bad news

Cancer: WTF

Your friend might have more doctors’ appointments, tests, surgeries, and treatments than you ever thought possible. Here's how to be a help.


published_at: 08.06.2015 13:56
question:​

How will we get rid of my friend’s cancer?


With science! Your friend’s doctors will recommend the best course of action. You can be supportive throughout the process. The first step is understanding the basics.

What’s cancer?

Cancer is the uncontrolled growth of abnormal cells in the body. It refers to lots of different diseases, but basically, a certain type of cell goes berserk and tries to take over the world. Cells replicate way too fast and form tumors. The location determines the name of the cancer, but almost every organ and body part can get it —​bones, brain, skin, lungs, boobs, balls, butt, you name it.

Remember, we’re totally not doctors. We’re going to dumb this all down, not because science is boring (really, we fucking love science) but because we want everyone to understand what we’re saying. If it floats your boat, we encourage you to learn all you can about your friend’s particular molecular intricacies. And hug a doctor today.

• What causes cancer?

What causes cancer is a complicated question ­ we're not exactly sure what causes it. Whenever you hear that something causes cancer, it means exposure to that thing is correlated to a higher incidence of cancer. Here’s a partial list of those things:

  • pollution
  • radiation (from Chernobyl, tanning salons, or from the plain old sun)
  • smoking (anything)
  • excess alcohol
  • poor diet
  • infections (Hepatitis, HPV)

These icky things are environmental causes. It’s estimated that over​ 90% of cancers a​re caused by stuff around us. But there are outliers —​ Andy Kaufman never smoked, and he got lung cancer. Mick Jagger smoked for decades and he’s still shakin' those hips. Some people argue that most cancer is random. Life is weird.

The other 10% is thought to be correlated with genetic variations. If your DNA presents a certain mutation, then you're more likely to get a certain kind of cancer. Predisposition does not mean you'll definitely get cancer, but it might be cool to bump up the frequency of self exams and doctor visits.

• Lots of people have cancer

Kids can get cancer, teenagers can get cancer, yuppies and hipsters can get cancer. Even puppies can get cancer. On average, each American has about a 40% chance​of getting cancer during their lifetime. In the US today, 14.5 million people​have had or currently have cancer, and this year, about half a million people will die of some type of cancer. That’s over one thousand people dying every day from cancer in the USA alone. And on top of that, over one million people will be diagnosed for the first time. That’s a lot of people.

Worldwide in 2012, there were 14 million new cases a year (bigger than the combined population of Belgium, New Zealand, Jamaica, and Iceland combined) and they think there will be 23.6 million new cancer cases worldwide each year by 2030 (that’s equivalent to every single person in Australia).

Every year, more and more young people are diagnosed. We don’t know why these awful numbers are on the rise. Of those diagnosed in the USA each year, 85,000 people are between the ages of 15 and 40.

• So, what can I do to make sure I don't get cancer?

It sounds obvious, and you’ve probably heard it before but here they are: eat healthy, exercise regularly, keep your HPV and Hepatitis B vaccinations up to date, and avoid the things on that list up there. That’s a good place to start! Check out this article about appropriate cancer screenings for every decade from 20s onward.

As for antioxidants and other 'superfoods', some are beneficial and others are baloney. Stick to research papers. The next time a study is in the news, you should go right to the source to determine whether the headlines are sensationalist. Silly headlines.

Research is showing that a third of cancer deaths can be prevented, a​nd over 90% of cancers can be cured if they are caught early enough. So if you see something, say something, and be sure to make (and keep) annual appointments with the following docs:

  • your general practitioner, for an annual checkup and to keep your vaccinations up to date. _If you’re a girl or a guy under 26, get the HPV vaccine._
  • your dermatologist, for an annual screening to get each and every one of your moles checked. _If you have light eyes & fair skin, go twice a year. NEVER use indoor tanning beds, they should be banned (like they are in Australia!)_
  • your gynecologist, if you identify as female
  • your dentist

• Common treatments to slay cancer

There’s a lot of options, but be prepared —​each comes with a crazy list of pros, cons and side effects. Surgery is a a very common treatment, where the doctor will physically cut out the tumor(s) or slay them with laser beams. Drugs like chemotherapy will kill cells that divide rapidly, and immunotherapy will get your friend’s immune system to kill the cancer cells for it. And there’s radiation, which will zap your friend’s cells with X­rays.

The doctors will explain each process in detail. They’re going to do everything they can to help your friend get better. The best thing you can do is pick up where they leave off and build a great care team outside of the hospital.

• Tips for building a kickass friend­based care team

Friends make everything better. Especially smart, caring friends who know what they have to offer. Does anyone like to cook? Does someone have a load of spare time? Do you have a particularly rich and generous friend? Anyone like science? Look around at your people and start to figure out who will go to doctors’ appointments, who has time for burgers and milkshakes after treatments, and who can explain treatments and statistics. And if you suck at all those things, just show up and watch a movie.

If you’re going with your friend to doctors’ appointments, be prepared to keep it fun in the waiting room (gossip, Tinder, et al), hold their hand while nurses draw endless vials of things, and give hugs if there is bad news. Bring a book or your computer (lots of waiting rooms have wifi now!) because there will be endless waiting for your friend.

• What kind of notes should we take at doctors’ appointments?

If you have a flexible schedule and stay calm in stressful situations, the most helpful thing you can do is go with your friend to doctors’ appointments and take really good notes. Ask questions and make sure you both understand everything that’s going on, but remember, you’re there as backup for your friend, so don’t interrupt or make comments, just listen and be a great secretary.

Your notes will also come in handy when a new doctor asks your friend: “When was the last time you had a CT scan?”; “How many weeks have you been taking the orange pill for?​”; “What was the name of the doctor who did your third surgery two years ago?” You’d think these things are all stored in a little computer somewhere, but in fact, doctors rely on patients for all kinds of detailed and crucial information, so make sure it’s all written down and on hand, especially when meeting a new doctor. The crazy thing is that doctors see hundreds of patients every week. Be nice to them, not only because their job is very hard and very needed (and when does anyone ask them about their day?) but also because you’re going to be spending a lot of time together! The better you all get along, the more comfortable you’ll feel asking the right questions and making sure you and your friend understand the answers.

Your friend might also need a hand keeping track of meds, names, places, indications, contraindications and the endless parade of side­effects. Write down names of procedures and doctors, drug regimens, possible side­effects, drug interactions and all the other do’s and don’ts you might hear. Ask them to spell things out and define words that seem important.

Your phone is going to be a great tool. Apps like evernote will help keep your mind organized, and others like Mango Health, and online calendars are great to set reminders for appointments and medications. You can even record audio if you don’t feel like typing so you’re sure to catch all the details. Paper to­do lists and old fashioned pillboxes —​like the ones you thought were just for your grandparents​—​will also help your friend stay on top of everything. If you can keep track of all that, your friend can focus more of their time on getting better.

How are we going to pay for this?

Cancer is really awful. It’s also really expensive. Even the best insurance might not cover all the medical costs. There’s extra stuff too, like getting to and from appointments, buying organic groceries, going to yoga...

• Insurance!

In order to not go totally broke, your friend should get health insurance.

Thanks to Obama, you and your friend can be on your parents' insurance until you turn 26. Let's hope Obamacare never gets reversed and only improves. All full­time employers are required to provide health care coverage for their employees. Some cities require employers to grant paid sick days, and many companies have policies regarding personal and medical leave. If you’re one of your friend’s main people, consider taking time off to be there.

• Paying for all that other stuff

It’s not just your friend’s medical bills that will start to add up. You might find yourself paying for countless mini extravagances to make life easier, like taxis and cupcakes or a natural looking wig. Life is busy and short. We were lucky to have some disposable income at the time, and we know that’s not a position everyone is in, but if you can afford taxis and cupcakes, remember that money is (somewhat) replenishable, whereas your friend’s time isn’t.

If your friend has always wanted to take a sports car for a spin, eat ice cream for breakfast, or go ride an elephant in Bali, see if you can make it happen. Not everything’s possible of course, but you can try to be your friend’s own Make a Wish foundation, even if it’s just for small things. Take more walks in the park, go see movies, have long conversations about everything and nothing, try on ridiculous outfits, go trampolining. Throw her a surprise party, just because. Take a page from all beginner improv classes and learn to say yes to whatever she suggests (within reason, sort of).

Tell me more: Blue Monday Smoothies

• Can we apply for financial aid & assistance?

There are not­for­profits in the US that provide assistance for young people experiencing cancer and cancer survivors. You can offer to research them. Some hospital networks have labyrinthian systems for financial aid that are a nightmare to navigate. You can help your friend manage paperwork, and help her figure out if she qualifies for financial aid. You can also apply for grants and, if your friend is 100% okay with her experience becoming public, you can organize a crowdfunding campaign or a private fundraiser in your neighborhood, church, office or other community place.

It can be weird to ask for money. If your friend feels uncomfortable but still needs the funds, you can set up and manage a secret Paypal for the inner circle that keeps names and donations anonymous. You can give your friend visa gift cards or slip them envelopes of cash and say it just fell from the sky. They probably won’t believe you (cancer doesn’t affect your friend’s ability to detect lies) but they might also be very grateful.

Conversations and paperwork to think about

There are a lot of hard conversations to have during this time. What happens if things don’t get better is by far one of the hardest. It’s weird to talk about death, but it’s part of life and honestly, it can help everyone around feel comfortable knowing that decisions have been made. Your friend might want to discuss what they’d like at their funeral, which may be uncomfortable to discuss, but it’s important for your friend to know that you’ll honor these wishes. Here are a few documents your friend might want to consider filling out, and what questions to ask.

• What’s a health care proxy?

Your friend can designate someone to act as their health care proxy. This means they let someone else make decisions about their care if they aren’t able to —​if they are unconscious or otherwise unable to think clearly, the medial proxy can give the go ahead for certain procedures, based on your friend’s wishes. If your friend’s family is far away or can’t be involved for some reason, they can designate you or another friend to be their proxy. Becoming someone’s health care proxy is a very big deal, and it’s a legally binding document that entitles you to make decisions about your friend’s course of care.

• Living wills and advance care directives

You can help your friend research and draft a living will or an advance health care directive. If your friend can no longer communicate, these legal documents will specify the kind of care your
friend would like to receive. They can be very specific, or very general, and are often created alongside health care proxy forms.

It’s a good idea for everyone to have a living will, because it prevents family and friends from guessing preferences. It can mitigate a lot of pain, confusion, and financial burden for your friend’s loved ones. Some examples of all of these documents and questions to think about can be found here.

One side note — living wills have different legal import in different states. For instance, in New York, living wills aren't legally binding the way a properly executed health care proxy form is. But if the living will has "clear and convincing" (that's an actual standard) directives, then it can be used by healthcare providers as evidence of the patient's wishes, which good health care providers will take into consideration. In other words, double check to see which docs hold up in your state.

• What’s in a basic will?

You friend might consider creating a last will & testament. Your friend doesn't need a lawyer for this (as for all of the above documents) but it’s not a bad idea to have a lawyer look it over. Your friend can write a will that’s super short (give everything to charity) or incredibly long and detailed (give the owl piggy bank to my youngest cousin and my blue hat to my uncle’s pug). Assets includes stuff like clothes, furniture, art and, now, ‘digital assets’. It can also cover bank accounts and real estate, if your friend was a mogul.

A will is also where your friend might specify her memorial wishes —​burial in a favorite outfit, cremation with ashes scattered in a meaningful place, or even to become a diamond or an artificial reef to rebuild natural habitats for endangered corals and fish. There’s a surprising number of options out there!

• Should my friend get life insurance?

Life insurance is, well, insurance on your life. Your friend can take out a life insurance policy and designate a person to receive a payment when they die. It’s a little crazy, but there’s insurance for pretty much everything out there. Your friend’s employer might have a life insurance policy, and your friend can also look into getting one independently.

• Start a project with and for your friend

You might consider talking to your friend about what kind of legacy they want to leave behind. It could be a journal, a photo album, a project, or even an app. Legacy projects are an incredibly important tool for processing – your friend will feel useful and the project has the potential to bring up things you’re not talking about. It can be as minor as a hobby or as massive as a book. Projects are good.


Read on: After Cancer

Disclaimer

We’re not doctors, psychologists, or counselors. We’re not life-coaches, or your parents, or experts on cancer. We’re not here to tell you what to do, we’re just sharing what we went through, and what we think was helpful for Crystal and for us while dealing with cancer. Our hope is that what you read here helps you in some way, but remember to think for yourself and use your own judgment! And always, if you’re experiencing a medical emergency, don’t google it or rely on what we've said here, call 911.