Thursday, March 27, 2008

Questions

“How are you feeling?” People ask me that all the time now – especially those I see only occasionally. Or “How ARE you?” said slowly and with emphasis. “Is everything ok?” is another common one. All of these are code for “What’s going on with your cancer?” They are not inappropriate questions. The people asking them truly care about me, and want to know how I’m doing. I guess none of us is all that sure just how best to ask. I’m not totally sure how to answer either. I usually respond with something pithy and upbeat like, “Feeling great! Totally back to normal,” to let them know that I know what they’re really asking about.

I appreciate their concern and interest, but the truth is, I wonder if I will ever return to being just me, or will I always and forever now be the girl who had cancer? When I was in treatment, there was an outpouring of support – cards, phone calls (my cell phone bills were out of control), gifts, and visits. Those have ended now, and truthfully, I miss them. It’s such a balancing act – all this stuff that comes along with a cancer diagnosis. Many of us want to return to “normal” as soon as possible and never have any reminder that we were ever “sick.” Others immerse themselves in their newfound cancer community or get really involved with serving the cause – raising money, promoting awareness or taking some kind of leadership role.

I am somewhere in-between, I guess. On the one hand, I write a monthly column about my experience as a single woman dealing with cancer, and there are certain aspects of this disease and its causes that I think about regularly. On the other hand, I am completely confident that I am ok, and I don’t worry about the cancer coming back or think about it on a daily basis. None of us really knows, of course. The cancer could come back anytime, or strike someone new who just the day before never dreamed they would be affected.

Many cancer survivors have said there is no longer any such thing as normal, that we must get accustomed to a new normal. That idea makes a lot of sense. Cancer brings gifts as well as hardships, and for most of us, our lives will never be the same. For some, survival brings a new lease on life, the end to a destructive relationship they didn’t have the courage to leave before, or the advent of a new passion to explore personally or professionally. For others, it brings only surgery scars, early onset menopause and depression. Most of us probably have some combination of both the gifts and the doubts.
What is normal anyway? Does such a thing exist? And if it does, who really wants to be “normal?”

Whatever they are, others’ questions help us know that someone cares. This has always especially been the case for me. I’m not sure exactly where it came from, but somewhere along the way, I developed the idea that people who don’t ask me personal questions, don’t care about me. I have discovered that this is not always the case, but the idea persists for me nonetheless. Probably I feel this way because that is how I let others know I care about them – I ask them about their life, their recent trip, their ailing mother, or how their dissertation is going. It is my way of saying, “I remember that you went on vacation, and I’m interested in hearing about it because you’re important to me.”

A friend and I were having lunch the other day and she pointed out that we give others what we want them to give us. She brought it up in relation to her romantic relationship, but it really applies in any situation, and it is so true, isn’t it? The problem can occur when we fail to communicate what we really need, and assume the other person will just KNOW. Men complain about this all the time in regard to women. They want us to tell them what we want, but we too often expect them to divine it on their own – and some women go so far as to believe that if they really loved us, they would figure it out. Sometimes, even we don’t know what we want – we just know it’s something other than what we’re getting.

Given that, it’s important for us to ask ourselves the big questions as well. Two of the biggest are: Who are you, and what do you want? Some others: What makes you happy? What do you value? What can you not live without? Where are you going? What do you want to be when you grow up? What do you believe? The list is endless. Pick up a journal or sit down to meditate and start figuring out the answers. There is an old joke about Unitarian Universalists – the liberal faith tradition that I ascribe to – that we question the answers. Many turn to religion to answer their questions, and give them a theology to cling to. We, on the other hand, tend to stir up questions and encourage people to find their own path. That is probably why it appeals to me so much.

Whatever your questions, I hope you are able to answer them, and more importantly, I hope you have people in your life to ask!

Wednesday, March 19, 2008

Bad News & A Way to Help

Single Diva and cancer-survivor extraordinaire Vivy Porter won't be seen on Lifetime's Side Order of Life again this summer/fall. The network announced today that the show has been canceled. Or rather, they didn't really announce it, but quietly pulled it from the line-up. Go here to read more: http://www.pastdeadline.com/2008/03/there-will-be-n.html

I just read in this week's issue of Newsweek about a progressive cancer study being undertaken by the American Cancer Society called CPS-3. They are ambitiously looking for 500,000 people between the ages of 30-65 who have never had cancer. They have 23,000 so far the article says. The study will follow participants for 20 years in an effort to figure out who gets cancer and why.

Unfortunately, this study doesn't appear to be specifically looking at the one age group in which survival rates have not improved over the last 30 years - those 15-39 - however, the results will still provide much-needed information in the fight against cancer. If you are interested, go to cancer.org to learn more or click here to enroll in the study.

Sunday, March 16, 2008

You Are What You Eat

I ate dinner at Burger King tonight. I blame it on the crazy day I had – eating a late breakfast and working feverishly all day on too many projects, all of which seemed equal in priority, skipping lunch for an afternoon hair appointment which ran late, so that I was rushing back home to get my things for a meeting across town. It was only as I was sitting in traffic because of an accident that I realized how low on gas I was. I shifted the options back in forth in my mind: I can probably make it to the meeting and then get gas afterward. Followed by: I am already 20 minutes late because of the traffic, five more minutes won’t make that much of a difference, and I have an ironclad excuse. I got to the meeting 30 minutes late after stopping to put $5 in the tank – which barely moved the needle above E – only to find that the person I was meeting had also gotten stuck in the traffic and didn’t show for another 20 minutes. Meeting complete, it is now 7 p.m. and even though I had a pretty substantial breakfast for once, it had been ten hours ago.

I know that was a long story to justify my fast-food fix, and that what I described is familiar to many of you. The truth is, I feel the need to justify those now, whereas before I ate fast-food or delivery pizza 3-4 times a week without even thinking about it. Now, once a month seems like too much. As I was sitting there in the drive-thru looking at the menu, I realized why, with the triple-stacker staring me in the face – three beef patties, six strips of bacon, and three slices of cheese on a sesame seed bun – 800 calories, nearly 500 of them from fat. Suddenly, I understood why this country is having an obesity epidemic. These counts don’t even take into consideration the fries and drink! My double-cheeseburger kid’s meal – at 410 calories – paled in comparison to the other mega menu items. Since when did a triple anything become necessary?

As a cancer-survivor, I am more concerned about my diet than I was before, though I still wouldn’t consider myself a fanatic about it. I know other survivors who eat almost entirely vegetarian or even mostly raw vegetables now. I admire them. I don’t know how they do it – especially when traveling limits the options so much. Now that I work from home, it is easier for me to eat healthier with less planning ahead. I have never eaten a lot of junk food – potato chips, snack cakes or candy bars – though I do love an occasional hot fudge sundae or Little Debbie Swiss Cake Roll. But now I am eating much more broccoli, less meat, and I have even added kale to my diet. I didn’t even know what that was until a few months ago!

I did used to have a serious addiction to Coke. Mom wouldn’t let us drink it very often growing up (thank you Mom), and I rebelled in college by drinking about a six-pack a day. The zits and freshman 15 soon broke me of that habit, but it wasn’t until the past few years that I have been able to give it up almost entirely. (I did have one tonight as part of my kid’s meal, though milk and apple juice are now options too.) I mostly drink water now, rarely having anything else with meals – milk sometimes, and iced tea in restaurants.

The thing is, I believe that our overly-processed food is killing us. It is causing diabetes at staggering rates, obesity-related diseases through the roof, and yes, even cancer. I have been reading a lot about food lately, and we should all feel indebted to those authors who are exposing the problems with the corporate-driven, agri-business food supply and terrible eating habits in this country. Barbara Kingsolver, Michael Pollan and Kris Carr to name a few. Super Size Me and Fast Food Nation were also enlightening on the film front.

Ever wonder why there has been such a sharp spike in ADD and ADHD rates among children? Look no further than their sugar-laden diet. Who wouldn’t be hyperactive after eating sugared cereal and super-sweet juice for breakfast, drinking soda during the day, Twinkies in the lunch box, a mid-afternoon candy bar snack, and a huge bowl of ice cream after dinner? Sugary treats even masquarade as quick breakfasts on the go now in a variety of “bars” – cereal bars, breakfast bars and even granola bars pack in the high fructose corn syrup. In Super Size Me, Morgan Spurlock highlighted one Wisconsin school that eliminated all of its student behavior problems with one change. Instead of serving buy-in-bulk processed lunches, they bought locally produced food and made healthier meals from scratch. That’s it.

In his book, In Defense of Food, Michael Pollan notes that proportionally, Americans spend the same amount now as they did in 1960 on two major budget items – food and healthcare – only the percentage in each category has reversed. We now have access to cheaper and cheaper processed food-like substances, but we are spending much more on the diseases that this type of eating causes. As Pollan says, “Right now you have the food industry creating patients for the healthcare industry.” Doesn’t it make you kind of sick just thinking about how corporations are making large profits at the expense of our health? Pollan also suggests that if the government were paying for healthcare in this country, it would be far less likely to cave in to the food industry in making eating recommendations and setting policy.

We do have free will, and it’s time we exercised it by making better food choices. I have begun reading labels for the first-time ever. Pollan recommends we don’t eat anything with more than five ingredients or any ingredient we can’t pronounce. I also joined a CSA – these community-supported agriculture programs are popping up all over. Buy a “share” in the spring to support the seeds and labor of planting crops, possibly donate a little of your own sweat equity in weeding and watering, and reap the benefits of a big box of fresh produce every week through the summer and fall. Go in with friends though, as the shares yield large quantities of veggies.

It is very difficult, and often more expensive to eat healthily in today’s America. Choosing wisely from the menu is hard, and portion sizes are out of control. The large beverage of my youth is now smaller than the kid’s size at the movie theater. Many places don’t even have a small size anymore – it starts at “medium” or “regular” on the menu. Organically and locally grown produce is more expensive, and not everyone can afford to avoid processed and packaged food. Their price and convenience make them staples in lower socio-economic groups. However, farmer’s markets are growing in popularity, as are CSAs. Buying directly from the source has several benefits – you know where your food is coming from and can ask questions about how it was grown, you eliminate the middle-man, which can save money and also means your food wasn’t packaged and shipped for days to reach you, not to mention you are supporting the local economy and farmers with sustainable practices while creating a smaller carbon footprint at the same time. Win-win-win.

Finally, the slow food movement is catching on around the world. Started in Europe as a response to western fast-food creeping into their culture, slow food suggests that our eating should be based on quality, taste, environmental sustainability and social justice. It draws us back to a time when families sat down at the dinner table together to eat the same thing (and not individual meals nuked in the microwave). I have some friends who have hosted slow food events for groups of friends, and think it is a tradition worth continuing. If we truly are what we eat, we all need to be more intentional about what that is.

Side Order of Life

Lifetime Television's Side Order of Life, has one season under its belt. Many, many young cancer survivors are hoping for a second one. The show features character Vivy, a single woman in her thirties in treatment for breast cancer. Vivy has been called the first realistic, young cancer survivor ever depicted on television. For those of us living with this disease, that portrayal is an important affirmation that we too are living with the disease, and not being beaten by it. Keeping this character, and excellent show on the air is important as it will hopefully encourage other networks and entertainment executives to create similar portrayals.

The cause of keeping the show on the air has been taken up by the young adult cancer community. Andrea Wong, Lifetime's CEO has been deluged with mail and phone calls pleading with her to save this show. These kinds of campaigns have worked in the past. Please add your name to the list of survivors who want to continue to see good television like SOOL. Call 310-556-7500 and let Ms. Wong's assistant know you want to see the show back for a second season, or send take out menus to this address, and ask that SOOL be kept "on the menu":
LIFETIME ENTERTAINMENT
c/O ANDREA WONG
World Wide Plaza
309 West 49th Street
New York, N.Y. 10019

This movement is even getting some press in Hollywood. To read about it, go here: http://www.hollywoodreporter.com/hr/content_display/news/e3i2db2b6662428870c0daf12d4aafd0ef0

Friday, March 7, 2008

70K - Aged 15-39 Diagnosed with Cancer Yearly

I just found out about one of the coolest efforts on behalf of young people with cancer. Did you know there were 70,000 of us diagnosed every year? Did you know that while survival rates for most age-groups have improved dramatically over the past 30 years, for people 15-39, not so much. Not at all, even. Whether it's access to screenings or being taken seriously by doctors, this problem clearly needs some attention. If you support the rights of this group in dealing with their cancer diagnosis, please go here: http://www.seventyk.org/ and sign on as a supporter of this: (Watch the video too.)

Adolescent and Young Adults Cancer Bill of Rights.

We are neither pediatrics nor geriatrics,
we have unique needs - medically, socially, and economically.

However, the rights and dignity of adolescent and young adults are
equal and vital to all individuals.

We deserve to have our beliefs, privacy,
and personal values respected.

Access to care is a right,
not a privilege.

Our rights, as we perceive them to be and intend to preserve them, are:

  1. The right to be taken seriously when seeking medical attention to avoid late diagnosis or misdiagnosis, and entitlement to separate and confidential discussions regarding our own care.
  2. The right to affordable health insurance, as well as early detection tests unhindered by insurance or socioeconomic status.
  3. The right to be offered fertility preservation as well as current information and research regarding ongoing and potentially lifelong effects of cancer treatment that would affect our fertility.
  4. The right to be informed about available clinical trials and given reasonable access to them.
  5. The right to untethered access to adolescent and young adult cancer specialists and, when requested, a second opinion regardless of insurance or geographic location.
  6. The right to access a social worker or caseworker who is well-versed in adolescent and young adult cancer specifics.
  7. The right to “generationally applicable” psychosocial support.
  8. The right to have our insurance and position as a student or employee protected by law while dealing with our cancer in order to minimize discrimination.
  9. The right to clear explanations regarding the long-term side effects of our disease and its treatment, and to be offered all available and applicable physical reconstruction and rehabilitation options.
  10. The right to have all of our treatment options explained to us in full detail, to have our questions answered, and to receive clarification when requested so that we can be an active part of our own care.

Preserve our potential.

Hooray for 70K.org Help spread the word!