Everything Changes - The Guide to Young Adult Cancer

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?

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?

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.)

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!

Shocking. While writing my book, I encountered many professionals who deal with pain, healing, and cancer and were often stunned and stumped by my questions about 20 and 30-something patients. There was a total disconnect that our bodies could be so fallible. That yes, we can and do end up as their patients too.

Not so with Dr. Diane Meier. She is a palliative care physician who I connected with and interviewed for my book Everything Changes: The Insider’s Guide To Cancer in Your 20’s and 30’s. I’m excited to share on the page with readers her practical knowledge that debunks the myths of pain relief methods and medications.

I was thrilled to learn this week that Dr. Meier became a recipient of a MacArthur Fellow award. Congrats! Check out this clip of video to learn more about her work.

Visit the MacArthur Foundation to see videos about other inspirational scientists, artists, anthropologists, musicians, and more who are changing the world.

I’m curious, if you could nominate someone as a MacArthur Fellow, who would it be?

Are the walls closing in on you like Luke, Hans, Princess Leia, and Chewie in the garbage compactor? Does chemo fatigue have you chained to the couch or locked in your house for days on end? I know first hand what it is like to spend weeks and months living like the boy in the bubble. My remedy: rearranging the furniture (come on guys - not like that!)

My budget was non-existent, my energy for large projects nil, but I became so pleasantly distracted (okay obsessed) with rearranging my apartment that I succeeded in getting my dresser and the arrangement of tshatshkes on top into a juried art exhibition. Never before had I cared so much about brightening up my surroundings and whipping into shape the décor of my apartment. Could I find nobler ways to help humanity than switching the location of my desk three times? Of course, but screw it, this is cancer and I needed some good distraction.

If you are looking for cheap solutions for harmonizing your space and whiling away the twenty and thirty-something cancer hours, check out these resources. Watch out, they are addictive.

Apartment Therapy is the converse of the pre-fabbed, overly produced DIY projects you see on HGTV. This website features guerilla DIY home solutions with pics from the insides of real apartments. Most of the posts seem to be from 20 and 30-somethings. Maybe they should start a coolest cancer apartments project just for us?

Better Homes and Gardens Arrange-a-Room is an online design tool that allows you to create a scaled drawing of your room and drag and drop furniture to see what will fit where best. Warning, this site is booby trapped with magazine subscription pop-ups, but the tool is so easy and fun to use it is worth it.

Has anyone else become obsessed with life within the four walls?
What are some of your best/worst cancer home project tales?

Thanks Paul Krugman for pointing out to me reason 152 why if I care about cancer I cannot vote for John McCain. But before I launch into Johnny, first a little lesson.

Do you know what “market-based health reform” is? Here it is in a nutshell:

1. Ditching insurance company regulations so they can vie for, or exclude us from, their business with little to no government oversight. For example, they could continue to exclude for pre-existing conditions, or for any other reason they wish.

2. Transferring health insurance from employer based insurance to individuals purchasing health insurance on their own. Mind you, without regulations, companies could charge whatever they damn well please for this insurance and exclude you for any reason. Under this system a part-time job at Starbucks would likely no longer provide you with an insurance back up anymore.

Paul Krugman brought to my attention an article by John McCain in the September/October issues of Contingencies, (the magazine of the American Academy of Actuaries). It is called Better Health Care at Lower Cost for Every American. In this article McCain expounded upon what he believes to be the brilliance of market-based health reform. Here is what he had to say:

“Opening up the health insurance market to more vigorous nationwide competition, as we have done over the last decade in banking, would provide more choices of innovative products less burdened by the worst excesses of state-based regulation.”

Wow dude, what a stellar idea. Yes, we have deregulated banking over the last decade and what a sweet spot it has landed us in. Maybe if we follow suit with healthcare, my cancer could go subprime. Maybe I could foreclose on my tumors too. But if we are going to follow in the footsteps of what lead us up to the Fannie Mae and Freddie Mac government bail outs, are we just waiting for Blue Cross and Aetna government bail outs too?

In a system of deregulation where the government simply steps in when big companies fail, why not step in with the government from the get go? Why not have regulations to avoid these kinds of belly up debacles. Oh, right that would limit the guys who run these companies to only being able to afford three or four houses instead of however many houses they currently own. How many houses do they own? Oh, I forgot, they’ll have to check with their staff to figure that out.

I’m not trying to incite obsessive compulsive disorder. Really, I’m not. I just know that many of us young adult cancer patients have immune systems that are as weak as twigs in a hurricane, and we are looking for new ways to avoid the latest plague. I’d like to share with you my most recent discovery in germ elimination.

After nursing my husband through a rather horrific bout of the stomach flu, I got crafty with a new technique for hosing down the germs in our apartment.

1. Get a bottle of spray cleanser
2. Remove the spray trigger and attached tube
3. Run and squirt water through it to flush out cleanser
4. Screw it into a bottle of rubbing alcohol
5. Open windows
6. Go crazy spraying down door knobs, faucet handles, toilet handles, cell phones, keyboards, and any other surface that can stand up to the task.

For some cancer survivors, the down side of alcohol fumigation may be the smell, which for many can trigger a PTSD response flooding the mind with images of blood draws and sending your gag reflex into a tizzy. On the other hand, perhaps you can look at this as not just an approach to cleaning, but also a method of systematic desensitization. For me, the smell of alcohol wins over the fear of catching the flu. This winter when sneezing, coughing friends leave my house after a dinner party, dishes are not the first thing I will be doing.

Whether you were diagnosed with cancer as a kid, teen, or during college, cancer can leave your cash flow high and dry, your credit cards maxed, and your college career at a standstill. Thankfully, loads of foundations and organizations are beginning to recognize this situation. Grants and college scholarship for us young ones with cancer are sprouting up everywhere. Hunting them down, however, can be a long and winding google hunt. Until now. Enter on the scene: CCCpedia.

Be one of the first to take a crack at the beta release of CCCpedia, which contains comprehensive and accurate information on over 100 organizations, totaling more than 3,000 scholarships and $5.8 million for young adult cancer survivors.

The CCCpedia scholarship database is a new project of Carolyn’s Compassionate Children - and no, that’s not the name of a soap opera or a Danielle Steel novel; Carolyn’s Compassionate Children is a non-profit organization started by Carolyn Rubenstein, who may well win both the queen of overachievers award and the Parker Posey lookalike contest. Carolyn started the organization in eight grade. She is now 23-years-old and the organization has a staff of three people working for her. Let them work for you too!

Have any of you ever applied for or received a college scholarship for cancer survivors? What was the experience like?

Gushing or weeping. I know tons of people who get pretty sentimental about cancer, spilling their tears over telethon speeches or Lance.  Me?  Give me a cheesy rock ballad sung by guys with wretched voices, set it to the choreography of slow movement animation, and my tears start to well.

I’m so terribly uncool that I have never heard of My Chemical Romance or their song Cancer. And the kick ass video that Danielle Baxter made has already been up on You Tube for over a year. But I just discovered it and am a bit speechless.   Danielle, despite your whole disclaimer that “if we think you made this video to be a ‘real’ portrayal of cancer, then we are sadly mistaken’, I say you nailed it.  Thanks to you and MCR for getting that cancer isn’t just for seniors and that even us young and pretty-darling young adult cancer patients can die from it too.   And lastly Danielle, I think you’ve got Gustav Klimt beat with that kiss.