Everything Changes - The Guide to Young Adult Cancer

Superficial Twit

There have been times throughout cancer where I have the intellectual capacity of a three-year-old and my attention span is nil.  I’ve tired of reading mind numbing glossy mags, yet could not surmount a thick biography or engaging book of history if my life depended on it.  Is there hope for a young adult cancer patient beyond feeling like a superficial twit, glued to television and waiting room copies of People Magazine?  Yes.

Dixie Cups, AIDS, and Georgia O’keeffe

Letters of The Century 1900-1999 is the perfect book for tired, weak cancer patients who are devoid of short-term memory, but still yearn to get their intellect up.  Broken down by decades, the first few pages of each chapter runs a bulleted list of the major cultural, political, and economic events: “The Dixie Cup and electric toaster appear.”  “Vermont widow Ida May Fuller receives the first Social Security Check – for $22.54.”  “The space shuttle Challenger explodes 73 seconds after lift off, killing seven astronauts aboard.”  The meat of the chapters are comprised of letters that speak to the times of that decade:  Profound letters, love letter, irate letters, letters to the editor, apologies, friendships, governmental exchanges. Voices are as wide ranging as Booker T. Washington, Georgia O’Keeffe, Richard Nixon, and the mother of an AIDS patient.

Letters of The Century is a chunky book to tote to chemo, yet in paperback, well worth it. Keep it by your bedside to read slices of history while you are waiting for a wave of nausea to subside or for your Ativan to kick in.  It’s the kind of book you can read from beginning to end, or pick pages randomly.  Best of all, each letter is only about one-quarter of a page to two pages long. This is history made convenient.

Click here for other Time Flies Tips

Do your cancer, chemo, or treatment side effects ever make you feel dumb as a stump?  Has cancer or other illness interrupted your reading habits?  What do you tend to read when you are sick?

It is flu season.  Everyone has the flu.  I don’t, but having just typed that, the tiniest threat of superstition is upon me and I’m afraid I’ve jinxed myself.

I think to many outsiders, the flu might seem like nada compared to having cancer.  In the grand scheme of things it is.  But my physical body doesn’t really live in the grand scheme of things.  Joint pain, chills, fever, and nausea happen in real time, not ‘grand scheme of things’ time.  In fact, sometimes I think having the flu is worse for me since my diagnosis because it resurrects so many bad memories.

Since cancer, I better understand the concept of post-traumatic stress disorder.  For some patients the smell of rubbing alcohol or the sound of shoes on linoleum bring back horrible memories.  Prior to my treatment, I had a three month long fever as a side effect from a preparatory drug. Having the flu careens my body back into those three months.  I feel like I am approaching the terrifying prospect of treatment.  In my mind I know I’m in present time, I’ve got the flu, I’ll recover, but my body is totally disconnected and heads straight for a five alarm panic attack.

Now, at the slightest sign of the flu – aching skin, a twinge of joint pain, sudden change in my body temperature – I don’t reach for vitamin C, Thera-flu, Echinacea, zinc, or Tylenol.  Instead I crack open my big orange bottle of xanax.

If you are a cancer patient, what is it like for you to have a common cold or flu now?  Any easier or harder than before cancer?  Does being sick make you anxious?  Do you ever feel symptoms of post-traumatic stress disorder?  If so, what triggers it?

You might remember Donald Wilhelm from the blog post ‘Should You Write A Cancer Book?’ He’s back today musing on the nasty little subject that none of us want to think about but some of us have to: recurrence. Donald’s new book This Time’s a Charm: Lessons of a Four-Time Cancer Survivor tells his real-life story from a patient’s perspective about surviving cancer four times.

Q: What is the stupidest comment someone said to you when you told them you had a recurrence?

A: Most people are sympathetic, but I have heard several times, “Well, at least you know what to expect.” Not helpful and unlikely to make it onto a Hallmark greeting card.

Q: When you meet recently diagnosed lymphoma patients do you reveal how many times you’ve had recurrences? If so, do you worry about scaring them?

A: I often go back and forth on this topic, especially if they’re Hodgkin’s patients. Overall, I usually tell them because it seems to put most people at ease. Most folks want to know that someone has had it worse than they have it.

Q: Did you ever have friends who disappeared when you were first diagnosed but were there for you during subsequent recurrences?

A: Yes, that does happen often. Some folks are just not comfortable with their own mortality, so being around someone who’s facing a challenge makes them uber uncomfortable. I don’t judge them though, because their reaction is simply a symptom of our society’s overall issues with death.

Q: How has your relationship to science changed with each diagnosis?

A: It has ebbed and flowed. At times I watch the latest studies into things like stem cell research and monoclonal antibodies. And with other recurrences, I just trust in my own body and my oncologist to kick its butt today with drugs we have now. All in all, it may likely end up being a combination that finally does the trick for me.

Donald’s book takes a detailed look at dealing with lymphoma recurrence. To buy a copy visit his website or Amazon.

Have you ever had a recurrence? If so, how would you respond to the questions I just asked Donald? Are your responses similar or different from his? What is the stupidest thing someone has said to you?

Odd One Out
When I was diagnosed with cancer, I lived in San Francisco.  I attended a young adult cancer support group with my great friend and co-cancer patient conspirator Seth Eisen.  Even in San Francisco, queer capital of the world, Seth was the only gay man in our support group.

A few years later, I interviewed Seth for my book Everything Changes.  I hunted endlessly for LGBT support services and advice specific to 20 and 30-somethings to include in a resource section that followed Seth’s chapter.  I turned up zilch.  To write this section, I grilled advocates at major LGBT healthcare organizations on issues that they had never thought about before: the difference between being young and old with cancer.  I’m a married straight woman and was stumping the LGBT community. Something is wrong with this picture.

The only way we will expand support of underserved segments of the young adult cancer community is by striking up good dialogue.  Listen and call in tonight to the Stupid Cancer Show, 9 PM EST when Matthew Zachary and I will be talking with Darryl Mitteldorf about young adult LGBT cancer issues.  

Whether you are gay or straight, what kinds of questions would you ask Darryl on the show tonight?  If you are an LGBTYACP, what are some of the biggest barriers you face as a young adult patient?  Do you feel comfortable being out in the medical environment?

With medical bills, college loans debt, and entry level jobs, most young adult cancer patients cannot stroll into Whole Foods and shell out $39.95 for a 5-oz. bottle of Dr Hauschka’s body moisturizer. But, that doesn’t mean you have to slather your skin or wash your hair with superfund site sludge either.

Beth, the blogger at smartfamilytips, has scoured the extensive Skin Deep Cosmetics Database in search of personal care products that are low in toxicity, affordable, and available outside of the bourgeoisie bodycare belt. Beth’s list includes products available at Target and CVS, and ranging in price from White Rain to Burt’s Bees. An important note that Beth makes is that just because one specific Pantene, L’Oreal, and Maybelline product is on the list does not mean that all of those company’s products are eco friendly.

Another option is to crack open the kitchen cupboard and your fridge. I’ve been using olive oil all winter long to moisturize. I have yet to wash my hair with eggs.

Has cancer made you want to reduce the toxins you apply to your skin and hair? If so, how does it affect your wallet? What brands do you choose to use? Do you ever venture into homemade beauty products?

Shopping List
Are you seeing double from treatment, immobile from surgery, or too fatigued to drive to the store for groceries but tired of asking your friends for favors? Learn how to make your food last longer so that you can make fewer trips to the grocery store. M. O’Connor, a commenter on a New York Times foodie blog offers the following tips, which I have adapted slightly.

1. Buy meat in quantity and pop into the freezer upon unpacking

2. Lettuce: Buy heads not bags, store with bottom end in a bit of water

3. Keep bags of frozen vegetables on hand (healthier than canned)

4. Rice, most dried beans, and pastas keep for ages on the shelf

5. Dried fruits have long shelf-lives, as do most nuts

6. Potatoes, onions, and apples last a while, store in a cool, dry place

7. Wrap hard cheeses in waxed paper followed by aluminum foil

8. Eggs last far longer than the date on the box,purchase many cartons
are a time. Read more about it.

9. Use canned or powdered milk for baking; eat oatmeal for breakfast

10. Keep butter and bread in the freezer, defrosting as needed

Pitfalls
This list contains some pitfalls for young adult cancer patients: you have to be able to afford to buy in quantity, have a large enough freezer, and if you are trying to eat organic or preservative free, your food will perish much faster than conventional food.

Have you needed others to do your groceries while you were sick? What made it go smoothly or not? What is the nastiest thing someone bought you when they did your shopping? (Mine was cozy shack pudding, which I ended up liking!) Have you ever gone without food because you couldn’t make it to the store?

Dude
A few years back my twenty-something co-worker and I were bored stiff. We had already played hooky from work 7 times to go snowboarding, smoked through a five-pound bag of pot we kept stashed with the extra reams of paper in the mailroom, blown our paychecks on iPod paraphernalia, pulled three false fire alarms, filed two fake workplace discrimination claims, and photocopied our asses at least a dozen times.

Staring into our Cup-o-Soups, my co-worker had a brilliant idea: “Why don’t you resign from your position, I’ll forget to submit your COBRA papers to the government, and then you can get diagnosed with cancer without any insurance.” Dude, how novel, that sounds like fun.

Fact Vs. Fiction
‘Young invincibles’ is a favorite term used by insurance companies, and perpetuated by journalists, that describes slacker twenty-somethings in stories like the one above, who chose to forgo insurance even when they could afford it. But the problem is the story above is actually fictional, as is the notion that twenty-somethings are a tribe of well-fed slacker who don’t want to waste their money on insurance.

I don’t snowboard, smoke pot, photocopy my ass, or own an iPod. I did, however, without planning, get diagnosed with cancer the week that my co-worker forgot to submit my COBRA papers, leaving me completely uninsured. Believe me it wasn’t by choice. Believe me health insurance is unaffordable, with or without a pre-existing condition. Believe me, young adults want insurance, we just cannot afford it. ‘Young Invincibles’ are not the norm. Here’s what is the norm:

• 46% of young adults report having medical debt, significantly changing their lives to pay medical bills, or being contacted by collection companies because they are unable to pay medical bills.

• 73% of employed young adult accept health insurance when it is offered to them, only slightly less than the 82% of adults 30 or over.

The Moratorium
So, I’m officially placing a moratorium on the phrase ‘young invincibles’. It appeared both in the New York Times today and on CNN’s website yesterday. I’m taking a vote on what you think the name should be changed to instead:

A. Impoverished kids who get the SCHIP boot when they turn 19
B. Twenty-somethings whose bottom of the career ladder jobs don’t offer benefits and pay next to nothing so they cannot afford the steep costs of health insurance.
C. Undergrad and grad students who are going to school part-time and working part-time and neither offer insurance.
D. All of the above.

Does the term young invincibles piss you off too? How many young adults do you know who do not have health insurance because they choose not to? How many young adults do you know who don’t have health insurance because they cannot afford it or are already in medical debt?

Want to find the best vegan burger shack in town or a late night sushi-karaoke bar? Turn to Zagat. Want to find a good doctor? Now you can turn to Zagat too. WellPoint, one of the country’s largest health benefits companies, is contracting Zagat to create a patient review system of doctors. How egalitarian, how patient powered, how much more can you miss the mark?

Italian Vogue?
This new Zagat system of voting and popularity contests will lead young adult cancer patients (and others) towards making less educated and poorer choices about their doctors. Here are a few reasons why:

1. What if 42 patients give their oncologist a high score because they love the Italian Vogue mags in the waiting room and the friendly smile of their oncologist but don’t know that this doc has four violations pending against her with the state medical board? Zagat is not the answer.

2. What if six patients give their oncologist a low rating because the wait is long and the staff is rude, but they don’t know that this oncologist just flew to MD Anderson last week as the foremost expert in the world on your specific disease type and stage, and presented a paper on a new molecular treatment that has fewer side effects and avoids the need for surgery? Zagat is not the answer.

3. What if a patient on Zagat has extensively researched an oncologist, stating he is the most highly educated in the city in lymphoma care, but the patient is basing this information only on the fact that the doctor graduated from Harvard? Harvard alone does not a good doctor make. Has this doctor published research? Is he or she an active member of the international oncology community? How do they continue to educate themselves? Zagat is not the answer.

Taking Candy from Strangers
If you’re visiting Chicago for the first time and trust a stranger on the street to give you a recommendation for the best pizza in town, the stakes are not so high if their recommendation sucks. But we are talking about cancer, not pizza. You should not take the advice of strangers but rather turn to the most educated, medically astute friends, colleagues, and doctors you know to become your advisors – not a group of joe schmoes on-line. (I talk more extensively about this in the Working The System section of my book Everything Changes.)

I’m not alone in this thinking. Most of the medical ethicists and docs interviewed on the subject in the New York Times agree.

How you do decide what doctors to use? Do you think the Zagat guide is a good idea? Would you use it?

What sucks more than cancer?  Being single on Valentine’s Day with cancer.  I might not be there now, but I was for many years.  So I’m throwing the first official Single with Cancer Valentine’s Day Bash on my blog today.

To celebrate, here is part of an interview I did with Melissa Sorenson a few years ago when she was 24 and living with lymphoma.  She told me the story of her boyfriend who we’ll call Daniel, to save the bastard from embarrassment. (Who knows, maybe he has transformed into a nice guy by now?)

Cheer Up Sweet Melissa?

“If I had a message to the men of the world who have rejected women with cancer it would be fuck you!  No.  You’re an idiot.  No.  You’re just selfish.  It’s so pathetic – do these men not think that they could get sick some day too?  It’s just bad karma.  Do they not realize that the next woman they are with could get sick?  Or that their parents might get sick someday?  I guess these men have never had to deal with anyone being sick around them and they don’t want the burden of having to start now.

Five weeks into chemo Daniel had a party.  I was pretty sick but I went anyway.  Around midnight I got this horrible, painful, weird feeling of illness just vibrating through my chest and stomach and legs.  I left Daniel’s party and went to my friend’s apartment to sleep.  I felt so lonely and scared.  I called him around 2 AM, when I thought the party was winding down, to ask if he’d come be with me. He didn’t want to leave the party.  I’m like, ‘Dude, these are like the only times I’m ever gonna ask you to do this.’  He’s like, ‘Can’t you just come back over here?’  I’m like, ‘I can’t sleep in the middle of a party.’  So he just never came.

There was a girl at his party who I just didn’t like.  You know how you get certain vibes?  I’m usually right about these things.  That’s why I listen to myself.  Women do have a way of knowing these things.  I woke up at 6 AM.  I wanted to go over to Daniel’s cause I knew that she’d be there, but physically I just couldn’t get up, I was too sick.  I waited and called him at 9.  I’m like, ‘Who slept over?’  I got it out of him.  I can always get it out of him.  And I was right.  That girl slept over in his bed.  Even his friends who love Daniel and think he’s a great guy are like, he’s a great guy but Mel you’re sick and he’s not doing what he needs to do for you.  A couple of times he called me from bars and I had a hunch that he was out with other women.  He’d invite me along but I think he was trying to cover because he knew I was too sick and would never make it out.

I finally decided it was easier to handle the heartache of ending it than it was to manage the stress of him going out drinking and being with other women.  I finally broke up with him on week 8 of chemo.  I have never been so depressed in my entire life.  Lots of people would write cards to me saying you’re so strong and inspirational for dealing with cancer.  I’d think, no, no, no stop it.  I’m not.  Everyone has their struggles in life.  And I honestly feel like going through love problems is worse than going through cancer sometimes.”

More Dirt?

Do you have any girl or guy bashing, broken hearted or dumped during cancer stories to share?  Any advice on how to ride the waves of being single or divorced or going through hard times with a partner during chemo?  Do share.

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?