October 09, 2008

Middle of The Night Beast

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?

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October 08, 2008

Excuse Me, Where Was I?

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?

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October 07, 2008

Blue Light Special

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?

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October 06, 2008

Red Scare

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?

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October 03, 2008

Cleaning For Reason

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.

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

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.

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October 01, 2008

80 Million Bags of Pink M&M’s

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.  

When you place pressure on your local representatives by calling, visiting, or writing letters, in the end you will raise more money for breast cancer than if you bought a bag of pink M&Ms.  So  let’s reveal some math that helps make sense of this all: 
  • Americans would need to buy 80 million bags of M&M’s to equal the $40 million sum that is offered in this bill.  (I’d rather my hard earned tax dollars go to support cancer research, and save my spending money on something other than pink candy.  I’m sure my dentist concurs.)
  • M&M’s pledged to donate $1 million dollars to the Breast Cancer Research Foundation.  With a 50 cent donation per bag,  it takes 2 million bags of M&M’s sold to reach the $1 million goal.  In most cause related marketing campaigns any sum over the 2 million bags would go straight into the pockets of the M&M company and not to breast cancer research.
  • While $1 million sounds quite generous, the Mars Company that manufactures M&M’s earned $21 billion in sales in 2006.  In fact, they are also giving away $1 million this month in a Halloween haunted house sweepstakes.
As a cancer patient, I’d rather raise cancer research funds as a pro-active, vocal citizen, than as an undereducated consumer being duped by slick cause related marketing.
What about you? Have you ever called your representatives about cancer legislation?
Would you contact them  if you knew how or where to make the calls?

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September 27, 2008

Secret List Serve

It was a mistake. I have no idea how I got on a small, private list serve for hospital administrators who focus on patient relations. From what I can tell, they are the customer service folks at a hospital. Their job focuses on patient safety, satisfaction, and how to makes sure we don’t sue their asses when the hospital or its employees screw up. I find their emails extremely entertaining. In fact, I’m somewhat hesitant to even blog about it, because if they find out I’m an accidental spy, I know they’ll kick me off the list.

The most recent exchange was about ‘service recovery’. When a hospital loses your films, or double books an appointment and sends you home when you took a day off of work and drove 2 hours to get there, or forgot to check the correct box on your blood test slip, how do they say “We are sorry?” Through service recovery. They want to makes sure you 1. Don’t report them, and 2. They don’t lose you as a customer.

One member shared a document about the program at his hospital. This is the description of the program that they hand out to hospital employees. (I’ve cleverly changed the name.)

“The XYZ Program, a very effective customer service recovery tool, has been in place since 2000. The program empowers employees to better serve an unhappy patient or customer. XYZ interventions must be done with forethought and judgment…we trust our staff to use it with care. XYZ gifts are not intended to gloss over problems, but rather to take ownership for them and initiate remedial action. This effort is directed at making the customer feel better about the organization.”

Okay, so I want to know what this big gift is that initiates remedial action. It must be pretty special, not only because we are talking about remediation potentially life threatening mistakes, but because they are warning their staff to use a lot of forethought and judgment. Do they credit your bill? Promise you Lyonnaise salads and chocolate Eclairs during your next hospital stay? Give you a pass to the penthouse hospital room? Close: they give you a bouquet from the hospital gift shop or a friggin cheese basket. I’m sorry but if my hospital misplaces my records and then adds insult to injury by serving me up either a hunk of Jarlsberg or a vase of carnations and baby’s breath, you better believe I’m reporting their ass to the Joint Commission.

Stay tuned for my posting later this week when I define true remediation and serious butt kicking actions you can take against your hospital, before or after they placate you with cheese.

Until then, have any of you receive floral, culinary, or other pacifiers from your hospital after they have screwed up?

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September 27, 2008

Cabin Fever Reliever #2: Blogging Cancer Style

Homeopathic remedies. The theory is that an intensified dose of whatever is ailing you will rally your body to fight against it. So, if the walls are closing in on you with cancer cabin fever, one way of fighting it is to dive even deeper into your own little secluded existence. And what better, more addictive method of hibernating in your cancer microcosm than starting a blog? Check out these three cancer friendly ways to start blogging.

Mylifeline.org was started by young adult cancer patient Marcia Donziger. This free service allows cancer patients to start their own personal websites. In addition to blogging about your experiences, you can also create links to information about your cancer type so friends and family can easily educate themselves, setup a calendar so people can sign up to help you with your nuts and bolts needs, and link to inspirational and humorous messages.

Carepages.org provides a similar free service where patients can set up their own web pages. However, care pages has more of a social networking component to it, with articles, message boards, blogs, and best of all a gift registry linked to cancer books and other items on Amazon. Yes it’s rude to include a gift registry with your bridal shower invite, but what about with your cancer blog? I’ll let you be the judge.

Myplanet.planetcancer.org is an incredible social networking site for twenty and thirty-something cancer patients. It is free, allows you to post photos, start a blog, join groups, and comment in forums. My Life Line and Care Pages encourage friends and family to read your blog or web page, while planet cancer is for members only, encouraging a readership of almost exclusively young adult cancer patients.

Have you ever blogged about your cancer on one of these sites, Blogger, or some other blog platform? How does blogging change your cancer experience?

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September 27, 2008

Screw the Bedazzler

What else sucks about young adult cancer besides puking, wrestling with death, and feeling like you may have no future? Carrying around in your purse a plastic day-of-the-week med reminder box that reeks of the nursing home life.

For years I have placed on my to-do list the Martha Stewart-esque craft project of attacking my geriatric Walgreen’s pillbox with a bedazzler in an effort to sparkle up the fact that I take pills three times a day. Alas, I’d don’t have one iota of Martha in me. Frankly, I’m just too lazy. I have resigned myself to carrying clunky plastic pill boxes in my purse, and screw it if I look like I just walked off the set of the Golden Girls. Until now. Check out the great pill boxes I just stumbled upon.

Martinis, Golf Clubs, and Dragonflies, Oh my!
Design your own metal case that holds a seven day pill box. Choose from 21 cool designs and iridescent colors, many of which are gender neutral. From kyledesigns.com.

Rosie the Riveter
If you only need to carry a few pills with you at a time and don’t need to organize them by days of the week, nothing will make you feel like you are kicking cancer’s ass quite like Rosie. Of course it is on Etsy. Where else?

Are you taking pills or are you on the pill?
The Med Sun Seven is a great little compact that unfolds into a seven day pill box. If you’ve ever schleped around birth control pills, you surely can do this one too. It’s available on Amazon and other med reminder sites.

Have you ever felt like a Golden Girl (or guy) from carrying geriatric pill boxes?
Do you have additional sources for cool pill boxes? (Especially jumbo sizes for those of us who have to toss back multiple pills large enough for a barnyard animal.)

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September 26, 2008

Tying The Cancer Knot

Dreams come true. Miracles can happen. There are actually men in the world who despite fear of recurrence, the wicked side effects of hormone therapy, and the sight of scars and blood, fall in love and marry women with cancer. The above pic is me and my husband Shannon on our wedding day. Dreams come true. Miracles can happen. There was actually a man in the world who could not only handle my cancer, but also loved abandoned houses and factories as much as me and was willing to schlep his whole family and all of his friends to the mecca of dilapidation for a wedding in my hometown of Pittsburgh.

Another wedding is brewing for Craig Stuart and Deborah Singer, a breast cancer survivor. Because of her mounting medical bills, they are having trouble coming up with enough money to afford a wedding on their own. It seems that a government bailout is unlikely, so they need our help. Craig and Deborah are one of four finalists to win a “dream wedding” in Charleston, South Carolina. Check out their story and vote for them once a day until October 17th. The video is a bit cheesy ala Oxygen Network, but their love just pours off the screen and it is SO obvious they should be crowned the winners. Mazel Tov!

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