August 20, 2010

Crafting, Cancer, and Chronic Illness?

I’m a dreamer, not a crafter. I’ve got material for four baby blankets floating around my apartment. But, these newborns may be in middle school before they get their blankies from Aunt Kairol. (Some of it is nifty Amy Butler fabric to boot.)

If you have crafty visions AND the follow through to match, or if your friends and family are itching to do something productive for you while you are down and out with cancer or other chronic illnesses, feast your eyes upon these free pattern downloads for crafty patient projects:

*  Want a leopard print, tangerine silk, pink taffeta, or camo hospital gown? Try this pattern from Lazy Girl Designs.

*  If you are tired of visitors spying your pee-bag, this is an extremely simple pattern for a catheter bag cover.

*  In four steps you can crank out a polar fleece chemo cap .

*  For more great projects check out Sewing Stuff.

Purchasing fabric can really add up. If you are penny pinching, buy discounted pillow cases at Bed, Bath, and Beyond, cut up your favorite shirt that has a small stain on the front, or dig around discount bins at JoAnn and Hancock’s Fabrics.

Are you a crafter? What kinds of projects do you make? Have cancer boredom or the pain of healthcare costs impacted your craftiness?

For more tips on living young with cancer and chronic illness, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s

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July 27, 2010

16 Candles, My Cancer and The Khmer Rouge?

If I had another blog that was not about cancer, I would probably write this post there.  But I don’t.  I’ve got this blog and am happy to have you as my readers.  I’m not writing about cancer today, so if that’s what a want to read about, check out the archives. If you’ve been living with cancer for a while, like me, and want to think about the world beyond, have a read:

In 1984 I was a 12-year-old sixth grader waiting for boobs and hoping someday to become Molly Ringwald kissing Jake Ryan on a table of over my birthday cake.  Sixteen Candles came out that year, and so did the Killing Fields.  One of these flicks became my all-time favorite movie.  Sorry Molly, you’re cool but you didn’t win.

The Killing Fields is based on the true story about an American reporter, played by Sam Waterson, and Cambodian photojournalist Dith Pran.  It takes place in the 1970s in Cambodia during the reign of the Khemr Rouge, a communist regime that murdered over one-seventh of the population.

Growing up as a Jewish girl in Pittsburgh, I was no stranger to the concept of genocide; the Holocaust was all we talked about in Sunday school and Hebrew school.  I was also inundated with info about the oppression of Soviet Jews.  I had a Bat Mitzvah buddy in the USSR, a girl my age who was not allowed to practice her religion, and I drove daily past signs on neighborhood synagogues that said Save Soviet Jewry (though for years I thought they said Save Soviet Jewelery and imagined massive rummage sales taking place in basement social halls.)

Oppression was pounded into my head.  But it never took place in tropical climates.  It was about Russians waiting in breadlines or villages burnt to the ground in freezing Eastern Europe when my grandparents were still in their 20s.  Watching the Killing Fields blew my sheltered little mind.  The Khmer Rouge was shooting innocent people in the streets and murdering whole villages during the time I was 2 – 7 years old.

I watch the Killing Fields every five years or so.  With each viewing I learn more about the complexities or war, and the role reporters play in exposing atrocities.  And I’m reminded of my moral obligation as a citizen to be watchdog and agitator.

I feel a bit challenged (in a good way) by what to do with my professional life these days.  There’s a world beyond cancer and I want to use my time and smarts to impact it in the best way possible.  I read yesterday that an international tribunal found guilty the Khmer Rouge torture-chief Duch, and sentenced him to 35 years in prison.  It’s only a small, imperfect gesture in the impossible mission to bring justice to an incredibly unjust piece of history.  This summer, I’m denigrating my mind with reruns of Jersey Shore, eating farmer’s market food, and reading good books.  But mostly I’m brainstorming how to organize my life to be of use in big ways that matter.  I’ll keep you posted on what I figure out.

If you want to read about cancer care, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s. If you want to learn more about the Cambodia and the Khmer Rouge, check out this reading list from the Christian Science Monitor.

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June 26, 2010

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


Most of us need insurance, money, and love to make it through cancer.  But what about the smaller, less conspicuous items that helped you through the medical and physical challenges of surgery, chemo or radiation?

On my blog I often write about the emotional impacts of cancer, but today I’m all about the practical physical side. Most patients discover small must-have items, clothing, food, or paraphernalia that helped us to physically manage daily life. Here are mine:

1. Zip-up hoodies – I couldn’t lift my arms over my head to put on a shirt after surgeries for thyroid cancer

2. Paper cups and straws – During surgery they dug around in my neck and shoulders. So sore in that area, I couldn’t lift a glass or mug to drink but paper cups and straws saved the day.

3. Pillows – A mountain of pillows, even big couch cushions, were great for propping me up in bed and taking pressure off my neck.

4. PB Sandwiches – Unable to eat packaged or restaurant food while on a low iodine diet (pre- radio-active iodine treatment),  a friend baked loaves of no iodine bread and I popped zip lock bags of peanut butter sandwiches into my purse whenever I left home so I wouldn’t be stranded without food.

5. Friends’ Old Clothes – There are strict protocols for washing clothes after radio-active iodine treatment because sweat makes them contaminated.  Friends gave me five days worth of old comfy clothes they would have donated to Goodwill anyway.  I chucked them in the trash after wearing them. No laundry and no clothes with bad memories.

Pick your top five items (or more if you’d like) and leave them in the comment section, noting the kind of cancer you have and what your treatment or surgery was.  Don’t worry if someone already mentioned one of your favorite items – duplicates only reinforce how necessary and helpful the item is.

For more practical tips on coping with cancer, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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June 11, 2010

Are You More of a Risk Taker Since Illness?


I often hear that people live more fully, more passionately after having a life threatening illness, doing things they have never done before. Not me. Since going through cancer treatment, I have a whole new relationship to physical risk. I just cannot stand it.

I used to love hiking – scrambling up rocky hillsides, walking on narrow cliff ledges, going into the total isolation of deep, deep woods. Not now. Instead of freeing adventures I see in hiking mostly risks – falling to my death, injuring myself far away from help, stumbling across snakes.

Radiation treatment was hell for me.  I reached new lows I never knew were possible.  My body now feels hardwired with the message “You are breakable.” I drive like a grandma because I know I’m breakable. I wash knives more carefully in the sink because I know I’m breakable. My fears don’t limit most of my daily activities, nor do I feel like I’ve become obsessive about protecting my body from injury. But I am surely less of a risk taker than before cancer.

I often read about people who have the cancer epiphany – realizing they had always been playing it safe or quiet in life, seeing that they’ve only got one chance to live, they come out of their shell, give life their all.  Again, not me.

I never had a cancer epiphany.  I have always lived passionately and given life my all.  I’ve always striven for my dreams, thought outside the box, not really cared what people thought of me, and rarely took no for an answer. I’m the same me, living that same life. But now, I just do it with a lot more physical precaution.

Since illness, are there new activities you’ve been provoked to do – large or small?  (Sky diving anyone?) Or, have you limited the situations in which you put yourself at physical risk?  Do you have some version of washing the knives more carefully?  Have you reached physical lows from surgery, treatment, or side effects that you never thought possible?  Did this change you?

Read about Geoff’s dare devil cancer acts in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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May 27, 2010

Thyrogen Shortage: Get the Facts

Thyrogen is a damn expensive shot (not always covered by insurance) that simulates the experience of being hypothyroid and allows thyroid cancer patients to undergo full body scans, and sometimes even treatment, while still on their hormones. I have used thyrogen and it is remarkable. While on thyrogen I was able to work and function as a normal human being. It was heaven compared to the other times I had gone hypo without thyrogen and was so fatigued I felt like my marrow hurt, my hands went in and out of paralysis, and I could not physically take care of myself.

So, you can imagine my concern when I learned the FDA announced this week that due to operational manufacturing problems, Genzyme will have to halt production of thyrogen. The injection will be limited to patients whose doctors deem it “medically necessary.” Here is what medical necessity is based on:

1. Patients undergoing initial radioiodine ablation of thyroid tissue remnants, post-thyroidectomy, deemed to be at significantly increased risk of side-effects/complications from undergoing thyroid hormone withdrawal.

2. Follow-up testing of patients considered high risk for thyroid cancer recurrence (those with 1. macroscopic tumor invasion, 2. incomplete tumor resection, 3. distant metastases, and possibly 4. thyroglobulinemia out of proportion to what is seen on the post‑treatment scan) and who have unmeasurable basal thyroglobulin (Tg) levels and are deemed to be at significantly increased risk of side-effects/complications from undergoing thyroid hormone withdrawal.

The FDA has complete information listed here about what qualifies as increased risk of side-effects and complications. If you are concerned about obtaining thyrogen, read the linked info, print it out, take notes, and discuss it with your doctor.

Have you ever gone hypo for full body scans or radioactive iodine treatment? Have you ever used thyrogen before?

To learn more about thyroid cancer, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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May 20, 2010

Facebook, Twitter, & Cancer: Fluffy or Smart?

Facebook and twitter (like a phone or radio) can be used as fluffy, brain draining diversions, or to have sophisticated conversation about issues like access to affordable care and clinical trials. So how do you use social networking to be an educated and effective cancer activist instead of a slacktivist?

Seductive social media campaigns entice us to mobilize our networks to vote for projects where the most popular cause receives money and/ or exposure. (Take the Pepsi Refresh campaign – they’re so brilliant for not buying Superbowl ads this year when they can rent our brains for free on facebook instead.)

The problem with these online campaigns is popularity does not equal value. The popularity of a project, a person, or organization has zero to do with their efficacy, necessity, skills, or smarts. Plus, cancer is about much more than contests, awareness campaigns and fundraising. In fact, most cancer issues that impact our lives are about science, industry, politics, prioritized evidence-based research, and policy. If you don’t understand these words and how they relate to cancer, you will not significantly impact the future of cancer prevention, outcomes, and quality of life measures.

I don’t have a degree in science or public policy. But I know what I’m talking about when I stand in a Senator’s office asking that Congress demand more funding from the National Cancer Institute for young adult research. And, I can write good letters to my newspaper asking that pharma not be allowed to hold a patent the BRCA gene. I’ve educated myself about these issues online, and facebook and twitter have played an increasing role. To make a serious impact as a cancer activist, consider these tips:

1. Multiply By Five.
Keep track: For each tweet or facebook message you post or comment on, spend five minutes reading a journal or news article about healthcare policy or scientific research. The topics and jargon may seem foreign, but the more you read the more you’ll understand. If you don’t have this much time to spend reading, then you’re spending too much time on twitter and facebook!

2. Retweet Only What You Read.
Retweet information only if you have read the entire article/post, have an opinion about it or can ask an intelligent question, know who wrote it and their motives, and think it’s valuable to others. You’ll have fewer tweets/updates going out which in turns elevates the quality, rather than quantity, of conversation in the cancer community.

3. Get Stingy With Your Time and Attention
I don’t waste my brain or clog my inbox by joining any old facebook group. Before supporting an organization ask: Is the staff or director spending more time on facebook and twitter than working on the backbone of their mission? Are they filling a niche high on the list of cancer priorities and goals? Are they willing to speak up on controversial issues if it benefits their constituents? Will they educate me? @bcaction @cancerandcareer are great orgs doing it right!

4. Nix Online Petitions
E-letter and online petitions hold very little weight with elected officials. If you get an online petition, research the cause and if you support it, call your representative and write a letter to the editor.

5. Old Fashioned News Feeds
I still subscribe to daily and weekly email updates from professional sources and journals. Why? Because the smartest, most effective people I know are not spending their time twittering or on facebook. They’re engaged in science and policy and write more than 140 characters about their discoveries.

How much time do you spend on facebook or twitter. Do they change your knowledge or feel like a brain drain? Any tips for making the most of social media?

For more tips about how to spend your cancer time online, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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May 18, 2010

Power of Positive Language?

In response to my post Power of Realistic vs Power of Positive Thinking, H Lee D (aka Heather) left the comment that she’s always spoken about her cancer in the past tense. She said “I had cancer” even before she was cancer free.  This kind of language isn’t for me and isn’t found in my book Everything Changes.  I’ve never been in remission and pretending to be is medically inaccurate and too far from the emotional reality of my life.  Plus, I’ve never seen scientific evidence that our minds or our language can change the biomachanics of our tumors.

But Heather is one smart cookie, who has left dozens of insightful comments on my blog and sparked incredible conversations. So I wanted to better understand why she speaks in the past tense and asked her to write this guest post:

“I had cancer. This is how I spoke of the tumor in my chest, even before my first chemo treatment – in the past tense. My choice of language wasn’t denial — I was completely aware that after two-and-a-half weeks in the hospital, I had just been diagnosed with lymphoma and needed six months of chemo plus radiation.

Almost a year prior, I attended a three-day work training at the K-8 school where I teach. We learned to create visualizations and affirmations, and how and why they are effective. A piece of the training I used through cancer (and in other parts of my daily life) was putting myself where I wanted to be. Act as if it is so. Fake it til you make it: I had cancer.

My first clean PET scan was two months after my first treatment — earlier than medically anticipated. I believe my use of language, affirmations, visualizations all influenced my clean PET scan, but I certainly don’t give them full credit.

This is the basic premise: Your brain likes things to match. For example, if you believe you are clumsy, your brain helps ensure you trip over nothing, so that you are clumsy. Then your belief and your reality match. If you can convince your brain of something you want but currently aren’t, your brain will do what it needs to do to make everything match. It’s important to choose something you can visualize. For example, I can’t imagine myself running a 4-minute mile, so visualizing it would be futile. But I can imagine myself running a 10-minute mile, so I start there.

I alerted close friends and family that I was planning to speak in the past tense about my cancer hoping that they’d think me slightly less insane. No one said anything to me at the time, but their body language and confessions later revealed that they thought I was nuts.

When I called my mother-in-law to share the good news about my first clean scan, she said, “Well, you were right. I thought you were crazy, but you were right.” The oncology counselor at the hospital told me later that she thought I was in denial but had since come to realize that I just had a different outlook than most.”

How do you speak about your cancer? Have you ever used the past tense and if so when did you start? Do you believe language has the power to change biological processes?

Heather is a 34-year-old teacher, wife, friend, dog-mom, dancer, musician, triathlete, dreamer, personal trainer, not necessarily in that order. Check out her health and fitness blog

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May 04, 2010

Tips for Visiting Someone Who’s Sick?

In the midst of radiation treatment my home was like grand central station with visitors coming and going all day long. I needed the help and the company, and was grateful to have people stopping by.

But for some patients, having visitors isn’t as easy or welcomed. Many folks don’t want anyone around when they look and feel like crap. Others want privacy and alone time. And lots of guests just don’t know how to behave in the best interest of the sickie.  So, I’ve come up with  a list of  tips for both patients and visitors:

For Patients

- Nobody is a mind reader. Email friends and family about your wishes.
- Think about who you are willing to have see you at your worst.
- Let people know if it is not okay to visit at the hospital or at home.
- Clearly broadcast your energy level and the length of visit you’d like.
- Demand people stay away if they have germs.
- If you’ve got a roommate or partner get clear with each other so if you have different desires you don’t send mixed messages to guests.

For Visitors

- Have awareness. The goal is to be helpful, even it means staying away.
- While visiting, ask what you can do to help out around the house.
- Sometimes help without asking. If the trash is full just take it out.
- Never stop by unannounced.
- Don’t overstay your welcome.
- Silence can be comforting. Offer to sit together without talking.
- Think about visiting with the sick person’s kids, partner, or caregiver allowing the sick person time to just rest

What are some of the best and worst stories you have about people who visited you when you were sick? Do you have any tips to add to the list?

Check out more about the dynamics of family and friend visits in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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April 25, 2010

Do You Manipulate Your Docs for Attention?

Was it because I was twenty-seven, a woman, or both that my doctors doubted my capacity to participate in serious dialogue about my cancer? They presented me with only the thinnest shreds of pre-digested information about my care. I played a constant charade to glean from them answers that reflected the complexity of my disease. My greatest asset: my InterArts degree in theater and choreography.

Acting classes taught me how to build a facade. I held back tears instead of bawling. I straightened my spine with confidence instead of slumping in defeat with the news of recurrence after recurrence. Employing gripping, direct eye contact, I forced my doctors to focus on me instead of shuffling papers.

A quick improviser, I read and responded to my surgeon and endocrinologist in a flash, returning their comments with complex questions. I packed rapid-fire dialogue into my five-minute appointments, the clock no longer an excuse for their Patient-101 spiels that were rungs below my level of medical comprehension.

Abandoning the role of dumbed-down patient, I favored playing a mentee eager to learn from my doctors. I changed my costume accordingly. While I preferred the snuggly garb of hoodies and sweats that accommodated my cancer lethargy, I instead wore skirts, v-neck sweaters, and makeup.

As I perfected my charade, the time, attention, and intelligent answers I received from my doctors increased. My surgeon started joking that he was going to make me his fellow and take me on rounds.

I began to wonder if I was subtly whoring myself to my doctors to get the care and consideration I deserved. They were all men. My legs are ridiculously long and I look pretty hot in a skirt. Would I have succeeded if I were overweight or wore my favorite Old Navy fleece sweats? And, if my doctors were women would my tactics still work?

When I spoke about my findings from studies I researched on Pub Med, I sandwiched my statements between heavy doses of wit and charm. Did my doctors’ male patients have to play the ditz game to camouflage their smarts?

Over the past ten-years, my doctors and I have often changed the course of my treatment based on rational problem solving ideas I presented to them that were frequently in opposition to their initial orders. I’m proud of the care I’ve received. It wasn’t always handed to me. I worked hard for it, falling apart tired to the bone when I came home from my appointments. Am I any less proud because of the tactics I used? Not at all. I’ll leave that shame for my doctors.

Have you used tactics to get your doctors to pay more attention to you or answer your questions on an in-depth level?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how other young patients manage appointments and hospital stays.

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April 15, 2010

Love-Hate Relationship with Over the Counter Meds?

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.

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