October 27, 2008

Time Flies Tip #3: Bye-bye Natalia


I’m not a mail-order bride to-be living in Odessa. I don’t relish gothic rock, have roommates or HIV. I do, however, know what it is like to live with a disease that gives you a more realistic perception of life, and what it is like to butt heads with people who take life lessons from Bruce Springsteen and the power of positive thinking.

Curled up under the covers this morning, stoking my addiction to short fiction (I’ve read almost nothing other than short stories for the past two years!), I was glued to Michel Faber’s Bye-bye Natalia. I’m reluctant to say too much because I don’t want to spoil it for you. Whether you are a young adult cancer patient or not, if you find yourself in a waiting room, a chemo chair, or on the train with fifteen-minutes to kill, read this incredible short story and tell me what you think.

Chosen for the 2008 collection of O. Henry Prize Stories, you can buy the collection, borrow it from a library, or read the story online via this fairly obscure link.

Let me know what you think about her relationship to medical care, the United States, and falling in love.

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October 25, 2008

What makes someone HOT?


Sift through the Cosmo line up of The Hot Bachelors 2008. You’ll see white teeth gleaming on your screen, ripped six pack abs, and brown sugar tans. You’ll also see a boat load of mortgage bankers, sales reps, and for some reason dentists and dental school students. But the hottest of them all (and the rest of the country agreed) is Brad Ludden.

A world-class professional kayaker, Brad started the non-profit organization First Descents, which leads kayaking and climbing excursions for young adults with cancer. Most young adult cancer organizations are started by young adults with cancer. Brad does not have cancer. He started this organization because he identified a way that his skills, media attention, and connections could benefit others. Now if you ask me, there is nothing hotter than that.

Apparently others agree; Brad won the contest and will donate the $10,000 prize to First Descents to pay for ten young adults to go on kayak trips. Have any of you ever been on a First Descents excursion?

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October 24, 2008

Body Art in The O.R.


Missing a boob but not the one with cancer in it? Yep, it happens. Docs take out the wrong body part by accident. I once met a young cancer patient whose docs removed the wrong lung. Now that is a big damn deal.

I learned on the blog post Planning Surgery? Bring A Sharpie, in the Tuesday New York Times, that docs often use disposable pens to write on the body before surgery to ensure removal of the correct body part. Why disposable? To protect against the transmission of infection. Until now….. A recent study revealed that the alcohol content in Sharpie pens prevents bacteria from forming and would save hospitals thousands of dollars in costs because they are reusable.

Fascinating… yes. But not nearly as intriguing as the comments by blog readers (both patients and doctors) about body notes to docs:

When I get my annual exam every year, I write “NO LATEX” with marker on both of my inner thighs. I started doing it after I said to a nurse practitioner, at the start of an exam, “I am allergic to latex.” “Okay,” she said, reaching for the latex gloves. – MD

As an orthopedic surgeon doing about 300 arthroscopic knee surgeries a year, I have patients put black duck tape on the knee NOT to be operated on. It takes a little doing to rip it off to operate on the wrong knee, so the results have been good. Dr. Don Rosen

A Sharpie can also possibly be used in a “DNR” situation. Rather than rely totally on their procedures, you can write DNR on your chest or arm. — Look Sharp

A while ago, I was in the hospital with serious complications from mono. My spleen was enlarged and once word of that got out, interns kept coming by to feel what an enlarged spleen felt like – since I guess it’s a rarity. My doctor was afraid my spleen would rupture, so he wrote “Do Not Touch” on top of my spleen – with a sharpie.

As a young adult cancer patient, I’ve never had to worry about the wrong part being removed – I’ve had parts removed of which there are only one: my thyroid and boat loads of lymph nodes. How about you? Have any of you ever had the wrong thing removed in surgery? Have you ever worried about it? Do you have any stories of good O.R. body art?

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October 21, 2008

Desperate Times; Desperate Measures


I felt like a total dork today. I sent the following email to my friends:

Hello friends,

I’ve got a favor to ask of anyone who I might be hanging out with this winter. Because of my cancer, my immune system is shoddy. Some winters are worse for me than others; the last two winters I did very well, but this one is already off to a bad start with a cobwebby feeling in my lungs and an off and on fever for the last month. So, I need to be on germ patrol. I’m sure I sound like an OCD freak, but when Shannon and I have taken these militant precautions in the past, it has made a huge difference in my quality of life. I’d be ever so grateful if you can help me out by doing the following:

1. If we have plans at my house, your house, or out in the world and you have an infection, cold or flu, feel one coming on, are recovering from one, or have spent time around kids with green snot flowing from their nose, please let me know. I might have to take a rain check.

2. When you come into our apartment, please head straight to our bathroom and wash your hands with hot soap and water. And if you cough or sneeze try to cover up with your forearm, not your hands. This greatly reduces germ contact in our home.


From cancerland,

Over and out

Kairol

Desperate times, such as winter in Chicago, call for desperate measures, such as coming out of the closet as a germphobic, fascistic hand washer, but…

Do you ever feel excessively uncool or ridiculous when exposing your young adult cancer rituals to the world at large?
Do you barrel through, impervious to the difference between your life and those around you?
Or do you just stay quiet while your friends sneeze into their hands and then grab the pie server for another piece of pecan pie?

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October 19, 2008

My Joy from Other’s Misfortune

The incidences of new thyroid cancer cases are increasing faster than any other type of malignancy. Crack out the Schlitz it’s party time. If you have been recently diagnosed, I am benefiting hugely off of your misfortune. Here’s why.

Nestled in my neck, next to my jugular vein and other structures I’m quite fond of, are two tumors. I have thyroid cancer. Eight years and counting. What is supposed to be the easiest and most curable kind of cancer has not been so for me. I’m the outlier. The black sheep of the thyroid cancer family. This disease usually has a very high cure rate. After surgery and a round of radiation most patients quickly return to a cancer-free life. But, my tumor cells do not react to the radiation that is supposed to make thyroid cancer a so curable.

What are my options? Not many. Why? Because I am part of a small percentage of thyroid cancer patients and it is simply not profitable for pharma to invest in us few black sheep. That is until now… With the pool of thyroid cancer patients rapidly increasing, the pool of black sheep is rapidly expanding as well. Even though we are still the outliers, we are suddenly profitable because there are enough of us who are the exception to the rule.

Before, there was zero interest in finding new cures for those of us who do not respond to radiation. Now AstraZeneca and Amgen are eagerly pulling their chairs up to our table with new drug development and clinical trials. Can I blame them for not showing interest sooner, when our numbers were few? They are not in business to be altruist healers. They are in business to make money. As long as our healthcare system is driven by profits, they will flock to where the most money is, and unfortunately my greatest hope will continue to lie in other’s misfortune.

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October 17, 2008

The Fine Print


Last winter I was riddled with deep fatigue. After some sleuthing, my husband read on my medication insert that grapefruit was a contraindication that caused extreme drowsiness when combined with my medication. I most often chuck those bulky warnings slips in the trash without reading about medication side effects. After swallowing radioactive iodine pills that were quarantined in a hazardous materials room and could only be handled with forceps because it would burn your skin, rinky dink tablets from the pharmacy at Walgreen’s seem so innocuous. And I dare to call myself a proactive patient? Shame on me.

So today, in honor of the FDA’s new drug safety information web page, I am going to turn a corner. Last year legislators and healthcare activists fought hard to pass a mandate that requires the FDA to improve their transparency and communication both to doctors and to patients. I want to make their work worthwhile.

Included on this new web page are patient safety inserts, the findings of post-market drug studies that pharma is required to conduct, information about flagged and recalled drugs, and other goodies that in the past pharma and the FDA could keep hidden in their own private filing cabinets. Check out their page and become more proactive about managing your meds.

Do you read the warning labels and inserts that come with your prescriptions? Do you find it useful?

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October 16, 2008

Am I An Overly Sensitive Cancer Patient?



Or did you want to kick McCain in his gold plated teeth too? Maybe I AM overly sensitive. I see the world through the tainted lens of having been diagnosed with cancer at 27 and having had little break from it for eight years.

I’ve been one of the 13 million young adults in the United States who lack health insurance because of loopholes and/or unaffordable premiums. I spend my days writing about, talking to, and surrounding myself with young adults who were diagnosed at later, more advanced stages of cancer because they had no health insurance. Between navigating my preexisting condition status, fighting for COBRA, determining our out-of-pocket expenses, and tallying deductibles, my husband and I have spent enough time managing my health insurance to qualify the task as a part-time job.

I know a boat-load of women for whom the word cosmetic surgery means having tissue from your stomach sculpted into a replacement breast. I know scores of twenty and thirty-somethings, both dead and alive, for whom transplant means stem cells and bone marrow and being medically ushered to the brink of death in order to be given a chance to live.

So excuse the hell out me John McCain if I don’t think health insurance, gold plated Cadillac or not is a chuckling matter. Yes, I might be an overly sensitive cancer patient, but I don’t think I heard anyone else laughing either.

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October 15, 2008

One in 70,000

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?

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October 14, 2008

Times Flies Tip #2: Out-Of-Body Experiences

“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.

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October 10, 2008

Taming Cancer What Ifs

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?

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