Everything Changes - The Guide to Young Adult Cancer

I work hard. I’m in love. I pour my heart into taking care of my friends and relatives. I show gratitude. I don’t own a TV. I pet my dog. I walk in crunching leaves. I try to eat well. I’m in touch with my emotions. I read. I vote. I educate myself. Shit happens too. And I deal. Whether I want to or not. Whether it is easy or not. Whether there are solutions or not. I don’t concern myself too much with self-help checklists for living the good life. This may sound incredibly arrogant, but I think I’ve got it down. Or at least I thought I had the good life down. Until last night.

Last night when I hit play on a Girl Talk YouTube music video, I experienced a transformative moment (and believe me, I use quite sparingly new age babble like “transformative”). Flying from my limbs was full force dancing, the likes of which I have not choreographed since I was ten years old making up dances to Michael Jackson in Amy Burkoff’s basement. I did not care that my dining room blinds were up and my neighbors had full view. My world completely disappeared; I was one with Girl Talk.

I live the good life, but last night I was larger than life. A larger than life state of mind is not new to me, nor is it induced by the fact that I am a young adult living with cancer. In fact, the bullshit of cancer compounded by my current workload and family responsibilities has made me anything but a gushing spectacle of love and gratitude. I’m not into the ‘cancer made me a better person’ perspective. It’s just not true for me. I think I was a pretty good person to begin with.

What I am into is the perspective that every once in a while, a perfect moment occurs that helps me shed the skin of distress and fear and allows me forget my life for a while. You don’t have to have cancer, diabetes, cystic fibrosis, or any other kind of disability to tune into this kind of larger than life experience. All you have to do is listen to Girl Talk’s new album Feed The Animals.

‘Carry a water bottle with you everywhere,’ is the answer I most commonly hear when I ask young adult cancer patients for practical tips on how to get through chemo. I don’t want to instigate enviro-paranoia, but I do want to talk about solutions to recent news that the chemical in hard, plastic water bottles can interfere with the effectiveness of your chemo.

Tara Parker-Pope, healthcare blogger for the New York Times, recently wrote the post Plastic Chemical May Interfere with Chemotherapy. Here’s the gist: Bisphenol-a, (a.k.a. BPA) is the chemical used to make polycarbonate, the ultra-durable plastic used in hard, clear water bottles. (Not the soft plastic drinking bottles like an Evian bottle – which has also come under scrutiny, but the hard plastic bottles like a Nalgene bottle.) A group of University of Cincinnati scientists recently tested on human breast cancer cells moderate amounts of BPA typical to the levels found in the average human’s bloodstream. They discovered that a protein was induced that protected the human breast cancer cells from being destroyed by chemotherapy, much the way that estrogen does. In effect, BPA can reduce the effectiveness of chemotherapy.

While this news might reek of quacko-conspiracy, this study was not funded by a bunch of crunchy hippies in Berkeley. It was funded by Susan G. Komen, the National Institute of Health, and the Department of Defense (lots of breast cancer funding comes from DOD, but that is a whole different post.) The FDA is even reviewing the safety of BPA and is getting their hands slapped by their own science panel in the process.

Instead of freaking out about the chemo and hydration situation, I asked blogger Catherine Perry (whatthehellcanieat.wordpress.com) for some practical solutions. She recommends drinking from unlined, BPA free stainless steel water bottles. “Make sure your stainless steel bottle doesn’t have a plastic liner inside, which may leach BPA. Also, canned foods have been shown to be the predominant source of our exposure to BPA (from plastic lining inside). So along with switching bottle types, try to eat more fresh foods and use ceramic, glass, or unlined metal containers for storing and heating food.”

If my best friend Jana, an enviro-queen from Seattle, and Stuff White People Like, are predictors of encroaching trends, I think we’ll start seeing stainless steel water bottles popping up everywhere. Most importantly, make sure you’ve got one next to your chemo chair.

Do you chug water? What kind of container do you use? Do reports like this make you want to change your containers, or do you not respond to this kind of info until the FDA releases a product warning?

Mammogram: $15 co-pay
Pap smear: $15 co-pay
Trip to a shrink: $20 co-pay
State regulations: priceless

MasterCard. Visa. Have you ever noticed that most major credit card companies are headquartered in Delaware or South Dakota? Not shocking. These states have the least stringent regulations for credit card companies.

Freedom to choose. This is one of John McCain’s selling points about his healthcare plan. He boasts that we as Americans will have the freedom to go across state lines to choose insurance companies. What he doesn’t tell you, is that this same freedom will also allow insurance companies to close up shop in your state and move to the state with the least insurance industry regulations. If this happens we as consumers will be screwed.

Let me give you an example. I live in Chicago. Illinois is one of 28 states that require insurance companies to cover cervical cancer screenings. If McCain is elected president, my insurance company could create national headquarters in Utah, the only state in the country that does not require insurance companies to cover any women’s health screenings. Even though I live in Chicago, my paps would no longer be covered.

I don’t give a shit what the candidates say in their position papers on cancer that they submitted to the Lance Armstrong Foundation and posted on their own websites. Cancer screening, clinical trials, and access to quality, affordable healthcare saves lives. If insurance companies have the freedom to set up shop in the least regulated state in the country, we as a cancer community will lose.

If you care deeply about reducing cancer deaths and suffering, it is your obligation to do more than buy pink bling, and participate in bike and walk-a-thons. It is your duty to understand the connection between cancer and the candidates, and vote for Obama. The election is one week away. If you or someone you love cares about cancer (or diabetes, or mental health issues, or children’s healthcare) and is considering voting for John McCain, please sit down with them, and kindly and persuasively explain to them how John McCain’s free market system is going to cost lives.

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.

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?

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?

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?

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.

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?

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.