Everything Changes - The Guide to Young Adult Cancer

I don’t watch television news.  The reasons are many.  Here are the ones that relate to my cancer:

As a young adult thyroid cancer patient, my immune system is vulnerable.  The sniffles to someone else usually lands me in bed for two weeks. I am hyper vigilant about my health.  At times even a hypochondriac.   (See my post Scared of Every Little Ache and Pain.)  I will likely always have some amount of hypochondria, but I have learned that to control and reduce my anxiety around illness.

There is needful worrying about my health.  It is perfectly natural for me to be scared about an upcoming scan. There is also needless worrying about my health. Obsessing over colds and viruses does nothing to improve my quality of life.  While I cannot flip off the worry-switch, I can reduce my exposure to hype.

When I heard of the potential flu pandemic, I wanted to more info.  While at my grandma’s house I caught a two-second TV news blurb: an interview with a pharmacy manager at Wal-Mart.  Not helpful.  On NPR, I got a conversation with a woman who lives in my neighborhood who isn’t letting her kids go to the Children’s Museum.  Not helpful.

So I got rational.  I went online to seek useful stories instead of sensationalism and quotes from credible experts instead of the average Joe.  Fear sells and it is easy to produce.  It takes a lot more work to seek out my own news sources instead of it being spoon-fed health hype.  But I value my sanity so I make the extra effort.  I am still the Purell Queen and stay as far away as I can from extra-germy people and environments.  The idea of getting the flu is horrifying.  So I’ll turn off the TV think about something else instead.  I am sure in a week or two the news will have moved on to new and scary ways I might die.

To read more about cancer and anxiety, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

In preparation for appointments with my doctors, I search Pubmed.gov, a free online database of nearly every medical journal and article in print.  I read articles related to my cancer, print them out, and share them with my docs to review new options for my care or confirm we are on the right track.  As a young adult cancer patient, I have been doing this for nearly a decade.

I enter a search term into pubmed.gov. (Here are some general examples of search terms: ‘tamoxifen resistance’ or ‘radioactive iodine uptake’ or ‘testicular protheses’.) Next I click on the title of an article that sounds like a good match.  Then I read an abstract, a one paragraph summary of the article, to see if the full article will be of use to me.

Sometimes a link is provided to “free full text”.  But the biggest stumbling block is when the “full text” link leads me to a page where I must purchase an expensive copy of the article from the publisher of the medical journal.  $30 for an article, that may or may not be useful, is not in the financial budget of most young adult cancer patients I know.

Luckily, I recently found Loansome Doc.  It is a system developed by the National Library of Medicine.  It connects you to a health science library in your region through which you can order online the full text for free.

The process of signing up and getting an article is a bit confusing.  Set aside a half-hour to become familiar with Loansome Doc:  Read the FAQ about Loansome Doc.  Click through the maze of links.  If you need extra assistance in finding a regional library to connect with, call 1-800-338-7657, Monday - Friday 8:30 AM - 5:30 PM. Then ask the librarian in your region to help you with the process. It is a bit of a hassle, but aren’t the potential pay offs worth it?  I think so.  Being an educated patient can increase the quality of your life and sometimes even save your life.

For more tips on how to research your cancer and treatment options, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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I was diagnosed with cancer at age 27 and have gone on to become a major advocate in the young adult cancer community.  It is truly incredible to see how many people rally around the cause of cancer when they or a loved one is touched by this killer disease. Gun violence is a disease too.  And one that can be controlled a lot more easily than cancer.  With gun violence we don’t need to spend over three decades unlocking the secrets of science.  We simply need strict gun policies, enforcement, and regulation.  Gun shootings and gun deaths are preventable.  I didn’t beat cancer only to get gunned down in a shopping mall, temple, or movie theater.

Here are some facts from the Violence Policy Center that recently startled me:

“Firearms are the second most frequent cause of death overall for Americans ages 15 to 24.”

“Direct medical costs for gunshot wounds total more than six million dollars a day. Nonfatal gunshot wounds are the leading source of uninsured hospital stays in the United States, with an estimated half of such costs borne directly by the public.”

I fight so hard each day to help improve the quality of life for young adults and to reduce the out of control costs and tame the haywire finances of our healthcare system.  Young adult cancer touched my life, so it is an obvious way to focus my efforts.  If I could have prevented getting thyroid cancer I certainly would have.   If I can prevent myself and my loved ones from becoming victims of gun violence, why wouldn’t I?

I am learning about the smartest, most effective ways for me to engage in the movement to end gun violence. I have signed up for action alerts from the following reputable organizations and I contacted the White House and my members of Congress to express my opinions.  I hope you will do the same.

Demand A Plan - Easy steps for contacting Obama and your Senator

Violence Policy Center Action Network

Brady Campaign to Prevent Gun Violence

Coalition to Stop Gun Violence

Please share this post and resources with other friends and loved ones in the cancer community!

I have always been a geek for research, and often on dark topics.  In tenth grade I wrote a 15-page paper on infanticide in China.  In eleventh grade, my English term paper was on Sylvia Plath’s suicide and her parents’ holocaust experiences.  I have no idea why I tend to such morbidity; I am really a very happy person.

When I was diagnosed with cancer at 27, it was second nature for me to dive into research and learn as much as possible about my disease and supportive resources.  My surgeon joked that I could join his fellows on rounds.  Oncology social workers often commented that I knew more than they about the benefits available to me.

I’ve earned a reputation as someone good at helping people make sense of recent diagnoses.  I am asked regularly, by strangers, friends and family, to gather information that will lead to efficient and sensible care in hopes of alleviating their suffering. I am so used to people wanting my help that for the first time, I have approaches to a family member’s heinous medical condition and nobody is interested in my findings.

Inside I am a four year old throwing a temper tantrum shouting, ‘Listen to me! Listen to me!’  How do doctors deal on a daily basis with patients ignoring their prudent recommendations, opting instead for poor health choices?  It isn’t that my ego can’t handle it; It’s my heart that’s having a hard time not being able to lessen the pain of someone I love.

I cringe at spiritual jargon, yet a few times today I have thought of the serenity prayer.  You know, the shtick about accepting the things you cannot change. I’m also thinking of the cliché horse whom you can lead to water but you cannot make him drink it:  You can lead a patient to a great list of top docs but you cannot make them call.

As a young adult cancer patient, people have offered me unsolicited advice, mostly about alternative and natural medicine.  Their well-intentioned suggestions make me want to smack them upside the head.  And, even though my suggestions to others are based on science, clinical trials, and the highest standard of care, when my ideas are unsolicited, I supposed they too want to smack me.  It is hard to accept that people we love are just going to lead the lives they want, not the ones we want for them.

For tips on how to conduct smart research about your disease, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.