When I hit my 40s, I was happy, healthy and very, very busy. I was a caretaker for someone I loved. I was writing books. I took up golf, learned about scuba diving and participated in my first triathlon, doing lots of TV work, creating my clothing lines… I was really living life, taking care of myself, eating well and getting regular massages was a part of my regimen.

But I started feeling tired after spin classes, my breathing was becoming an issue and I had to stack 5 pillows under my head when I slept, and a cough made voice overs problematic…last but not least, I had developed an uncontrollable itch. At first I blamed my gluten filled diet, and three days before I was to appear on the Montel Williams Show, I recall standing at Whole Foods grocery store and deciding then and there that I needed to be gluten free. I had been feeling so terrible, I really had to dig deep to rethink how I was taking care of myself.

So I started buying rice cakes. I bought all these wonderful flours: tapioca and buckwheat and others. I made the cookies I craved with the new ingredients, and (although they were a little drier), the new cookies… and my new diet… were just fine. I started feeling better, less itchy, less puffy.

But my energy still wasn’t right, and I had a pressure in my chest that made it hard to sleep. My chiropractor would touch my neck in a certain place, and I’d cough every time. Having a past history as a massage therapist, I knew my body was trying to tell me something.

But I was having trouble getting doctors to listen. Some of them mentioned hormones. One doctor started a conversation with, “I know you’re in the media, and you’re used to having a lot of attention, but…” I actually walked out of his office.

When I sat down with the fifth doctor, I said, “Pardon me… I don’t want to seem overly pushy or stubborn or anything, but I want to have a full set of blood tests, and I’m not going to leave your office until you give me a complete chest x-ray.”

I’m not sure if she agreed with me, but she said she could tell I was very serious. “I feel there’s something in my chest,” I said. And I had to find out what it was despite her additional prescription of Nexium for acid reflux (just in case).

The diagnosis was stage 2 Non Hodgkin’s Lymphoma —a form of lymphatic cancer that is thankfully often curable with chemotherapy (and radiation). What I had felt in my chest was a quite a few tumors and one about the size of a banana. When the doctor called, she said, “Thank God you were persistent.”

What is the lesson I learned here?

It took a few months for me to ask this question, and the answer didn’t come immediately. A little time and distance has given me the ability to think about what this diagnosis told me.

1. I realized that I was going too fast, that I needed to make some changes in my life. I was trying to rush through treatment, and I had to rest. I took a step back one day when I realized that I looked forward to my PET scan because I’d have the opportunity to take a 90-minute nap. This was really an eye opener, and I had to train myself to slow down.
2. I recognized that I needed to ask for help. I never ask for help… Rarely do I say to a friend, “Oh, please come with me.” But during treatment, I asked 14 of my best girlfriends to be my cancer buddies, and all of them are dear to my heart because they were there for me when I needed them most.
3. I understood the power of persistence. If I had listened to the first doctor, or had given up after the third, my situation might have gotten a lot worse before it got better. Thus, even though my persistence was sometimes frustrating, I listened to what my body was telling me and used my voice to tell others.

I hope you can take my lessons and apply them to your own lives, to learn how to slow down, ask for help and speak up. You alone have the power to make your life what you want it to be, and I wish you all the strength to do so.

When you’re facing a harsh disease, use every tool at your disposal.

Cancer brings a hefty load of communication. Set up a support community and online journal at www.CaringBridge.org or www.CarePages.com. Each lets you post news updates 24/7, when you feel like it – even from inside my hospital, which had wireless! It saved hundreds of phone calls, hours of emails. Plus, web visitors wrote expressions of support in my “guestbook,” which were heartening. (They’re all captured in the book I mentioned yesterday.)

Find a community of your peers. Google your disease plus “support,” for instance “kidney cancer support”. For less common cancers, www.acor.org is best.

The Internet has truckloads of garbage; learn how to filter it and find the gold. The best way to do that is, again, through your peers, who rapidly debunk the junk.

Take care of the caregiver. Get relief for the people at home who give so much. Arrange some days off, with someone else covering; if neighbors bring dinner, accept it. Your caregivers might benefit from a support group of their peers; they may be experiencing loss, too: loss of their dreams, fear of losing their future, and more. Caregivers should be straight about their emotions, too, same as you.

Learn to advocate for yourself. Expect respect from doctors and nurses, and get second opinions whenever you want. If a doctor suggests you’d be better off not asking so many questions, get a different doctor.

You can learn a lot from the free e-book E-Patients: How They Can Help Us Heal Healthcare (PDF, wiki ). I didn’t read it until my adventure was mostly over, yet it took my breath away.

E-patients are empowered, engaged, equipped and enabled. When I got my cancer diagnosis, I became one fast – and I’d never heard the term. You can be one too.

So ends my list of things I wish I’d known from the outset. How about you? Does any of this help? What did I miss, that’s helped you?

———

A parting thought:

I had no preparation at all – zero, zippo – for the life-threatening adventure I entered 19 months ago.  It seems like a lifetime ago; in a sense, it was.

As positive and activist as my perspective was, please be aware, I knew all along that I really might die soon. In a sense, it was like heading down a big “flume” ride at an amusement park, with no certain control over what was going to happen.  Yet I knew, even if I was going to die, I could still choose to be fully alive during the whole process.

That might seem odd, but think about this: If I’d clenched my teeth and fists, it wouldn’t have helped my cause at all, and might well have taken me out of the fight, mentally.

In a couple of posts here I’ve mentioned that the only question worth asking is, “What can I do that would make any difference?” My hope for each of you is that when a crisis arises in life, you’ll have the presence of mind to fully participate in your care.

Blessings on you and yours.

After a simple shoulder x-ray on January 2, 2007, I learned out of nowhere that something else had shown up in my lung. Ten days later we knew what it was: Stage IV kidney cancer that had spread throughout both lungs.

Suffice it to say that my view of life changed very rapidly. I googled my butt off, but the best information didn’t come from top-ranked medical sites – it came from a community of my peers: people with the same cancer as me, on www.ACOR.org.

In this series I’ll briefly cover the seven topics I wish someone had told me at the outset:

1. Cancer is no longer a death sentence.
2. Understanding the statistics you read
3. Creating a support community of your family and friends
4. Online resources – medical information and social resources
5. The importance of your attitude and feelings
6. Taking care of the caregiver, too
7. Advocating for your own care

Now that it’s mostly all over (I’m well again), #7 seems like the top-level lesson. But when I got the news, #1 and #2 were what I needed to hear first. That’s what I’ll write about next.

Choices we make with our children can strongly influence their odds of getting cancer for the rest of their lives. Food, Nutrition, Physical Activity, and the Prevention of Cancer: A Global Perspective, released in November 2007, is comprehensive analysis of over 7000 different scientific studies.

Based on these, the expert panel makes 8 core recommendations (and two special recommendations) for cancer prevention. Among other things, this is the first major report to recommend breastfeeding for preventing cancer in both mothers and their babies. The potential benefit from following all of these recommendations is huge (preventing as many as 1/3 of all cancers), but for many families they may feel overwhelming. Knowing the targets, though, may help to make some steps in the right direction. The report includes recommendations for all of us, but I will focus here on how their recommendations apply to children:

1) Get lean and stay lean.  Aim for a body mass index (BMI) towards the lower end of the normal range throughout childhood and adolescence (and maintain this as an adult). This may be one of the most important ways to prevent cancer later in life. Excess fat increases levels of circulating hormones linked to cancer, and makes it more likely that cells undergo abnormal growth.

2)  Get moving. Aim for 60 minutes or more of moderate activity, or 30 minutes or more of vigorous activity, every day. And limit sedentary habits such as watching television – especially where there is child-targeted marketing of junk food or sugary drinks.

3) Don’t think calories.  Think calorie density.  Calorie density is the number of calories per a certain weight of food (usually 100 grams). Watch out for calorie dense foods! Feed kids ‘fast foods’ sparingly, if at all. (By ‘fast foods’ they do not mean foods that are convenient, or ordered at chain restaurants, but foods that are high calorie density, eaten in large portions, and that easily become large parts of the diet — such as burgers, fried chicken pieces, French fries, shakes, or sodas. Avoid sugary drinks, and choose calorie-dense foods sparingly. Calorie-dense foods are those with 225 calories or more per 100 gm. The target is to have the diet average about 125 calories per 100 gm, with some foods lower and some foods higher than the average. Per 100 grams, fruits and vegetables usually have 10 to 100 calories; cereals and legumes between 60 and 150, and breads, lean meats, fish, and poultry between 100 and 225 calories.

4) Plant foods rock! — mostly. Kids should get at least 5 servings a day of fruits and non-starchy vegetables (more servings would be even more protective). Include whole grains or legumes at every meal (while limiting white rice or things made from white flour, such as bread, pasta, pizza, cakes, pastries, cookies or biscuits). Between the fruits and vegetables and the whole grains, most  of the foods that children eat should be of plant origin.

5) Animal foods with caution. For those kids who do eat red meat, they should aim for less than 18 ounces a week.  (Note: From my perspective, the issue with red meat is mostly the hormones found in conventional beef. Grass fed organic beef is far preferable.) Poultry or fish could be good options instead. It’s also best to minimize or avoid processed meats – especially those treated with nitrates, nitrites or other chemical preservatives. This would include many brands of ham, bacon, pastrami, salami, sausages, and hot dogs, as well as some hamburgers. The panel did not recommend reducing dairy, eggs, fish, or poultry for cancer prevention.

6) No alcohol for kids. Kids should not be exposed to alcohol, even before they are born. For cancer prevention, alcoholic drinks should be avoided entirely by children and by pregnant women. In addition, they recommend limiting alcoholic drinks to two per day for adult men, and one per day for non-pregnant adult women.

7) Manage molds and salt. Preservation, processing, and food preparation makes a difference. Limit salty foods, and processed foods with added salt. No one should get more than 2400 mg a day of sodium. (Kids shouldn’t get more than 1500 mg of sodium a day before age three, 1900 mg a day before age eight, or 2200 mg a day before age thirteen.) Don’t eat moldy foods made from grains or legumes, such as bread or peanut butter. Suspect hidden molds if these foods have been stored too long at room temperature.

8) Dietary Supplements. Aim to meet a child’s nutrition needs from real food. Except for Vitamin D supplements for exclusively breastfed babies, supplements have not been linked to cancer prevention in kids. (I recommend a multivitamin safety net for other purposes.)

Special Recommendation 1 – Breastfeeding. Aim to breastfeed exclusively for six months, and to continue breastfeeding as other foods are introduced. This has been shown to reduce the lifetime cancer risk for both the baby and for the mother.

Special Recommendation 2 – Cancer Survivors. The above core recommendations are all the more important for kids (and adults) who are cancer survivors. The report recommends that survivors receive the support of a trained nutrition professional to help them meet these goals for the future.

World Cancer Research Fund / American Institute for Cancer Research. Food, Nutrition, Physical Activity, and the Prevention of Cancer: a Global Perspective. Washington DC: AICR, 2007

Together, more than 400 brave parents have given us an invaluable treasure: they have shared with us the painful, intimate wisdom they learned going though a devastating personal journey. Learning that your child is terminally ill from cancer is a crushing blow. Treatments have failed; hopes have withered. And you are faced with a terrible decision: should you tell your child what you have learned? Or should you try to protect your child from the bad news.

Many of us who have worked with dying children believe it’s usually best to be honest with the kids. Research suggests that most children benefit from this conversation. Many of them will respond that they already knew, were glad to be able to talk about it, and had specific ideas of what they wanted to do to leave a legacy. But parents may understand their children better than doctors and medical researchers. And what is it like for parents to tell their children that they are likely to die?

A nurse from Sweden, named Ulrika Kreicbergs, decided to find out. Along with her colleagues, she attempted to contact all of the parents in Sweden who had lost a child to cancer between 1992 and 1997. Among 561 eligible parents, 449 agreed to answer an anonymous questionnaire about their child’s death. The questions were simple and profound. “Did you talk about death with your child at any time?” (yes or no). Two thirds of the families (and thus the healthcare teams) never talked with the children about death. The children were never told.

Those parents who didn’t talk with their children were asked, “Do you wish that you had?. (yes or no). Those that did have the conversation were asked, ‘Do you wish you had not?’ (yes or no). All of the parents were asked, ‘When do you think your child realized that he or she was going to die?’ (responses ranged from ‘never realized,’ to ‘three or four years before the child’s death’). A series of questions also assessed whether the parents were now anxious or depressed. The compelling results, gems from these courageous, generous parents, were published in the September 16, 2004 New England Journal of Medicine.

None – not even one – of the parents who talked about death with their child regretted having done so; in stark contrast, almost one third of the parents who didn’t have this conversation now regret their choice. Regret is especially strong among those who believe that their child had become aware that he or she was going to die. Mothers were more likely to express later regret at not having talked than were fathers. Parents who didn’t talk with their children are now much more likely to be depressed and/or have symptoms of anxiety.

Even though two thirds of the children were never informed of their impending deaths, just over half of the parents (54 percent) believed that their children were aware of the situation. About 22 percent of parents believed their child sensed the truth sometime in the last week of life. They thought another 11 percent sensed it in the last two to four weeks. And 12 percent of parents believe their children knew the end was coming for one to three months before the end. Another 9 percent of parents believe that their children lived with the knowledge they were going to die for four months or more. I suspect that many more kids knew the truth than either doctors or parents noticed. I’ve talked with dying children who were concerned about protecting their parents, and who had become isolated, alone with their knowledge, trying to be strong. Talking about truth opens the door for everyone to comfort each other. For the child, their inner world (awareness of death) and outer world (what family and healthcare workers are saying) come together. I’m not surprised that research shows that honest, comforting conversation help most children.

But the gift of this Swedish nurse, her colleagues, and these hundreds of parents is the hard-earned wisdom that no parent regretted talking with a dying child about death. And nearly one third of those that didn’t talk with their child now wish that the moment for a heart-to-heart talk hadn’t so irreversibly passed them by in silence or make-believe. Thanks for sharing what you learned.

Pediatricians who treat cancer are poised to petition the World Health Organization to add leukemia medicines for children to the WHO essential drugs list, according to a February 16, 2004 report to the Agence de Presse Medicale. If the WHO does this, it could make a huge change for many families around the world.

This would mean that certain chemotherapy medicines would be available at a selectively lower cost in developing nations. The medicines in question are mostly older, proven, generic medications, not the brand new ones that recently required major investments from drug companies. And what a difference this could make!

In the developed world we now cure about 75 percent of leukemia in children. But this great success is not shared in the developing world.

Currently, about 80 percent of the world’s children with cancer still do not get treatment. Without treatment, leukemia is fatal. I applaud the International  Society for Pediatric Oncology for taking steps to make this inexpensive treatment available to suffering children everywhere.

In a Herculean effort to draw attention to breast cancer, a group of women climbers, including several breast cancer survivors, reached the summit of Mt. Kilimanjaro this summer.  Through their climb they also helped to raise money for breast cancer research. 

While you may not be “up for” climbing a mountain, there are many other things you can do to help stop breast cancer.  A score of companies are making contributions to breast cancer research during the month of October.

You can help the cause by sipping pink grapefruit tea, or by adding organic olive oil to your pantry.

Until Dec. 31, in the United States you can make a difference by purchasing the Breast Cancer Research postage stamp. It was issued in July 1998 and to date, the stamp has raised nearly $33 million for breast cancer research.

You can also remind your friends to practices monthly breast self-exams  — especially pregnant and nursing moms.  Breast cancer is the most common cancer in pregnant and postpartum women– it occurs in about 1 in 3,000 pregnancies — and is often undetected due to breast changes during pregnancy and lactation.   I believe it is also missed because many women turn their attention toward their developing child.

Please join me in fighting breast cancer – you may not be able to climb Kilimanjaro, but you certainly can take good care of yourself and remind your friends to do the same.

Tremendous strides have been made in treating children with cancer. I remember the time when most children with cancer died from their illness — now most live. But we must not ignore those who are still dying.

A poignant report in the February 3rd, 2000 issue of The New England Journal of Medicine found that even at a world-renowned cancer center, 89% of the children experienced ‘a lot’ or ‘a great deal’ of suffering during their last month of life. According to the report, this suffering was from symptoms that could be relieved by simple treatments. When it’s clear that these children won’ t be cured, they get less attention from their doctors.

It’ s hard to watch a child die – especially when there are others needing to be cured. But perhaps it’ s these precious children, who have such a short time to live, that most deserve the brief, caring attention it would take to reduce their pain.