, check the time I needed to show up, set out extra clothes for changing at the hospital, etc. The morning was absolute chaos, and I spent the majority of it running around like I was being chased by a swarm of wasps. Take a few hours the day before your surgery to take care of business.

Get to know the nurses and hospital staff. Be kind to them, they literally have your life in their hands. Being nice goes a long way: an extra pillow and more attention.

Get comfy. You need to be prepared after your surgery with a cozy little recuperation spot at home. Do this ahead of time. Have your pillows, blankets, meds, books, etc. all in your little recovery nest so you can lie down and go to Sleepytown once you get home. My lifesavers after surgery were a neck pillow (those ones you wear on airplanes) so you can sleep sitting up and a back scratcher. The scratcher may seem ridiculous, but pain meds will make you itchy, and when you can’t move your arms very good, it’s torture. I also recommend a pad of paper so you can write down when you take your medication. Plus, you may want to send out notes via carrier pigeon or fly paper airplanes at your television, because why not?

Listen to the doctor’s orders. When you’re discharged from the hospital, you’ll usually be given a packet of papers from your doctor that look very unexciting. You need to read them! I’ve made the mistake of throwing them away once (because I’m real smart). The stack of papers will contain specific post-surgery instructions such as when you can eat, shower, return to work, go base jumping in your wingsuit, etc.

For a mastectomy, I have a few extra bits of advice. After surgery, you’re going to have drains that are sewn into your skin to collect fluid and blood. Yikes, I know. I suggest having a few dark-colored button up shirts on hand; that way you can change easily when you need to tend to the drains, and the dark clothing is for any spills. The drains will need to be pinned to your mastectomy bra, or you can buy little pouches that will hold them comfortably under your clothes, such as Drain Dollies.

The first surgery is always the most difficult, but I promise you it gets easier. You will have some setbacks along the way, but just remember that your pain and suffering are temporary. Happiness, joy, pleasure – these things do not leave behind a scar, but pain does because it is transformative. We grow and learn from distress. When I look down at my scars, I’m reminded of the torture that cancer generously imparts on the physical body, but I can’t help but smile because of the inner strength it gave me.

You’ve got this, ladies. Surgery is tough but we’re tougher. Now raise that back scratcher up in the air like a sword!

Namaste, pink sisters.

This article first appeared on breastcancer-news.com.