Everything Changes - The Guide to Young Adult Cancer

One of the great things about being an author is all the emails I get from other aspiring writings who want to learn more about how to get published. They want to know about the craft of writing, the process of becoming an author, and how to succeed in the literary marketplace. When I began writing my book Everything Changes, I knew little about this field. Over the years, I schooled myself through trial and error, conducting tons of research about writing and publishing, and connecting with professionals in the field.

I’d like to pass along some of my knowledge to other writers who are interested in the subject of living young with cancer. I’m starting a new project called ‘Intern with An Author’ and I’m seeking my first set of interns now.

Interns will write blog posts, receive editorial feedback, and learn some of the ropes of the writing, publishing, and PR industry. I’m particularly interested in working with writers who have dealt with parenting and cancer, young adult caregiving, and thyroid cancer. But there’s room for other writers as well, even if you don’t fit into one of these categories.

For detailed information about the project, shoot me an email: kairolr at gmail dot com. Can’t wait to hear from you!

I get tons of emails from thyroid cancer (and other thyroid patients) wondering how to best handle starting new thyroid medication or changing doses of thyroid medication. These helpful hints are based on my own experiences as well as those of other thyroid cancer patients I met on the road while writing my book Everything Changes.

Remember, I’m not a doc and this is non-medical information. What worked for me also might not work for you. This isn’t a doctrine or manifesto. These are just some ideas for you to consider. They are presented in three sections:

1. Communicate with your doc about your levels
2. Get clear with yourself
3. Create a self-care plan

PART I: COMMUNICATE WITH YOUR DOC ABOUT YOUR LEVELS

1. Know what your doctor’s goals are.

Have a focused conversation with your doctor in which you understand what their ideal goals are for your TSH levels, why this is their target number, and what they base this decision upon.

Patients with different kinds of thyroid disease have different target goals for their hormone levels. Traditionally, thyroid cancer patients have been kept extremely hyperthyroid as a long-term treatment goal (in other words very low TSH). The thinking is that the lower the TSH, the less stimulation of thyroid activity, and hopefully the less opportunity for renegade cancerous thyroid tissue to grow. How hyper a patient should be might vary from doctor to doctor. Some endocrinologists on the forefront of thyroid cancer research are beginning to toy with the idea that maybe patients need to be kept hyperthyroid but not uncomfortably so.

Regardless of where your doctor’s approach falls on the spectrum of how low to go with your TSH, make sure you understand what their goal is so you are not banging your head against the wall with miscommunication about your lab numbers and symptoms.

2. Aim for a rational conversation with your doc about your symptoms.

Thyroid cancer patients are hands down the most emotional cancer patients I meet. Some of us are weepy, exhausted, amp-ed up, and anxious due to our hormone levels. These states of mind can make for doctor appointment train wrecks. Here’s a remedy:
When you are calm and focused type a list of your symptoms, followed by the questions: a.) Are these symptoms normal for someone with my TSH level? b.) Would changing my medication have any baring on the symptoms? c.) Would you recommend changing my med level - why or why not? Hand this symptoms and questions list to your doctor at the top of your appointment. Also, if you tend to get emotional when talking about your symptoms, consider having a friend accompany you and do the talking.

Here’s what not to do: Do not go into your endocrinology appointments weeping about your symptoms, asking your doc to take them away, or demanding your medication be changed.  I’ve learned that none of these methods work too well.

PART II: GET CLEAR WITH YOURSELF

3. Make peace with your situation.

Sometimes your doctor is not going to be able to adjust your meds in a way that will make you feel better. That sucks. It can be a very slow process accepting this reality. But once you accept the limitations of what your doctor can do, you can begin to explore practical ways in which you can help yourself. (Wow, that sounds so hokey, but hey – it’s true.)

I’m not saying love your disease, I’m not even telling you to be positive. I’m just saying be real about the fact that you have some symptoms that might have to accompany the medication you take and you might have to get crafty about how to manage them in your life.

4. Give yourself time.

Hormonal thyroid states can sometimes make life seem so extremely intense. You might feel that what you are experiencing now is going to last forever. And yes,  it may take a while for things to simmer down. So put a bracket, a set of parenthesis, around this time in your life. This is your time to adjust to your thyroid medication, to your new hormonal state of mind, to your disease. During this time you are going to have to find new ways to tame your mind, to preserve your energy, to think clearly, to have a somewhat normal feeling body. This will not happen in a week, it might not happen in a month, and it could take more than a year until you begin to feel like yourself. And you might not feel like your old self. You might feel like a different, new self.

PART III: CREATE A SELF-CARE PLAN

5. Identify your problems and brainstorm solutions.

Make a clear list about the things that are hard for you since you began your medication. When I began thyroid medication I felt extreme anxiety, brain fog and forgetfulness, and like my energy was crap. I wasn’t tired so much as wired. I had hair loss, hot flashes, and weight loss.

I have not erased the problems, but I have found ways to live my life comfortably despite these problems. I made the following changes over the course of months, some even years. They have made a huge difference in how I feel. They are night and day from how I used to live my life. I hope these ideas jumpstart you into thinking about crafty ways you can respond to your own symptoms. Remember this is trial and error.

1. Reduce your drama. I’ve ended energy sucking friendships. I limit my contact with friend and family who are a handful.

2. Trim down your calendar. I say ‘no’ more often than I say ‘yes’. I do ¼ the amount of socializing I used to.

3. Spend more alone time relaxing. I give my brain a rest by settling into long fiction books, zoning out on design blogs, and watching Law and Order.

4. Improve your mental self-esteem. My brain fog changed my identity. It made me feel stupid. It took a few years for me to turn this situation around. Read more about this in my New York Times post ‘When Cancer Muddles The Mind‘.

5. Declutter your physical space. If you have brain fog, come up with systems for streamlining and organizing your keys, you bag, your to-do lists, and for managing important information.

6. Sleep more restfully. My mind was going so fast I couldn’t get deep, restful sleep. There are tons of tricks out there for this. I eventually visited my general practitioner and got a prescription for xanax. While addictive for some, it has not been for me, and works like a charm.

7. Address anxiety. If you have anxiety, get real about taming it so it does not take control of your life. There are so many approaches for this including exercise, talk therapy, taking anti-anxiety medication.

8. Anticipate and respond to physical changes. Physical changes are so varied. Here’s how I’ve responded to some of mine:

I’ve sweat a lot more since starting thyroid medication. I now own cotton sweaters instead of wool, dress in layers, and do a ton more wash, which means I budget a lot more time to do laundry.

My hair has thinned. I’ve experimented with shampoos and haircuts. I’ve also started to wear more lipstick so if I’m feeling crappy about my hair when I look in the mirror, I see some other sparkle that makes me feel good about my appearance.

I’ve lost a ton of weight. I look scary skinny sometimes. I consciously try to eat more food, which sometimes helps and sometimes does not. I’ve started wearing more high heels because I figure if I’m doing to look like a waif I might as well try to look like a sexy one!

Please comment below to share your challenges and successes with adjusting to thyroid medications. I’d love to hear from you.  (I’m not big on promoting natural thyroid hormone - plenty of other sites for that - so please no comments on it here.)

For more tips on managing life with a chronic illness read my book ‘Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s’.

Everything Changes is throwing a 1-year-old birthday party for the Affordable Care Act. Don’t be embarrassed if you don’t know what’s in the bill - you’re not alone. Our big, broken health care system needed a fabulous new makeover; the changes are welcome, yet complex.

I’ve made a cliff notes version of the main parts of the bill that are already in effect and impact our freedom to access care. Please read, check back, and share the info with your friends and families so we can all better understand and celebrate our new healthcare freedoms and rights.

 FREEDOM TO ACCESS CARE!

Caps
No more caps. Insurers can’t set dollar limits on your lifetime benefits coverage, no exceptions. Annual benefits caps have been raised to $750,000 and will also be fully eliminated in 2014. Big Darn Deal = Cancer patients don’t have to worry about rationing their care for fear of being cut off.

Kiddos
Insurers are required to provide coverage to kids with pre-existing conditions. Applies to kids 19 and under. Big Darn Deal = Have you ever paid out of pocket for asthma treatment? Enough said.

Young’ins
Young adults can be covered under parental insurance plans until age 26, including married young adults, students, and non-students. Big Darn Deal = Most young adults are not slackers, we just can’t afford insurance while job searching and working entry level jobs with few benefits.

U-Turns
Before, if an insurance company got hit with a big claim, they could find an unintentional error on your application (even from years ago) and use it as a basis to make a big u-turn and deny you coverage. This u-turn is called a rescission and they can’t do it anymore. Big Darn Deal = Your mom is diagnosed with breast cancer and her insurance company can’t deny her coverage because she forgot to mention an ingrown toenail on her insurance application in 1999.

Pleas Please
You’ll now have the right to appeal decisions your insurance company makes about your health care (such as refusing coverage) to an independent, third party reviewer. Big Darn Deal = Insurance companies have to be accountable to someone besides themselves.

X-Change
What the hell are insurance exchanges? Think of exchanges as insurance shopping malls especially designed for individuals and small business that have a hard time finding insurance. The government is building the mall and will only let stores set up shop if they agree to treat individuals and small business shoppers fairly. Big Darn Deal = Insurance companies can’t rob blind a huge part of America’s workforce – individuals and small businesses.  Instead they’ll compete for our business with plans that are more affordable, and easier to understand and compare.

Do any of these changes impact you as a cancer patient or loved one?  How so? Share your thoughts and comments below.

Check back again for ongoing conversation about access to health insurance at everythingchangesbook.com.

The thought of carrying a child for nine months and having them pass through my crotch is about as appealing to me as having a recurrence of my cancer.  I’ve flat out never wanted to become pregnant or be a mom.

When I met my husband, I told him on date number two that I had cancer.  On date number three I told him I didn’t want to have kids.  I added the caveat that if I ever changed my mind, I’d want to adopt.  Agreed.   That was six years ago and we are still happily “childless by choice.”

But what choices would I have available to me if I do someday change my mind and as a cancer patient want to adopt or even foster a child?  Cancer conferences, organizations, or projects dealing with family planning dominate the issue with an often exclusive focus on fertility. Adoption is the bastard child of the cancer world. It drives me up the wall, and this is why Gina M. Shaw’s new book is a welcome addition to my cancer book library.

Gina is the author of the new book Having Children After Cancer (Ten-Speed Press). ‘Be My Baby’ is a forty-seven page chapter on cancer and adoption – one of the most in-depth sources I’ve read on the subject.  Like the rest of her book, it is laden with straight-up, indispensable information for both men and women facing cancer and planning a family.  A medical writer, breast cancer survivor, and mother of three kids (both adopted and biological), Gina’s book is not a cutesy bun-in-the-oven romp through baby land.  A writer after my own heart, Gina gives readers a serious education on the legal, financial, medical, and administrative side of family planning.    Having Children After Cancer enables survivors to read about adoption as a valid family planning choice along side fertility preservation, IVF, and surrogacy.    Whether you are recently diagnosed, a childhood cancer survivor, or just out of treatment, Having Children After Cancer is the family planning go-to book.

Have you thought about cancer and family planning?  What is the most challenging part about it?  If you’ve had a kid since your cancer diagnosis, share your story in the comment section so others can learn from your experience.

I had a marathon dream last night that involved about ten different settings, four different eras of my life, my ballet teacher, her diseased father’s used gun and ammo shop, costumes, a high school fling, joining a cult, eating crushed cookies packaged up into little paper tubes, fantastic DIY interior re-designs of homes from my childhood, my brother and sister-in-law, and a speech I made about why overweight men can be very attractive.

In the midst of this insanity, there was a little off shoot dream. I don’t remember the images or plot, just the basic message. This mini-dream was an update on my emotional status of coping with cancer. I got the news that I was moving along on my path of coping. Much of the grief and exhaustion of cancer was behind me now. I was largely free to move on with my life. I learned I had already started to live a post-cancer life months ago but hadn’t yet realized it.

In my dream there was no sense of relief or reflection; that would have been too much a part of recovering from cancer. Instead I was just on to the next thing. I didn’t know what that was. But I knew what it wasn’t. It wasn’t cancer.

In ten-years, this is the first time I’ve had a cancer dream that was not a stress dream. It’s pretty damn nice.

Do you dream about cancer? Have you ever had a good cancer dream?  How do you think  you’ll know if or when cancer starts to take a back seat to the rest of your life?

For more tales about coping with life during and after cancer cancer, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

The first step to reducing your medical debt is asking your doc or hospital to reduce your bill. This takes time, chutzpah, and smarts and is worth the work.

Asking for a discounted bill can sound impossible but it’s not.  Here’s why:  The cost of medical procedures, doctor’s time, and hospital services are not set in stone. In fact, different patients are even billed different prices for the same services. Walking into a doc’s office or hospital is not like walking into McDonald’s where a Big Mac costs the same for everyone in line.  With medical care, different people get charged different rates and your rates can be negotiated.  After all, negotiating rates is exactly what insurance companies do and you can do it for yourself too!

The National Endowment for Financial Education has a great brochure ‘Avoiding and Managing Medical Debt’.  These tips on how to ask for a reduced medical bill  are based on their expert advice:

1.  Have a positive attitude. Your odds are good: 50% of people who ask for reduced costs get them, plus using these strategies give you an extra advantage.

2.  Talk to the right person, face-to-face: Don’t do it by phone or letter. Talk in-person to your doc, your doc’s or hospital’s office, business, or billing manager.

3. Honey goes farther than vinegar. Be polite. Kill’em with kindness.

4.  Be persistent. Don’t take no for an answer.  (I never do!) Many hospital staff don’t know the correct policies and will say ‘no’ when they should say ‘yes’.  Work your way up the ladder.

5.  Build your argument. Find a copy of the hospital’s free and discounted care policy.

The American Hospital Association has a Billing and Collections Practices Policy.  4,200 hospitals have signed on agreeing to: a.) assist patients who can’t pay for all or part of their care, b.) make these policies accessible and written in clear language. Visit this link, click on ‘more than 4,200′. If your hospital is on the list, present this info in defense of your request.

6.  Contact your State Attorney General. If you’re at a non-profit hospital, many state AG’s will help ensure they provide charity care.  Find your State AG here.

7.  Compare costs. Conduct research to find out what patients with insurance or Medicare are paying for your same procedure codes. Demand the same rate.

8. Offer to pay part upfront.  Billing departments need cash from patients who often can’t paying anything at all.  Bargain for a discount in exchange for paying something upfront.  Will they cut in half a $15,000 bill if you give them $800 upfront?  Maybe.

9.  Get it in writing. When they agree to your request, get it in writing!

Does haggling for reduced costs excite or intimidate you?  Have you ever done it?

For grants, financial assistance, and money saving tips download for free the first chapter of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Scroll down on the right side of this page for the yellow highlighted download link.

I cannot get rid of my cancer. But lately I’ve wanted to get rid of things that remind me of my cancer.

Prior to my diagnosis, I felt like everyday objects could hold power. A glittery ribbon on a package sent by my best friend had the ability to make me feel more powerful in the world. Coveting the ribbon, I’d set it on top of my dresser and look at it daily. But I’m not that gal anymore.  Cancer has obliterated a lot of my desire and ability to feel things on a deeper level. I’ve got enough sensations and emotions flying around in my head thanks to medically induced hyperthyroidism. In response to this overload,  I want to scale down keeping things simple.  I don’t have the energy to feel so attached to objects and sentiments.  The ribbon is now a ribbon - not a reminder. And it’s no longer on my dresser.

It’s getting colder outside. I’ve switched my summer jammies out for my winter PJ’s. I have six Calvin Klein PJ pants I bought nine years ago at Marshall’s after I was diagnosed. They were not retail therapy purchases, but rather my new uniform. I’ve racked up thousands of hours in bed and on my couch in these clothes. The fabric is thinning. The legs have grown. I’m a total miser and know I could get another season out of them. But do I want to go to bed every night wearing my thyroid cancer uniform?

These pants are just pants. They don’t hold any power or negative energy. But they did come from a time in my life I don’t want to remember so much anymore. It would be better for the environment if I got a tenth and last season out of them. But I think it would be better for me if I didn’t. I’m heading to Marshall’s tomorrow for new PJs. While I’d like this to be a casual shopping trip, there might be some ceremonial undertones and maybe a lump in my throat. That is, a lump in addition to the two tumors nesting in my neck.

Do certain objects remind you of cancer? Do you covet them or want to trash them?

Read more about coping with the before’s and after’s of life with cancer. Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

1. What’s the difference between government provided care vs government regulated insurance companies?

In my last post, a survivor named Amy commented on her concerns with government run health care. Her comment made me realize just how confusing the difference is between government run health care vs. government regulated health insurance.

* Government Regulated Insurance: The new reforms that were put into place on Sept 23 help regulate private health insurance companies. They are laws that regulate private insurance agencies so that consumers (patients) get more protection from private insurance companies. There are a lot more of these changes coming between now and 2014, including the ever anticipated elimination of pre-existing conditions. So no, the new changes I wrote about last week do not mean the government provides your cancer care, but they are starting to regulate private health insurance companies, a change which is long overdue.

* Government Run Health Care: You are only getting government run health care in the United States if you are: Receiving care at a public hospital (such as a county hospital) or public health clinic, going to Indian Health Services, in the VA or military system. And if you are on Medicare or Medicaid, it is not government run care but government run insurance.

2. Here’s An Easy-to-Understand Cancer Patient Example

The government is now regulating health insurance companies, the same way that the FAA (Federal Aviation Administration) makes sure planes are safe and don’t blow up. The same way that OSHA (Occupational Safety and Health Administration) makes sure that employees have properly ventilated workplaces.

So let me give an of how HHS (Health and Human Services) is regulating private health insurance and how that’s different from a country like Canada where facilities and doctors actually work for the government. Let’s use Gerber baby food as an analogy:

The FDA (Food and Drug Administration) has regulations protecting the public to make sure baby food doesn’t contain shards of glass or cockroaches. When you’re pushing a cart down the aisle at Safeway or Wal-Mart you are shopping at a private store and buying Gerber strained peaches, which are made by a private company. However, you’re buying a product you know is safe because Gerber had to comply with government regulations to make sure their baby food isn’t contaminated with glass or roaches.

Let’s say now you’re a cancer patient going to MD Anderson and have Aetna HMO insurance. With the new government health insurance regulations, MD Anderson is still a private hospital and is not a government run hospital - just like Wal-Mart is a private store. Aetna is still a private insurance company – just like Gerber baby food is a private company. But Aetna’s products, such as your HMO coverage, are government regulated to make sure you the consumer are protected and they cannot drop you because you have cancer. This just like the strained peaches that are regulated by the FDA so they don’t have glass or roaches in them. So no - we have not become Canada; our health care system is still privately owned and run.

3. Making Sure My Friends and I Don’t Die From Cancer

Consumer safety regulations cost companies more money. Sure Gerber would make a higher profit if they didn’t have to hire safety inspectors, or if they could store their peaches on the floor in open bags instead of off the floor in approved containers. But then the public would have glass and roaches in our infants’ peaches and peas.

Up until the new healthcare reform act, insurance companies could do whatever they wanted to drop patients and dismiss claims so they could make gargantuan profits. The new regulations will cut into their profits. However, when you look at the amount of money insurance companies make, they certainly can afford to make a little less and still be profitable companies. Maybe their CEO’s will have one jet plane instead of five. Maybe their CEOs will get 20 million dollars in bonuses instead of 65 million dollars in bonuses. But the American public will be safer and have their health better protected.

I don’t think that all industries need to be regulated by the government. But I do think industries that impact the health and safety of American citizens should be regulated. I’m glad that Obama and the Democrats have made sure health insurance is one more industry that is regulated to protect us. Making sure my friends and I don’t die from cancer is a pretty big deal and one that I’m glad my government now cares about. If you care too, please vote for your democratic candidates on November 2, 2010. Because remember, every single Republican in Congress voted against these reforms.

Learn who your candidates are here. Enter your zip code to find local candidates. Vote for them and volunteer for their campaigns.

It’s super important that we understand the new health care changes that went into effect on September 23, 2010. Why? Because they’re now your legal rights. If an insurance company is not complying with these regulations, you can and should hold them accountable so you get the maximum protection and coverage guaranteed to you by law.

I love the Campaign for Better Health Care and have used their guide adapting it slightly for young adults and cancer patients. If you have additional questions, ask in the comment section below and I’ll bring an expert on board to make sure we get them answered.

Lastly, please forward, tweet, and re-post this Everything Changes blog post widely. (Here’s a link you can just cut and paste http://ow.ly/2M6GR) Lots of people are understandably confused and I want to make sure that all patients get the maximum coverage we are guaranteed. After all this increased access to care can save patients money and even save lives.

Read on!
Kairol Rosenthal

*  *  *

Below are changes that apply to plans beginning or renewed after September 23, 2010. For many people this means the provisions actually take effect when they renew their plans in early 2011.

1.  COVERAGE FOR YOUNG ADULTS
If you’re a YA without health insurance, you can be covered under your parent’s insurance plan up until your 26th birthday. This includes YAs who are married and YAs who aren’t students.

FYI: Young adults that already have a health insurance offer through an employer may not be eligible.

2.  FREE PREVENTIVE CARE
Your insurance plan must cover preventive services and screenings, without co-pays or deductibles. Here are just a few of the preventive services and screenings on the list that I thought pertained to young adults and cancer patients. You can view the full list too.

- Depression screening
- BRCA counseling about genetic testing for women at higher risk
- Breast Cancer Chemoprevention counseling for high risk women
- Cervical Cancer screening for sexually active women
- Sexually Transmitted Infection prevention counseling
- STI screenings for syphilis, Chlamydia, Gonorrhea
- Immunizations for adults – including HPV, influenza, and pneumonia
- For pregnant women:  folic acid supplements, breast feeding support, screening for hepatitis b and anemia plus much more – see the list
- Alcohol misuse screening and counseling
- Obesity screening and counseling for all adults
- Tobacco Use screening and cessation interventions for tobacco users
- Diet counseling for adults at higher risk for chronic disease

FYI: Colorectal screenings were for age 50 and over; mammograms for age 40 and over. However, I suggest you challenge your insurance company to cover these if you are younger and medically in need of these tests. (See below for your right to appeal insurance company decisions.)

“Grandfathered” plans don’t have to comply with this rule. To learn more about what a grandfathered plan is visit FamiliesUSA and read the 4th item under ‘Big Picture’.

3.  NO MORE LIFETIME CAPS
Insurers are now not allowed to set limits on your lifetime benefits coverage, no exceptions. This means you will no longer have to worry about “capping out” on your coverage.

FYI: While there are no more lifetime limit caps, there are still annual benefits caps that have been raised to $750,000. These will be fully eliminated in 2014.

4.  NO MORE RESCISSIONS
Insurance companies are no longer able to cancel your coverage for unjust reasons, a practice known as rescission. Before, if an insurance company got hit with a big claim, they could find an unintentional error on your application (even from years ago) and use it as a basis to deny you coverage; not anymore. This this this applies to all insurance plans.

FYI: If you intentionally commit fraud or hide something on your application, your insurance company can still rescind your coverage.

Your insurance company must give you 30 days notice if they intend to rescind your coverage, in order to give you time to appeal.

5.  RIGHT TO APPEAL INSURANCE COMPANY DECISIONS
You’ll now have the right to appeal decisions your insurance company makes about your health care (such as refusing coverage) to an independent, third party reviewer. How this appeals process actually works will vary by state and by plan.

FYI: This doesn’t apply to grandfathered plans.

6.  NO MORE DENYING KIDS WITH PRE-EXISTING CONDITIONS
This applies for children up to age 19. So if you’ve got kids, read this one carefully. Insurers are required to provide coverage to children with pre-existing conditions, such as asthma or hemophilia. This applies to families with group plans and non-grandfathered individual plans.

FYI: Grandfathered individual plans do not have to comply with this provision (though group plans DO), and some insurance companies will no longer offer child-only policies.

These new changes are an incredible step in the right direction for our country. They will help me and many, many people I know. But they will not cover everyone yet, and some patients will still need extra financial support. Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for financial assistance resources for cancer patients.

I first posted this piece last summer, but knew I had to revive it when I got a great request from ChronicBabe for posts on the theme of chronic illness and humor:

Last week, I was interviewed in a Newsweek article about young adult cancer humor. I’m, not a very funny person. I’m just not. Don’t worry, I’m not being harsh on myself. I think I’m smart, compassionate, and fairly attractive. But, I’m just not very funny.

I love to laugh, but my humor is particular, maybe even stubborn. I can’t rent dvds from the comedy section; I just don’t find them funny. Nor do I find cancer jokes very funny. So, it was really hard when Newsweek asked me to contribute some jokes to the blog that accompanied the article. Here’s what I sent:

*What do you call a young adult cancer patient with health insurance? A Canadian.


*Why did the cancer patient cross the road? He wanted to get hit by a truck.

These jokes are the best I could do.

I’m not above cancer humor, and I’m not particularly politically correct. I just have a hard time laughing at something that has killed a lot of people I love, and caused me and my family enormous pain and distress. I have plenty of laughter in my life. But I don’t want or need it to come from my illness.

Jill Harrison, a young survivor in the article said she feels humor can be a cover up for issues we have a hard time talking about. I agree.  (Though I see exceptions, like Heidi Adams who is both a total jokester and very real about hardcore cancer issues.)

I find it strange that cancer is something people often relate to through humor. Why is that?  I never hear people cracking jokes when someone says their dad died of a brain anurism, or that their apartment was charred in a fire. Yet humor seems almost like a branded expectation put on oncology patients.

I feel like the cancer community often dumbs me down, like I need a little slap stick song and dance routine to make it through. And as a result, I see very little time devoted to the the hardest conversations of it all. Did you know that almost 1 in 4 young adult cancer patients won’t make it? How many resources are there talking about end-of-life care for young adults? Almost zilch. And that’s not funny.

When we start actually addressing the really, really hard side of cancer, maybe then I can start laughing about the rest of it. But probably not. I think cancer might always be serious to me. Instead, I’ll spend my time laughing at Cake Wrecks. Yeah, I do find some things funny. Just not cancer.

What is your take? Do you laugh at your illness? Is it ever nervous laughter or good medicine? If you have a disease other than illness, do you find that humor and light-heartedeness is used in your patient community?

Check out my book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s.  I didn’t think it was a funny book, but readers have told me it caused the kind of laughter that makes beverages squirt out your nose.