Large things, small things, and a teenaged girl named Charlotte

I work at a drug company. A large, large drug company.

Bernie Sanders would say I work for “big pharma.” He’s right. I do. I’m proud to work in pharma, I don’t view it as an insult, and I think it’s a shame some do. We do good work.

While I don’t consider myself a mere cog in the wheel, I am not a muckety-muck where I work, just someone doing my small part at a big company. I read drug promotions for health care practitioners and patients. I hope my edits and insight add value to the materials I review and make them more clear to the reader. Particularly if they are a patient, as most patients start out with no knowledge of disease states, adverse events, and contraindications. Being diagnosed with something life-threatening is frightening enough without being confused about dosages and side effects and whether or not it’s okay to eat grapefruit while you are on a medication.

Not only is my company quite large, most of the things associated with it are large, too. I work in an enormous building that houses thousands of people. We’re in “open space,” so there are rows of individuals on each floor with no walls between them. Nobody has an office, so it’s egalitarian. But there are always a lot of people about. Hit the cafeteria between noon and 12:30, and you’re going to stand on line, surrounded by humanity, to wait for your meal. 11:45 and 1:15 are much better times to be hungry.

Our lobby, airy and open, can seem like an airport or some other huge space. A friend who used to work with me said once about it, “The only thing that’s missing is the set of mastodon bones.” They’d fit pretty well, too.

The parking lot goes out a long way, and if you arrive much past 8:30 a.m., you end up parking in what I refer to as “The Hinterlands” or “West Mesopotamia.” You get a good number of your steps in walking to the office from that parking area, but heaven help you if didn’t allot enough walk time to get to your 9:00 meeting.

I tend to work late, and I have often gotten to my car as the sun is preparing to leave the sky, and when I look at our building from a bit of a distance I see how pretty it really is. I’ve taken photos of it in that light, sometimes posting it on social media with a cutline as vague as, “You know, it really is a pretty building.” I would go so far to say it’s beautiful.

Though I enjoy people well enough, and many of my immediate coworkers are people I quite like, I’m not one who has taken wholeheartedly to the whole open space thing. Even after 2 years, I miss my cubicle of old, at the edge of our floor and by a window, where we kept lots of plants. Though I appear on the surface to be friendly and outgoing, I’m actually quite socially awkward and uncomfortable being around people all the time. “Unconventional,” “noncomforming,” and “quirky” are words used to describe people like myself. “Weird” has been thrown about a bit, too…

In this expansive work environment, there are times that my quirky, weird, awkward self would like to feel a bit smaller, maybe even invisible. In my own corner doing my thing with not many people about, even though they are mostly people I like. Because maybe with the sheer number of humans around to be smiled at or acknowledged, it’s easy to stop feeling like an individual at times. Perhaps it’s me, but sometimes my purpose gets lost in these waves of people and my rote and regular smiles and waves and nods as I go to get a cup of coffee. Sometimes I’m just not up for it, though I’ll never stop feeling obligated.

So, yeah, I guess the point of all that is that the place where I work is big.

Since my last surgery and the subsequent medications I’ve been put on to deal with the repercussions of it, I don’t sleep as well as I used to. The other night I woke up after a few hours of sleep; the antihistamines I started taking to celebrate the impending arrival of spring do not keep me knocked out the way they once did. Grabbed my cell phone, checked the time, went on YouTube to watch my typical Dr. Sandra Lee cyst-removal videos until I was tired enough to fall back asleep. Under the Dr. Lee video I was watching, YouTube had a list of suggesteds, and one was a video by a British cancer patient named Charlotte. I clicked.

Charlotte spoke of being 18 and frustrated that her cancer was affecting so much of her life. Her vision was bad, and her left eye wasn’t working properly. She’d gained weight from her treatment and felt bad about her body. Her mother had bought her a cane because her balance wasn’t good, and she’d been reluctant to use it but now knew she would have to. She was upset because she’d had a seizure when she was 16 and had been prevented from learning to drive for 2 years, and just when that 2 years was about over, doctors found new tumor growth. She didn’t know if she would ever learn to drive.

Charlotte paused for her words at times; sometimes she just stopped speaking for a while altogether. Her sad expression spoke volumes, anyway. She was dealing with a hell of a lot for an 18 year old. One thing she said summed it all up: “I just want this cancer to go away.”

My heart went out to this girl dealing with so much. I went to her YouTube channel and put the videos in chronological order, and started watching from the beginning.

They started out with a more petite, more lively, 17-year-old Charlotte. She’d found out at age 16 she had a rare form of brain cancer. It was the day of her prom.

She’d had chemo and lost her hair, and it was growing in. She looked lovely with her short hair and frequently combed her bangs with her fingers. She’d spent 5 days a week over the past year going to the hospital for treatment. She paused at times to think about what she wanted to say. Charlotte was unrehearsed. 

Charlotte had been shy, but her cancer fight had given her the need to speak up and tell people about what it is like to be a teenager with cancer. To answer questions. She felt like most cancer videos were addressed to an adult audience, and she wanted to have something addressed to teens. And she loved fashion and makeup, and she loved cats. Of course, she did. Don’t many teenage girls love these very same things?

Subsequent videos, many filmed in Charlotte’s room, were about fashion and makeup, how to deal with hair loss. Showing off an outfit. Wearing a cute wig. Lamenting about not going to university and spending too much time inside. Explaining how going on steroids makes you put on a lot of weight quickly and that this had happened to her previously. And how it felt when she’d been in a car with a handicapped tag and people looked at her as if she were scamming for a parking spot. The joy of a new video camera for her YouTube channel.

And wanting to get back the time she’d lost, getting back the teenage years where she was being treated for cancer and not on vacation or doing things with her friends. She loved purses. She bought a lot of her tops at a placed called Top Shop.

Charlotte spoke about being reliant on her mom for so much when she wasn’t well. As a mother, it pained me to think of how her mom must be feeling to know her daughter was going through this. Is there a mother who wouldn’t put themselves in their child’s place if he or she had a brain tumor?

I continued to watch. Charlotte had suffered hearing loss from one of her early chemo treatments. She loved the Kardashians. She hated people telling her when she was bald, “Oh, your hair will grow back.” Yes, it would, but for the time being she was bald. She was a beautiful young lady, and she was beautiful bald, too. But no teenage girl wants to lose her hair.

There were a lot of videos to get through. I jumped around. Then I made a mistake, in my view, anyway. I was moving down and saw a video labeled as the last Charlotte made before she died. Had I been watching these as they were put up, I’d have been rooting for Charlotte in real time. I would want Charlotte to have a happy ending while she was hoping for it.

I did not want to see that video yet. I was not ready. In the earlier videos, Charlotte had so much hope and was so full of life.

I clicked on another further down instead. It must have been filmed after the very first one I watched. It was dark, and Charlotte was in bed. She was swollen up again, from steroids maybe. She says into the camera that the latest treatment is not working. She turns the camera off. In the middle of the night, Charlotte was telling the world that she was frightened. You cannot crawl into the computer, you cannot hug this person, and you couldn’t even if she were still here. You can’t make this frightened child feel better. There is nothing you can do. Nothing. And you want to.

In the last video she made before she passed away, Charlotte’s mother had to narrate. Charlotte was in a chair and only able to wave twice as her mother spoke of Charlotte’s hope, still, that medicine could heal her body. Charlotte could not even hold up her head.

The cancer that gave this sweet girl her voice to speak up for teenagers with cancer ended up stealing that voice, along with all of Charlotte’s other abilities.

Charlotte was hospitalized soon thereafter. She was 19 years old when she died. What killed her was a glioblastoma in her brain that then spread to her spine. It had developed from her original form of brain tumor that had appeared to be shrinking when the glioblastoma struck.

Her mother and brother still post videos to the channel; they have created a cancer charity in Charlotte’s name to help find a cure for glioblastoma.

In one video after Charlotte’s passing, her mother spoke of not wanting to leave the home they lived in because she felt like she was leaving Charlotte behind, but needing to replace all the bathtubs with shower stalls because the memory of Charlotte physically struggling to step into the bathtub was so painful for her. Something about her mother describing that was particularly unsettling and sad.

I want to watch all of Charlotte’s videos, but I cannot right now. It is hard to watch a young person have hope, get that hope dashed, and know that she will not get well.

When I think about what Charlotte wanted, to have those lost years back, was she really asking for anything so extraordinary? It seems to me a small request when a young girl asks for a year or two without cancer treatment to replace the ones where she’s had to endure it. It seems a small hope to wish to live to be 20 or 25 or 30 when you are 16 or 17 years old.

What Charlotte wanted really was not very big at all. I wish she had gotten it.

My large, large company makes cancer drugs, among others. At least one drug we manufacture is in clinical study right now, in combination with other therapies, for the treatment of glioblastoma. It’s an extremely aggressive cancer. The study will take time. Children like Charlotte do not have much time, but people are out there trying to give it to them.

This drug and others may have some success, may have some failures. Somewhere, I hope, is an idea in someone’s head at this moment that will pan out when implemented. That will shrink tumors and stop them from multiplying.

Somewhere out there right now is also a child who is carefree, but who in a few years will be sick with cancer. It is the sad and ugly truth, even though no one wants it to be. And when they are being treated and they say, “I want my years back, I want back those years I was treated and I want them to be free of pain and cancer,”  I want a doctor to be able to tell them truthfully that their chances are excellent and that that is what is going to happen.

It won’t help lovely Charlotte. But it may help ease her mother’s pain.

And for Charlotte and her mother and her brother, I will fake my smiles and greetings and continue to put up with a parking spot in West Mesopotamia and a cafeteria swimming with humanity. It is not that big a thing to do in order for the next Charlotte to get her small ask and get her years without treatment, to get her time at university, to keep her head of hair, to get to grow up without being afraid that her treatment is not working.

Rest well, beautiful Charlotte.

Charlotte Eades’ YouTube channel
To donate for brain tumor research

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s