From a Daughter’s Point of View

I talked to my daughter about my last blog post. Did she think parents should tell their children when they are diagnosed with cancer, or should they lie and spare their kids a terrible and painful truth?

Her reaction was viseral and immediate. She said she thought it was wrong to lie to children about a parent’s cancer diagnosis. She said she would have been very angry if she’d found out later that she’d not been told the truth, even though she was only 10 years old at the time. My daughter said she knew from the vibes in the house and how her father was acting that something was very wrong with me. She said if we’d have chosen not to tell her the truth and if she’d found out later, she would have been angry at the dishonesty, would have resented not being told the truth and would have had difficulty trusting us thereafter. She felt the ONLY right thing to do is to tell a child the truth about a parent’s cancer diagnosis.

The CR magazine article Losing a Parent quotes Paula K. Rauch, a child psychiatrist and co-author of the book Raising an Emotionally Healthy Child When a Parent is Sick “If a child is kept in the dark about the severity of a parent’s illness, they can feel like they were betrayed or lied to and may even feel unloved,” she says. “That can leave them with problems trusting the surviving parent or the other adults in their lives.” From what my daughter said me, this would have been true for her.

I wonder too now if knowing the truth at least gave her some sense of control. She could do something about it; she could make me cards and write me letters, pray for me, talk to her friends about what was happening, seek support. She knew what the problem was so she was able process it. Maybe for kids it’s the same as it is for us adults- sometimes the limbo of the unknown is worse than the hard truth.

I have lost appendiceal cancer friends who have been in hospice and who have had young children, so I asked my daughter if the honesty should extend to telling a child that a parent was going to die. She hesitated at that. She said she didn’t think she could deal with knowing a parent was going to die and living with that daily reality as a child, but that she would want to be prepared. She would want to know that it was possible her parent might die, so that when it happened it wouldn’t be a complete shock, that some part of her might have been ready. She could have at least gotten used to the idea, the possibilty.

Talking With Your Children

CR Magazine is a new magazine published by the American Association for Cancer Research. The magazine seeks to connect groups of those affected by cancer in a collaborative effort. The CR stands for Collaboration->Results. It will take all of us affected by cancer; patients, advocates, caregivers, healthcare providers and researchers working together in a collaborative effort to one day see to see results, to see cancer defeated. I believe in the premise. I subscribe to and love the magazine.

The winter issue that was recently published had a great article: Talking With Your Children . The article advocates having an open dialogue with your kids about your cancer. I agree whole-heartedly.

Talking to my kids about my cancer diagnosis was very difficult. We all want to protect our kids from pain, we want to provide them with a stable and nurturing environment, we want for them to feel safe and secure. Telling our kids that we have a potentially life-threatening illness is very difficult. It causes them pain, it disrupts their sense of safety, it makes them feel insecure. When we tell our kids we have cancer, we cause them to have feelings that we as parents have always tried to protect them from. Its hard.

My own kids were 10 and 11 when I had to tell them I had cancer. I did keep the information age-appropriate, and I was as honest as I could be. I told them I had cancer of my appendix, that is was serious and that I was going to get the best treatment I could find for my disease. I didn’t tell them I’d been told I had a very poor prognosis and had very limited odds of surviving even three years. They didn’t need to know that at the time. But I didn’t promise them I wouldn’t die, either. I just told them I was going to do my best to live a long time; that was true.

I went to their school to talk to both of their teachers to let them know I had a serious cancer, would have to travel across the country for surgery and that I would be gone for several weeks. I asked the school to please let me know if my children developed any problems.

I let my kids know they could talk to me any time about how they felt or about any fears they had. I also told them if they wanted someone else to talk to they could talk to their dad or grandmother. I told them they could also talk to their teachers, that their teachers knew. I offered to take them to a counselor if they felt they needed that.

After I told them, one of my daughters woke up several times sobbing in the middle of the night. She’d climb into my bed telling me she had dreamed that I’d died. I couldn’t tell her I wouldn’t die. I instead told her to look at me, that I was doing well, and I was getting very good care. That seemed to be enough at the time.

It was tough.

The one good thing was that my cancer was rare. My kids went to school and told all of their friends their mom had cancer. Over the lunch table they heard many stories from children who had lost grandparents, aunts and uncles to cancer. They came home uplifted, though…not one friend had lost a family member to appendix cancer, only to brain and breast and colon cancers. None of their friends had even heard of anyone dying of appendix cancer!

I’ve communicated with other appendiceal cancer patients who have only told their children that their mother had a “really bad tummy ache” and needed to see a special doctor. I kind of wonder if the kids didn’t already know their mothers had cancer…I know in my own house the phone rang off the hook at first, the kids saw their dad crying for the first time, flowers came to the house from many people, there were messages on the answering machine for my husband “We are so sorry”. I can’t imagine with all of the cancer talk at my house that they wouldn’t have somehow overheard the word and known that their mother had cancer. And if my kids had thought they weren’t supposed to know, they wouldn’t have had the opportunity to talk to my husband and I as they did about my diagnosis, they’d have lost that opportunity for support. I wonder sometimes if the kids who were spared the truth developed a terrible fear of stomach aches for the rest of their childhood?

There’s a link to another article, Losing a Parent: How do you prepare kids for a parent’s death? at the main article’s side bar. I’ve known several appendix cancer patients who have died leaving young children behind. One parent was a hospice patient, and the nurse helped the kids and the parent work together to make a “Memory Box” of mementos for the child to treasure. I’ve communicated with several parents of small children who have lost their battle, some have left memory boxes, one wrote her child a letter he can read when he is older. I know of a family with 5 children who lost their father to a house fire…the mother found a non-profit program (Rainbows)that helped children who had lost a parent. I know those kids now, years later, and they are doing well.

I know our cancer diagnoses are difficult for our kids, but I also know now that in the end the experience helps shape their character. My kids now have great empathy for those affected by cancer. They do speeches at school advocating cancer research and telling our story, they have friends over to make appendix cancer ribbons to distribute.

I’ve learned that kids are resilient. They are stronger than we know.

AACR Prevention Conference Wrap-Up

For the past several days I’ve been posting what I learned at the recent Frontiers in Cancer Prevention conference, I learned so much there. I am very grateful for the opportunities the American Association for Cancer Research has given me via the Scientist-Survivor Program.

I attended many other prevention sessions at the conference. Among them chemoprevention…medications that may one day be given to prevent cancer in high risk individuals. Another session was dedicated to inflammation’s role in cancer; there is an inflammation-cancer connection also.

While we all want a pill or food or chemical that will be a magic bullet in preventing or curing cancer, odds are there won’t ever be any one thing that cures or protects against all cancers. Cancer is actually 200 different diseases and even those 200 cancers can be different from each other. Biologically, even two of the same types of cancer, such as breast or colon cancer, can be very different from each other genetically or epigenetically. I get emails often from people asking me what I think of the latest chemical compound, mushroom or vitamin…will it cure their cancer, maybe? Is it the “magic bullet”? Probably not. If it sounds too good to be true, it probably is.

Seventy percent of all cancers can be prevented. We can prevent cancer, and maybe prevent a cancer recurrence, by engaging in a healthy life style. We can avoid exposure to cigarette smoke (which has been implicated in more than 10 different types of cancer including pancreatic cancer, not just lung cancer). We can avoid excess alcohol consumption. We can avoid asbestos or other environmental toxins. We can eat a healthy diet with lots of phytochemicals from fruits and veggies. We can exercise. We can be vaccinated or have our children vaccinated against diseases like hepatitis and HPV to lower risk of liver and cervical cancer. We can spend some time out in the sun and/or take vitamin D supplements. There’s lots we can do….even though it might take some time and effort on our parts. We can find weapons to use in our personal fight against cancer.

I for one am making changes. I think living a healthier lifestyle just takes working at it for awhile until it become habit. I did quit smoking years ago, but gained weight in the process that I never lost; my BMI is now greater than 25. I don’t exercise a lot as I spend too much time in front of my computer. I eat too much red meat, too few veggies and too little fruit.

I want to live a healthier lifestyle to prevent cancer, but I also love to backpack and distance bike. I’ve become a backpacker since my cancer diagnosis. Backpackers are obsessed with weight and size. We want to carry less weight….I use a postal scale to measure ounces to try to shave weight from my backpacking gear (after struggling to hike mountains with 40 lbs. in my pack a couple of years ago). I have a tiny stove that with weighs 2 ounces, together with fuel it weighs 4 ounces. I have a 2 lb. tent (also a bigger 4.5 lb. tent I like much better). I want to reduce the weight of my pack; 25 lbs. instead of 40 would be ideal though I couldn’t bring the good stuff at that weight. Then I got to thinking; I am about 25 lbs. overweight. I’m carrying an extra 25 lbs. all of the time. Maybe if I get skinny and fit I can bring better stuff when I backpack!!! Hunks of cheese instead of Ramen noodles! The big comfy 4 lb. tent instead of the 2 lb. cramped “tunnel” tent. The warmer sleeping bag.

I also like to distance bike. I have a 1993 great Trek bicycle that has an aluminum frame and titanium wheels. A newer and lighter carbon fiber bike weighing about 10 lbs. less would be great for biking…but cost about $1500. Got to thinking, I could lose the weight and ride a lot lighter for free.

If I lost the weight and got in shape, I’d feel better about myself and could wear my cute skinny clothes again, use better stuff backpacking, be faster on my bike, get to experience the natural endorphins….AND cut my cancer risk!

Hmmmm…lots of benefits to a healthier lifestyle. Look better, feel better, do more, have more energy, less cancer risk.

Since the conference I’ve signed up at my local YMCA and am working out 6 days a week now for at least 30minutes a day. I joined a running program at the Y (I’ve NEVER run before), so have a running group and a running coach now. I run three days a week, one day a week with a group that keeps me honest and holds me accountable. I’m told I’ll make lots of friends in the group. I bought the good running shoes and am already signed up for a 5K run in April, so have some motivation to stick with it. I’m starting a Tai Chi class with a friend this week. The cost for all of this is less than I used to spend on cigarettes when I smoked, and the time is less than the time I used to spend watching TV years ago. And I stand to benefit greatly.

I’m also eating better…I am eating less red meat, more fruits and veggies and trying to drink green tea once a day. I think green tea is kind of tasteless, (I do espresso coffee regularly), so I use 4 bags of green tea to a mug once a day…with 4tea bags it has some punch/taste! It’s said that 3-4 cups of green tea has great health benefits…with 4 tea bags to a mug, I get all of the benefit in just one cup! I am also now taking Vitamin D3 supplements as I live near Chicago where winters are long and dark.

So, I’m making changes…in part for cancer prevention, but in greater part as a quality of life endeavor. If I reach my goal of being skinny and in shape by April ` 1st, I’ll look and feel better. I’ll be in good enough shape to have more fun biking and backpacking….plus will enjoy the bonus of making new friends in my running and wilderness clubs. Definitely worth the effort.

American Association for Cancer Research: Frontiers in Cancer Prevention Post #5: The Human Papillomavirus (HPV)

The Human Papillomavirus Virus (HPV)

The human papillomavirus (HPV) is a sexually transmitted virus. It can be transmitted via vaginal, anal or oral sex. There are several types of HPV viruses.

HPV virus infection causes no symptoms, so those infected with the virus may be unaware they are infected. Up to 80% of those sexually active become infected with the virus, even those with few partners. Most cases clear spontaneously, but those that do not pose a cancer risk.

The human papillomavirus is known for its association with cervical cancer, but HPV infection also increases risk for cancers of the vagina, anus, penis, mouth and oral cavity. HPV viral infection is also responsible for venereal warts.

There is now a vaccination that offers protection against the HPV virus. While it does not offer protection against all strains of the HPV virus, it protects against HPV strains responsible for 70% of cases of cervical cancer and 90% of the HPV viruses that cause genital warts. The vaccine does not protect against all strains of the HPV virus, so those who receive the vaccine still need to have routine PAP smears. The vaccine does not hasten clearance of HPV infection once one is infected.

There are some issues remaining to be resolved in regards to the vaccine. The vaccination is currently rather expensive, approximately $360 for the series of three vaccines over a 6 month period. Right now, The FDA has approved the vaccine, Gardasil, for girls and women aged 9-26. It is best given to women before they become sexually active. Ongoing long term studies are in progress to learn how long the vaccine is effective. Research is also ongoing as to whether the vaccine is also effective in boys and men, who can acquire and transmit the virus, and who if infected may be at risk for anal and penile cancers.

Future advances hope to make the vaccine more affordable. It is also hoped that in the future the vaccine will require only a single administration instead of the series of three vaccinations over several months now required.

AACR Frontiers in Cancer Prevention Research Post #4 Diet and Exercise


There were several presentations about the effects of diet and exercise at the Prevention meeting.

Several foods and dietary habits are associated with decreased cancer risk. Diets high in fruits and vegetables, whole grains, healthy fats (like olive and canola oil), green tea and red wine (one glass a day) are associated with a decreased cancer risk. Research is also being done to investigate the possible cancer-fighting properties of curcumin (found in the popular Indian curry spice turmeric). Reservatrol, a phytochemical found in the skin of red grapes, is also being investigated for anti-cancer properties. Natural compounds in the vegetables broccoli, cauliflower, cabbage, kale, brussel sprouts are believed to boost the body’s ability to repair damaged DNA and possibly prevent cells from turning cancerous.

Phytocehmicals are chemical compounds in fruits and vegetables that are felt to offer the protective cancer benefit. These chemicals give fruits and vegetables their color and flavor. It is believed these chemicals evolved as natural protection for plants against bacteria, fungi, viruses, and damage to cell structures, especially DNA, from the environment.

There may come a time when these phytochemicals are mass produced and sold as supplements in drug stores…but why try to duplicate what nature has already provided? The perfect solution may be to eat an orange….or some broccoli or some grapes. I read once that there are 200 different phytochemicals in a single orange. It could be the amounts and combinations of these phytochemicals chemicals in these foods accounts for their health benefit. While nutrients obtained from healthful foods protect against cancer, nutrients obtained from over-the-counter supplements are not always protective. Beta carotene supplements are now associated with increased lung cancer risk in smokers, and too much folate and vitamin B12 may increase the risk of methylation and the epigenetic silencing of genes. It seems the best way to obtain many of the helpful compounds is directly from the healthy foods.

On the flip side, some dietary habits encourage cancer….diets high in red meat and alcohol, for instance, encourage the formation of some kinds of cancer.

The cancer benefit of exercise was also discussed at the meeting. As it turns out even for those who are overweight there is a cancer prevention benefit from exercise. Cancer risk is decreased 30-40% in those who exercise vigorously for four hours a week and decreases 20% for those who exercise moderately for 5 hours a week. There is an exercise benefit even for those who are overweight.