October 20, 2009

How Smart Is Your Favorite Organization?

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Bigger isn’t always better.  More isn’t always better.  Louder, snazzier, cuter, more prolific isn’t always better.  But I think smarter IS always better.

I was recently asked how I decide what organizations I donate to.  A few years back the head of the American Cancer Society blew me away.  He said increased access to health insurance could reduce cancer mortality rates just as much as scientific discoveries.  Who cares if we find cures that nobody can afford?  Hundreds of thousands of Americans die because they cannot afford proven cancer treatments. This doesn’t take complex microbiology to fix. All we need are better public policies.

I’m only donating to organizations providing education and action in support of the public option.  Surprisingly, no cancer organization is doing this work in a serious manner.  So I’m donating time and money to orgs supporting real healthcare reform like Campaign For Better Health Care, and Health Care for America Now.  Moral: Don’t just donate, donate smartly.

On Monday’s Stupid Cancer Show, we interviewed Diana Balma, Executive Director of Stand Up to Cancer.  These folks aren’t just dishing out cancer research grants the way most foundations do.  Rather than encouraging competition between scientists working in separate labs, who don’t share critical information, SU2C is creating and funding dream teams of scientists who collaborate.

Throwing $73 million at cancer research doesn’t impress me.  But giving $73 million to cancer research in a way that changes the model for how research is conducted – that’s very impressive.  Moral: Don’t just do research, do research smartly.

Yesterday I learned Planet Cancer (a young adult cancer organization) is merging with the Lance Armstrong Foundation.  Many organizations duplicate services, raise money but don’t prioritize their budgets, promote their name but have no useful programming, or are working in a vacuum.  Why?  People’s egos and desire to do good sometimes gets in the way of what is useful.  Not Planet Cancer.

Combining the clout and resources of the Lance Armstrong Foundation with Planet Cancer’s know-how in serving young adults is a super smart move.  Moral: Don’t just run an organization, run an organization smartly.

Who do you donate to and why? What are some of the smartest projects in the cancer community? Do you agree that smarter is better?

Read the Making A Difference section of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more smarts about making change.

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October 19, 2009

Fear of Pain Killers or Pot?

high-carousel

I’m no angel.  In high school I smoked a lot of pot and hash.  A straight-A student, who rarely smoked on school days, I felt completely justified getting bake on the weekends. I wasn’t looking for a mellow buzz; I loved getting completely messed up.  I had a blast being stoned with my best friend, laughing uncontrollably, and satiating the munchies with hot fudge sundaes and donuts at 4AM.

I partied hard in high school and got it out of my system. I haven’t touched drugs since I was 21. I never felt addicted nor did I have a master plan about being a drug-free person. Feeling totally out of control had been fun, but, gradually, the experience of seeing rooms spin like a carousel and hearing people talk in slow motion felt out of control in a bad way.  So I stopped.

I hate feeling drugged even more so now because it amplifies how out of control I feel living with cancer in my body.  I chose not to take painkillers after my surgeries, swallowing my pain instead.  It took months of convincing by doctors until I finally popped my first xanax. I fear that most medication will make me feel foggy and out of control.  Surprisingly, xanax just relaxed me with no fog, no out of control feelings – a welcome experience in  the midst of scans and cancer care.

In the ‘Coping With Pain’ section of Everything Changes, I interviewed Dr. Diane Meier, one of top palliative care experts in the country.  She talked to me about the most common myths of pain meds.  I learned that when pain medications are properly prescribed and managed they can really help relieve suffering.

I’d love an honest conversation about our fears around using pot and narcotics for pain relief, and to hear some positive experiences of how they have been helpful. (I’m not so interested in a conversation about legalizing medical marijuana – I think far too many stoners are using our cancer as their platform for legalizing pot.)

Do you have a fear of prescription narcotics or marijuana?  Do you have success stories about working with doctors, nurses, palliative care specialists to relieve your pain through narcotics?   Have you used marijuana to ease treatment side effects or pain? What was it like? (Feel free to reply anonymously if you’d prefer.)

Read about how Geoff, a 22 year old druggie, got clean during chemo in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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October 16, 2009

How Do You Handle Fear?

cowardly-lion

Fear is something I have experienced much of in the last nine years since my diagnosis, and my feeling is that it is not something that I “surmount” or “overcome”, but something that I go “through”.  It is not always pleasant, and coming out on the other side is not always a victory march. Sometimes the only benefit to living through my fear is the reminder that I am human and that suffering is part of the experience.

Sounds depressing huh?  Well not really.  For me I think that living through fear is the stuff that compassion is made of.  It is what allows me to understand and empathize with other people’s suffering.  When writing and researching my book Everything Changes, I sat in the living rooms of so many twenty and thirty-something  cancer patients who confessed to me their most private thoughts about living young with illness.  They talked to me because I listen and I get it, because I have been there and done that.  And when I say been there and done that I’m not talking about cancer, I’m talking about walking through fear.  Fear is a monster but it is also a common denominator that connects me to other people’s experiences of life.

I am living with two tumors in my neck that don’t uptake radio active iodine treatment and there is a limit to how many surgeries I can have.  Sometimes fear is too much for me and I have to check out from it by sticking my head in the TV or popping a xanax.  I cannot walk through fear 24/7.  But I do walk through it a lot.  And it’s scary.  I’d so very much prefer living an alternate life with an alternate medical history, but I do recognize that living with fear just means that I am human, and for now, I have to take what I’ve got.

How do you cope with fear?  Has the way you handled fear changed the longer you’ve lived with illness?  Did you have any idea just how much the cowardly lion looks like a cheap drag queen?

To learn more about how other young adult cancer patients cope with fear, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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October 12, 2009

Has Poetry Helped?

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A great part of being an author and blogger is all of the emails I get from readers who I never would have met otherwise.  Rich Devlin is one of those people.

Rich sent me a riveting poem a few weeks ago called The Price of Survivorship, which you can read below. He recently lost his wife of 38 years to breast cancer, and lost both of his parents to cancer too.  He has two young daughters for whom he is “scared to death.”  I’m curious to hear your response to his poem.

Have you ever written poetry during your or someone else’s illness?  Do you have any favorite poetry or poets that you read to get you through the rough times?  If you have any favorite poems, written by you or another poet, please leave them in the comment section for me and others to read.  Come on Luke, I know YOU do!

The Price of Survivorship

Slides
d i s s o l v e
one
after
another
headless, legless torsos
prophylactic
r e c o n s t r u c t i o n
before & after surgery
latest techniques unveiled (proudly)
with clinical precision (emotionless)
silicon or saline (choice)
risk of rupture (real)
possible asymmetrical results (very fine print)
abdominal incision (aka. “tummy tuck”)
Tattooed areolas (optional)
Synthetic nipples (possible)
necrosis (occasionally)
mounds
of
molded
flesh
devoid of feeling.

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October 08, 2009

Are You Welcome in the Cancer Club?

aloha

“Are you going to write in your book about the people who died?  It is so depressing,” a person in the publishing world asked while I was writing Everything Changes.  My answer: a polite version of “You better f***ing believe I am.”

How could I write a book about cancer and exclude the people who died and their families?  Yep, it has its sad moments, but that’s why cancer sucks.  That’s why we raise money for research.  That’s why I write a blog and wrote a book, and promote young adult cancer organizations: all so we can support each other around the pissy hard times.

Charissa is an recent widow who I’ve become friends with.  She is an incredible woman who I adore.  (See her recent post Mourning As A Young Adult?)  And I love my regular communication with a few different patients who are end-stage.  The death aspect of other people’s cancer experiences does not freak me out.  I don’t know why.

There are,  however, many young patients barreling through illness who do choose to steer clear of relationships with end-stage patients and grieving partners.  I do not judge these patients for giving a cold shoulder to death and hence a brush off to other patients and families facing it. The need to cocoon yourself from death when you are a young adult trying so hard to live does make sense to me.  Plus, I have papillary thyroid cancer – a disease from which very, very few people die, so I’m never faced with the question of communicating with someone who is dying from my disease.  Maybe it would make a difference to me… maybe not..

But let’s look at the other part of the equation: The patients and families who are facing death.  They’re still part of our community.  Cancer doesn’t end when you stop taking chemo.  Cancer doesn’t end when you enroll in hospice.  Cancer doesn’t end when your partner, who had lymphoma, has been dead for nine months.

Yet, I talk regularly to end-stage patients and grieving families who say they feel unwelcome in the young adult cancer world, from seemingly simple conversations where patients insist that everyone is a survivor and nobody is a victim, to feeling unable to express their fears of dying or phases of mourning in chat rooms, at conferences, and in support groups.  That stinks.  And it needs to change.

Have you ever avoided dying patients because they feel unhopeful to your own survival?  If you’re end-stage, have you found support in the young adult cancer world and what do you want that you aren’t getting?  If you are grieving, do you want to stay connected to the cancer community and how have you been received?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Spoiler alert: most of the people are still living but not all of ‘em.

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October 06, 2009

Random Acts of Cancer Kindness

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During my first cancer treatment I was scared and in pain. I wanted hope and an escape, reassurance and strength. It came in the mail.

I received a hand written letter full of empathy and understanding from a guy named Brian. He had suffered from Crohn’s disease and knew what it was like to feel young and beaten down. He told me to remember often the time in my life when I felt the most proud of myself, to remember the details of that moment and how it made me feel. It would get me through the worst of times, he said. And he was right.

I remembered a dance performance I created two years before my diagnosis. I worked so hard and fiercely designing the movement, costumes, the sound score, and an intricate backdrop. I worked with an opera singer, live musicians, and dancers. I wove together their stories with historical documents. At the end of each performance the audience and performers were teary eyed.  It made people think and open up. It was the shining moment of my lifetime.

When I was my lowest during treatment, I took Brian’s suggestion and showered myself in the memories of this hard work and sense of accomplishment. It stirred in me the feeling that I could do anything. In moments when I wanted to die, these memories reminded me about the best parts of living, and that I wanted to make more work that would deeply affect people.

Here was the clincher though: I didn’t know Brian. We went to the same college. He heard about my cancer through the grapevine and went out of his way to obtain my address and send me that letter. Someone who I don’t even know played one of the biggest roles in getting me through the emotional treachery of my treatment. Years later, I’m now trying to find him. I’d like to say ‘thank you’.

Have you ever received wisdom, advice, gifts, cheering on or help from strangers?  Have you ever given it to a stranger in need?  Do you have a “most proud moment”?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about the stranger who sat with MaryAnn and got her through her hardest day of treatment.

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October 02, 2009

Using Sex to Sell Breast Cancer?

breast-cancer-painting

If my sexual history came with a transcript, you could read that I am anything but a prude.  So in my interview today with Newsweek, why am I so down on the ‘Save the Boobs’ ad campaign that consists exclusively of Canadian MTV host Aliya-Jasmine Sovani (a non-breast cancer patient) strutting her bouncy stuff in a string bikini with the message ‘you know you love them, now save them’?

Supporters of the ad say that being snarky, rebellious, and over the top is how we stake out the territory of the young adult cancer message. But what happens when there is actually no message?  This ad is about breasts.  Not about cancer.  So, are we reverting back to avoiding the C-word because we think it’s too grim to sell our own cause?  Is my cancer just too un-hip, un-revolutionary, un-cool for my peers?  I don’t think so.

What if we keep the gorgeous colors and sensual suspense of the ad, but saw a hottie in a bikini walking only in profile, and when she turns to face forward, we get the lopsided view of her as a breastless young woman with a mastectomy? It would be a racy, educational ad, with a message about why we need breast cancer research funding for young women.

Using sex to sell cancer instead of beer or cars isn’t a brilliant revolutionary branding tactic.  It’s an obvious, easy ad campaign that misrepresents the reality of cancer, and is a slap in the face to men by assuming the only way they can be empathetic to women in pain is by getting off on her breasts.

The ad has received 350,000 You Tube hits.  I suspect the majority of views are replays from guys pleasuring themselves in front of their laptops who still don’t remember what the ad is for; who would likely never flirt with a bald girl in a bar; and who still hope to crawl into bed with Aliya-Jasmine and have no clue that real, 160 pound, size A-cup, 25-year-olds are walking around with prosthetic “ta-tas.”

What do you think?  Do you like the ad?  Is it revolutionary to sell cancer with sex?  Do you know someone with breast cancer and do you feel proud of them when you watch this ad?

Read more about the real lives of young women with breast cancer in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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October 01, 2009

How Has Your Employer Handled Your Illness?

your-fired

Do you have an angelic boss who has made accommodations for your illness?  Or, have you been wedged out of your workplace, or cornered into a position where your job is so miserable you want to quit?

ABC News interviewed me today about asking for sick leave and keeping your job. I offered them lots of tips and advice, but they don’t work unless you follow them.  (Duh.)

Lots of us are pals with our co-workers, bosses, and employers.  Some workplaces can feel like home, family, and the center of our social lives.  Sometime patients assume they don’t need to follow the rules because our bosses are supportive people who care about us.  It’s easy vent to them about our medical woes, lean on co-workers for emotional support, and assume our boss will do everything in their power to accommodate our illness.  Some will. And some want to but cannot.

Illness costs employers money.  No matter how kind your company may be, sometimes it’s hard for them to afford the hike in health insurance rates caused by your illness.  Your sick leave might slow a project down costing them more money.  Or maybe they have to spend extra work hours finding and training your replacement.

I’ve met plenty young adults who are shocked when their chummy employer isn’t able to make friendly accommodations or even lets them go.  That’s why I think it is important to avoid sloppy workplace boundaries.  No matter how friendly the environment, I think it’s always best to play by the rules: Be formal, friendly, honest, prepared, concise and orderly about discussing your illness in the workplace.

Were you nervous about disclosing your illness to an employer? How has your employer responded to your illness? Is it consistent with how they treated  you prior to your illness?  Any surprises along the way from supervisors or co-workers?


Read more about tips for navigating workplace issues in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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September 29, 2009

Ever Chewed Out a Healthcare Worker?

sinking-nurse

My hospital is around the corner from Gucci, Coach, and the Apple Store.  (Swank huh?)  I’m sure sneaky shoppers try to park in the hospital garage at patient rates.  It’s the front desk staff’s job to make sure they don’t.

A few years back, I had a particularly horrible post-surgery appointment: The doctor was great but the news was bad.  It took three hours and involved an unexpected and painful biopsy of newly found tumors.  The doc explained why the samples looked extremely suspicious of cancerous.

Shannon and I were crushed, our minds fried, our bodies exhausted.  We waited in line for the elevators, made it down to the lobby, and waited in another line for parking validation.  “I can’t do your ticket.  I need to see that you were at a doctor’s office.  Go upstairs and get them to initial a blue slip,” the front desk woman said while multitasking on her cell phone.

We know the parking routine well, but we totally spaced this time.  I pointed to my fresh, turtleneck-sized bandage. “Ms., I just had a surgical procedure.  I’m a cancer patient in a lot of pain and need my husband to get me home fast.  I don’t think I can make it back upstairs.  Can you call my doctor’s office for verification?”   No.  She would not budge.

As Shannon began the trek back to the doctor’s office, I told her to get a job where compassion is not needed, where she doesn’t have to think too hard or interact with cancer patients.  I dropped plenty of F-bombs into my statement.

Yesterday was Yom Kippur, the Jewish holiday where you atone and ask for forgiveness. This incident came to mind, even though it was a few years ago.

Living with an incurable illness can be infuriating. My mother always says honey goes farther than vinegar. And she’s right.  But I’m human and have my breaking points.  Especially when it comes to inefficiency or stupidity in the medical system. The perfect, ethical, Girl Scout side of me says two wrongs don’t make a right and there are appropriate ways to direct my anger.  But the realistic side of me says cancer sucks, and if you are going to act like a total idiot to me on a really bad day, I might act like one back and not feel too badly about it.

Have you ever gone off on a medical worker?  Did you feel justified?  Did you ever apologize?  Do you think I should have apologized?

Read more outrageous exchanges between cancer patients and medical staff in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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September 23, 2009

Can’t Sleep At Night?

sleeping-in-a-boat

I keep waking up at 4:48 AM.  Sometimes a few minutes earlier or later.  I hate it.  But I know I’m not alone.  I’ve talked with a handful of breast cancer bloggers this week and discovered we all use blogging as a great way to deal with being awake at night.

Sometimes I can clearly identify what is keeping me awake: a doctor’s appointment or test on the horizon.  Sometimes even good events:  my excitement a few weeks ago about being interviewed as a young cancer patient on Fresh Air with Terry Gross (she is my #1 role model/heroine.)  But, often I’m just up for reasons I can’t figure out and I don’t particularly feel like scavenging the back of my mind to find the answer.

When I’m up, I get out of bed, go to my laptop, and work.  Lately it’s the only thing that distracts me – even when I lay in bed reading, my anxious thoughts take over the words on the page.  But, there must be a more peaceful middle ground in the hush of my night between tossing and turning and slamming into work mode.

People with weakened immune systems seem to need sleep the most, but the very nature of us being sick is often what grates on our minds keeping us awake.  A recently published article in the Archives of Internal Medical shows that people getting fewer than seven hours of less have less resistance to cold viruses than people getting eight hours or more. 

One thing that I know helps me is I never describe my being awake as insomnia.  (Though I can see how for people with a serious sleep disorder it is a useful term that helps you get appropriate treatment.)

Do you ever have a hard time sleeping?  Is it better or worse at certain times?  What do you do when you are awake at night?  How does it affect your life?

Read Everything Chanages: The Insider’s Guide to Cancer in Your 20s and 30s to learn about the about profound thoughts that other young adult cancer patients have when they are up at night.

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