Everything Changes - The Guide to Young Adult Cancer

With 300+ posts on my blog about cancer and young adults, it can be hard to know exactly where to start.  I’ve compiled a list of the top ten posts that continue to get thousands of hits.

Top-Ten Posts

1. Your 5 Must-Have Items from Surgery & Treatment Time?

2. Do You Like Being Called Strong?

3. How Do You Prevent Errors in Your Care?

4. Smart Responses to Stupid Comments?

5. How to Ask For Your Medical Bill to be Reduced?

6. Your Best Advice To A Newly Diagnosed Patient?

7. Power of Positive Thinking vs. Realistic Thinking?

8. Did Cancer Impact Your Finances?

9. Scared of Every Little Ache and Pain?

10. Have You Ever Seen A Therapist?

Special searches.
If you are looking for a specific topic, scroll down the right side of this page, click on ‘Hot Topics’, or use the ‘Search’ box just above that to enter keywords about issues that are on your mind.

If you have been reading and commenting over the years, thanks to contributing to the popularity of the blog.  If you are new, welcome aboard.

Over and out,

Kairol

I first posted this piece last summer, but knew I had to revive it when I got a great request from ChronicBabe for posts on the theme of chronic illness and humor:

Last week, I was interviewed in a Newsweek article about young adult cancer humor. I’m, not a very funny person. I’m just not. Don’t worry, I’m not being harsh on myself. I think I’m smart, compassionate, and fairly attractive. But, I’m just not very funny.

I love to laugh, but my humor is particular, maybe even stubborn. I can’t rent dvds from the comedy section; I just don’t find them funny. Nor do I find cancer jokes very funny. So, it was really hard when Newsweek asked me to contribute some jokes to the blog that accompanied the article. Here’s what I sent:

*What do you call a young adult cancer patient with health insurance? A Canadian.


*Why did the cancer patient cross the road? He wanted to get hit by a truck.

These jokes are the best I could do.

I’m not above cancer humor, and I’m not particularly politically correct. I just have a hard time laughing at something that has killed a lot of people I love, and caused me and my family enormous pain and distress. I have plenty of laughter in my life. But I don’t want or need it to come from my illness.

Jill Harrison, a young survivor in the article said she feels humor can be a cover up for issues we have a hard time talking about. I agree.  (Though I see exceptions, like Heidi Adams who is both a total jokester and very real about hardcore cancer issues.)

I find it strange that cancer is something people often relate to through humor. Why is that?  I never hear people cracking jokes when someone says their dad died of a brain anurism, or that their apartment was charred in a fire. Yet humor seems almost like a branded expectation put on oncology patients.

I feel like the cancer community often dumbs me down, like I need a little slap stick song and dance routine to make it through. And as a result, I see very little time devoted to the the hardest conversations of it all. Did you know that almost 1 in 4 young adult cancer patients won’t make it? How many resources are there talking about end-of-life care for young adults? Almost zilch. And that’s not funny.

When we start actually addressing the really, really hard side of cancer, maybe then I can start laughing about the rest of it. But probably not. I think cancer might always be serious to me. Instead, I’ll spend my time laughing at Cake Wrecks. Yeah, I do find some things funny. Just not cancer.

What is your take? Do you laugh at your illness? Is it ever nervous laughter or good medicine? If you have a disease other than illness, do you find that humor and light-heartedeness is used in your patient community?

Check out my book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s.  I didn’t think it was a funny book, but readers have told me it caused the kind of laughter that makes beverages squirt out your nose.

I’ve long been afraid of medication, even over-the-counter meds.  Since way before my cancer diagnosis, I was scared of what the side effects could do.  I opted for just feeling my pain or taking natural remedies instead.  But having cancer changed some of that for me.

I used to not even take Tylenol for a headache.  Now I toss back two extra-strength at the first twinge of pain.  I want to nip pain in the bud because A) Feeling pain sometimes launches me into a cancer PTSD anxiety spiral and B) Since cancer I feel like I have filled my life time quota of pain.  Why have any more than I need?

Without going into huge detail about my bowels, I’ll just say that my doctor wants me to start taking a medication that contains aspertame and might make me feel bloated and crap a lot.  (Or it might not.)  The sample is sitting on my kitchen counter.  I don’t want to take it.  And then I laugh at myself.  Aspertame is ridiculously benign compaired to the hundreds of milicuries of radioactive iodine I’ve consumed.  Can I have made it through cancer treatment and still act like such a wimp about over-the-counter, pink lemonade flavored medication?  Indeed, I can.

Has going through a serious medical illness changed your relationship to having to take medication?  Are you more or less likely to take over the counter pills now?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how young adults can manage pain.

I’ve had to live with jobs that were way off my career path just to pay my health insurance.  Heidi Adams, executive director of Planet Cancer, is going to be asking President Obama about this very issue on ABC Primetime tonight live at 10 PM EST.  The program is called “Questions for the President: Prescription for America” (Must see young adult cancer TV.  Go Heidi Go!)

During cancer treatment I lived on disability.  Afterwords I needed a job with health insurance.  In my book Everything Changes, I wrote about my day job working for a non-profit organization that helped ex-offenders. “I sat in church basements with rapists and murderers (a remarkably respectful and nice bunch of guys) teaching résumé writing and feeding them the organization’s line that if you work hard enough, you can achieve anything. These men and I knew this was bullshit, that life’s circumstances don’t necessarily comply with will or effort.”

The job had ups and downs.  The downs: My employer’s insurance agent called me nonstop asking when my cancer would be gone so their healthcare rates would go down.  I worked 40 hours a week, the pay was lousy, and I had no reserve energy to write or choreograph.  For the first time in my life I was utterly non-creative.  So much for living your dreams after cancer, right?

The ups: I had health insurance.  And, the men I taught were pretty cool.  After going through cancer it was great to be surrounded by people who were also struggling to adjust to “normal” life.  They made me feel like less of a freak.  We were good company for each other.  Is it pathetic that ex-cons made me feel normal?  I don’t think so.  We were all just people trying to cope with change.

How has cancer and the need for health coverage impacted your work life?  What jobs have you taken that you would not have otherwise?  What were the ups and downs?  Are you job searching now or returning to work and how are you handling it?

I’ve searched the far corners of the young adult cancer world. If pressed to crown a queen, I’d place the tiara firmly on Heidi Adam’s head.  She’s the founding director of Planet Cancer.  When Heidi speaks, people should listen.  So listen up to what she wrote today:

“Yesterday I attended a meeting sponsored by the LIVESTRONG Young Adult Alliance to take a first stab at drafting guidelines or standards for institutions wanting to launch Adolescent/Young Adult Oncology programs. Now I want to ask you: WHAT DO YOU THINK AN AYA PROGRAM ABSOLUTELY HAS TO HAVE TO REALLY MEET THE NEEDS OF YOUNG ADULT PATIENTS? Bring it on-from the smallest detail to the biggest concept, give me your wish list for an AYA program so we can make it happen!”

Thank you Heidi.  My motto as of late is “quit bitching and start thinking.”  Think about where you have been left high and dry by the cancer community or your medical institutions. Translate them into truly useful suggestions for Heidi and leave a comment below. 

What changes need to happen? Where did you want support but did not find it (childcare, financial, health insurance navigation, access to clinical trials, a place to study or work at the hospital, info about fertility and sex)? How could your cancer experience have been made easier? What programs have you participated in or services have you received that were fantastic and you think should be replicated?

Disclaimer: I live under a rock, don’t own a TV, and have never read a print copy of USA Today.  I’m pretty okay with all three statements.

Kudos to Grey’s Anatomy for: showing young adult cancer along with family and fertility issues, illustrating melanoma as a serious deadly disease, and revealing that advanced cancers do not have a quick fix solutions but involve super challenging choices between two evils with no guarantee for favorable results… if you are lucky.

But, damn Grey’s for not getting it right.  An article in USA Today says Izzie’s options not accurate: surgery, with memory loss as a side effect, or interleukin-2.  American Cancer Society confirmed that IL-2 is never recommended for melanoma brain mets because it can cause bleeding and strokes.

Grey’s consults with MDs, so why can’t they get it right?  Are they just dialing up the drama on the storyline?  I’ve been living with cancer for nine years and there is plenty of drama to go around with my story just from the very accurate and real life details.

Does Grey’s do more harm than good with this storyline?  Good: It spurs discussion and awareness.  This article highlights one of my all time favorite orgs, Planet Cancer, and quotes JT, one of the most amazing people I’ve ever met.

But consider this quote from Otis Brawley, the chief medical officer at ACS: “Many people view the cancer problem as much simpler than it actually is. That’s because they get their medical information from television shows. But television shows are by and large fictional, and much of the medical information there is also going to be fictional.”

Do you watch Grey’s?  Does the storyline do more harm than good?  What does it say that instead of covering healthcare policy, a major American newspaper is covering the TV coverage of a fictional cancer patient?  And have I just lowered my standards by blogging about a USA Today article?

I was on myplanet today and read a member’s status “I am trying to get a hold of myself.” I think we can all relate to this if we are dealing with a cancer diagnosis, chemo, radiation, waiting and watching, or another illness, or any kind of life fiasco, such as unemployment.

I spent two days on the Yakama Reservation with young adult cancer survivor Holly Anna DeCoteau Pinkham. (Some of you know her from Planet Cancer and LAF too.) I included the juiciest parts of our conversation in my book. Here is piece of HollyAnna wisdom that really stands out to me when I think about getting a hold of my life:

“Sometimes when I’m starting to crash, I go to the mountains and watch the water. Water doesn’t fight its way down the hill. It takes the path of least resistance. Still, there are rocks in the water, and that is how I look at cancer. It’s a rock. I’ll go around it, over it, under it if I can. I’m not going to fight it. Instead, I’ll let it figure out how it is going to guide my path. You have to figure out how to work with the momentum cancer establishes in your life. Otherwise, you’ll drive yourself nuts. So I have to go up to the mountains, and I remind myself that I’m like the water.”

“Fight” has become the mantra of the cancer world. I love that HollyAnna steps out of the boxing ring and ditches the “fight” while remaining an empowered, intelligent, and all together kick-ass patient.

Where do you go when you need to get a hold of yourself? (I love being a big imposing library, getting lost in it all.) What centers you or calms you? Do you have metaphors like Holly Anna’s water that get you through? Have you ever thought about not fighting? Does that scare you or give you more energy?

The last time I confessed my morbid little day dreams it was a real hit both here and at Planet Cancer, so here I go again:

Confessions

Wondering what to do once you’ve croaked with your iPod, journals, and the IRA account you opened two years ago? If so, you are not alone. I’ve met tons of young adult cancer patients who write and rewrite their wills in their minds - even if death is not imminent. You hear the word cancer and it’s just natural to wax morbid. Sometimes it even feels comforting.

Well, I’ve got a new one. My Uncle Bill died this weekend. He was a fantastic human being, a doctor who taught to med students classes in doctor patient communication, and a prominent clinician whose research on Downs Syndrome changed the lives of thousands of children. (He was buried with a Grover puppet – how great is that!) I was reading his obituary and noticed three Downs Syndrome organizations that people could donate in his honor.

It got me thinking, if I got hit by a bus tomorrow, or if this cancer deal took a turn for the worse, would people know where to donate in my honor? What if they chose some ridiculous cancer organization that was all about pharma and pink ribbons and gave no money to young adults with cancer? That would suck.

Earmark

So I’m going to send this post to my family to make it known that should I step off a curb tomorrow when the #147 is flying along Sheridan Road, this is where I’d like people to donate in my honor: Planet Cancer, and earmark the funds especially for their Advocacy Roadshow program that will educate physicians about detecting and diagnosing young adult cancer patients at earlier, more treatable stages. How many of us struggled to get diagnosed because we were told by doctors we were too young, we must have pulled a muscle in yoga, or were hypochondriacs? Never again. Maybe I shouldn’t wait for death – perhaps I should forgo Chanukah presents and have my mom and dad send the money to Planet Cancer instead.

Do you let your mind wander to thoughts about your death, your funeral, or wills? What do you do with the morbid little nasty thoughts that pop into your mind? What organizations would you choose to have people donate to in your honor?