Everything Changes - The Guide to Young Adult Cancer

You know the shpeil. Young adult cancer patients have stagnant survival rates, we are the largest group of uninsured adults in America, we have zilch in the way of clinical trials targeted to our specific disease types and biological needs, and most doctors and social workers have no clue what to do with us.

Sucks huh? Well lucky for us Dr. Leonard Sender a.k.a. Lenny is doing something about it. In his spare time (he serves as the Medical Director of Clinical Oncology Services at the UC Irvine Medical Center’s Chao Family Comprehensive Cancer Center) he founded the SeventyK campaign to raise awareness to the lack of rights that young adult patients have in the organized medical world.

Listen to Lenny: “There is a Patients’ Bill of Rights in every hospital that is given to all patients when they are admitted. However, when you review the Bill of Rights of most institutions in the country, you will find that the Bill of Rights does not reflect the needs of this adolescent and young adult patient population specifically.”

Tired of signing online petitions? Well this one really matters, especially if you are one of the 70,000 young adults diagnosed with cancer each year – or if you know or love one of us. Click here to read more about and sign the SeventyK Patient Bill of Rights.

Have you ever seen the Patient Bill of Rights at your hospital? What did it contain?

“My body feels like a defective unit on the assembly line,” said Wafa’a Badriyeh, a 24 year old lymphoma patient who I interviewed in my book Everything Changes. I concur. Oddly enough, one of my best remedies for feeling subhuman is to focus on bodies that are superhuman. Time flies when I dive into the body-mind escape of becoming one with dance videos on you tube. If you have wi-fi in the hospital or at chemo, remember to bookmark these!

16 b-boys from 5 continents come to Berlin to battle to the max in the Red Bull Breakdance Competition.

Forget Sex and the City Baryshinikov, this one is far more stunning. The opening scene from White Nights: love, waiting, loneliness, fear, death - what says cancer better than that?

You get a prize if you can name who sang the original version of this song in La la la Human Steps’ Amelia. Music, cinematography, and dancing are all exquisite.

Which is your favorite?
Do you have any other great body-mind escape videos to add to my list?
Also be sure to check out more of my time flies tips.

Like Barney Rubble running motionless in a foot powered car, cancer what ifs have plagued my thinking but gotten me nowhere. What if I apply to school and my cancer comes back? What if I plan a vacation and cannot take it?

Last summer I was chosen for a choreographic residency that culminated in a performance of a new work. What if I accept this? Start working? Hire dancers? And my cancer comes back. My tumor marker was on the rise with surgery and treatment looming. But the what ifs had clogged my mind and stifled my decision making for years. I wanted to change the pattern; I just went for it and began a ballet-opera inspired by Pink Floyd, regardless of the outcome.

Yes. The shit hit the fan. My cancer came back and I need surgery. But, I had worked hard and my ducks were in a row. I completed the residency and cranked out a good performance in the midst of my recurrence, surgery, and recovery. I’m no superwoman; I can also imagine my alternate world where cancer hijacked my goals. In that world I would have sobbed in bed on the night of the performance, and dealt with the emotional and financial loss and frustration.

As a cancer patient, it makes perfect sense to fear what may happen to my body in the future, but from this incident I learned how to disconnect those feelings from the actions that carry me forward in living my life. Now, my body and my calendar are two separate, disconnected entities. I forge ahead and the what ifs no longer trail me. Ultimately, I have learned that maybe instead of asking with anxiety what if I do this, I should be asking what if I don’t do it?

I also have learned to take precautions along the way; I plan ahead more than I used to, more than I would like to. With the upcoming publication of my book, I try to complete my work far ahead of deadlines in case my medical world interrupts.

Have cancer what ifs ever paralyzed you or kept you from doing something you really wanted to do? Have you found any solutions?

I was at the doctor’s office today, and when I walked past the hospital gift shop it made me wonder, What was the best cancer gift I received? A clear rubber ball that my friend Mary Lois gave me the day before my first surgery when I lived in San Francisco. I guess super balls are not a good gift good gift for a testicular cancer patient, but I’m a girl so it was all good.

When we were kids, my brother and I had a huge glass jar of superballs, each the size of a quarter. Some were swirly, others had glitter inside. When my parents were out of the house we used to stand at the top of the stairs and ricochet them hard off the walls like a pinball machine, down the stairs into the living room. I’m amazed we never broke anything.

The superball Mary Lois gave me was clear, the size of a plum, and had a toy lion suspended inside. In the middle of the night, the evening after my surgery, when even the nurses had stopped poking me and my mom was crashed out on the chair next to my bed, I spent three hours staring at the clock and rolling this little ball around in my sweaty palms. I was doped up on anesthesia and thought, ‘If I can roll this little lion around in my hands, then I know I’m alive and I will make it through the night.’ As corny as it sounds, it felt like that super ball was keeping me from dying.

Mary Lois must have picked it up at the corner store on the way to the hospital or maybe she even found it on the floor of her car. It seemed like an afterthought gift. Yet, to this day it is blows away the junk sold in any hospital gift shop.

What kinds of cancer gifts have you ever given or received?

I’m such a geek I google things like cancer and ADA just for fun. This may have been major news, but if it was, I certainly missed it. In the midst of the pandemonium over Palin, and the word on Wall Street, the president signed an amendment to the Americans With Disabilities Act, on September 25. I think these additions could be very beneficial for young adult cancer patients in the workplace.

The ADA has specific guidelines that define disability. If you fall within the definition, and work for a company with 15 or more employees, you can be protected under the ADA from employer discrimination. Plus, the ADA provides that employers must make reasonable accommodations for your disability: i.e. moving your office closer to the bathroom or shifting your work schedule to allow for doctor appointments. These are the changes I think will be most beneficial for cancer patients:

1. The amendment expands the definition of “major life activities” by including two non-exhaustive lists:
a. A list of more obvious activities, like walking, now also includes activities such as reading, bending, communicating, concentrating.
b. A second list includes major bodily functions e.g., “functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions”

2. It also clarifies that an impairment that is episodic or in REMISSION IS A DISABILITY if it would substantially limit a major life activity when active.

3. It emphasizes that the definition of “disability” should be interpreted broadly.

I do not understand what possessed George W. Bush to sign this amendment that hugely supports patient rights (sometimes at the expense of employers) but thank you for doing something right in your eight year tenure!

What kind of workplace accommodations have you needed since your cancer diagnosis?
Have you ever been discriminated against in the workplace because of your cancer?

Breast cancer is not the most common kind of cancer or the largest killer of women. It only seems that way because we are drowning in the pink froth and foam of October. Five times as many people are diagnosed with skin cancer as are with breast cancer; twice as many are diagnosed with lung cancer as with breast cancer; and more people die of colorectal cancer than of breast cancer. So why has the pink ribbon become the cause celeb?

Companies gravitate to pink because it makes them see green: cash. Like a two-for-one sale, or a blue light special, pink ribbons are a marketing tactic that naïve consumers fall for. Plain and simple, cause related marketing leads to higher sales for companies. (If companies were truly concerned about giving to cancer they could engage in quiet philanthropy, just as we consumers are able to donate to good organizations by writing checks instead of buying pink M&Ms.)

So why do companies promote breast cancer marketing instead of skin or lung cancer marketing? Easy, women are more gullible when it comes to buying crap we don’t really need in the name of a good cause. A study on cause related marketing showed that women are more likely than men to purchase products from companies that support charitable causes. Were it the other way around, you can bet that we’d all know that June is Male Cancer Awareness Month. (FYI - The folks up top are demonstrating on a sidewalk in London the male deaths from prostate cancer.)

Do you like buying pink ribbon gear? If so, let us know why?
Do you ever write checks for charitable cancer causes without getting anything in exchange?

The Story

Visiting my family in Pittsburgh for Rosh Hashanah, I played hooky from synagogue, choosing instead to sleep in and eat brunch at Pamela’s Diner with my 88 year old grandma. In the car, after feasting on pancakes, eggs, and hash browns, I was overcome by a prickly sensation on my face. “Grammy, does my face look funny?” “Honey, you’re turning bright red,” she said. We pulled into her garage and sped upstairs so fast she forgot her cane in the car. In her apartment, I stripped down to my underwear. My whole body was on fire.

In 1978 my grandparents moved into this apartment and in true Mrs. Roper style, Grammy redecorated with metallic wallpaper and floor to ceiling mirrors. Standing on sea foam green carpet in front of a 9×14 foot dinning room mirror, we watched every inch of my body turn lobster red.

We called Pamela’s for the 411 on the food– no funky ingredients, stuff I eat everyday. I dialed the 24 hour on-call nurse at my insurance company. She read a list of computer prompted questions while Grammy patted my legs and yelled into the receiver, “She’s burning up! She’s red all over!”

I take super high doses of thyroid medication to curb my tumor growth. These meds make my hair fall out. Instructed by a registered oncology dietician, I take biotin to volumize my hair, and a B complex to partner the biotin. The insurance nurse on the phone narrowed down my symptoms to a niacin reaction. Niacin is a B vitamin that can cause blood vessels to dilate resulting in rashes, dizziness, redness, itching, and prickling.

After 45 minutes I returned to my usual pale white. I never hear my grandmother swear. It is not that she doesn’t have strong opinions, but an oy vey will usually suffice. As she handed me her housecoat she said, “Kairol, you sure scared the shit out of me.”

The Moral

After we’ve poisoned our bodies with cancer drugs like radioactive iodine 131 or the red devil, vitamin and vegetable regimens seem harmless. Last year I tried a raw food diet that gave me intestinal bleeding. A high dose vitamin A regimen I was on posed the threat of liver toxicity. When you take vitamins and herbs:
1. Ask your doctor first.
2. Read and follow the directions on the bottles.
3. Study up on contraindications.
4. Start regimens slowly giving your body time to adapt.

Have you ever experienced side effects from seemingly innocuous vitamin or diet regimens?

I was no clean freak before cancer. But when you rack up 70 plus hours a week on the couch, you begin to notice every dust bunny. I daydreamed about a cancer housecleaning organization, and I just found out my dream has come true.

Cleaning for a Reason is a foundation that offers free housecleaning services to cancer patients. They match you up with cleaning services in your area who volunteer their time whipping your cancer shack into shape. They provide a general cleaning once a month, for four months during treatment. Visit their website to see if they offer services in your area and fill out the patient information form and waiver, which requires written proof from a doctor.

Pros:
They friggin clean your house for free. Few things get better than that.

Cons:
This service is only available to female cancer patients. What about single men who have cancer? What about married or coupled men with cancer whose partners are full-time caregiving on top of working a 40 hour a week jobs and raising kids? They need the power of clean too. I called the organization and pressed them for an explanation. “When the woman is down, the house falls apart,” they said. Okay, the organization is run by some ladies from Dallas who seem a bit stuck in the 1950’s.

My Solution:
If you are a guy, just fill out the form and dress in drag when they arrive.

Have any of you become neat freaks or more conscious of the cleanliness of your pad since you were diagnosed?

P.S. - Believe it or not, the woman in this photo from a Scrubbing Bubbles Dual Shower Cleaner ad is in fact Chris Blumer, the guest blogger who wrote Chemo 101 for Newbies.

Last week, while Republicans and Democrats wrestled over bailouts, there was one thing they did agree upon. Like a page straight out of the The Official Preppy Handbook, pink finally met green with a voice vote in the House approving legislation H.R. 1157, which requires the National Institutes of Health to grant $40 million over the next four years to researching environmental factors that might be related to breast cancer.

As a kick off to breast cancer awareness month, let’s take this recent legislative success as an excellent lesson on how opening your mouth, instead of your wallet, can make a world of difference.  This piece of legislation had overwhelming support in the house (287 votes).  Why?  It is not just because our elected officials care about breast cancer; it is also because they know that you care and that you will continue to elect them if they vote correctly on these issues.