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Archive for December, 2008

Another blogger shares her personal top 10 of 2008.

 http://aftercancernowwhat.blogspot.com/

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(SOURCE: Journal of the National Cancer Institute, news release, Dec. 30, 2008)

TUESDAY, Dec. 30 (HealthDay News) — Women with high levels of insulin in their blood appear to be more likely to develop breast cancer than those with lower insulin levels.

And that might be the link between obesity and breast cancer, say researchers from the Albert Einstein College of Medicine in New York City. High insulin levels have already been associated with obesity.

The researchers compared insulin levels in 835 women who developed breast cancer and 816 women who did not. All women were participating in the Women’s Health Initiative study. Those whose fasting insulin levels were the highest had a 1.5 times greater risk of breast cancer than did women with the lowest fasting insulin levels, the study found.

The risk was even greater among women who were not taking hormone therapy. The study found that those women were 2.4 times more likely to have developed breast cancer if their insulin levels were high than if they were low.

The findings were published in the Dec. 30 issue of the Journal of the National Cancer Institute.

In laboratory studies, insulin has been shown to stimulate the growth of breast cells. And, being overweight or obese has been identified as a risk factor for breast cancer, according to the American Cancer Society.
“These data suggest that hyperinsulinemia [excess insulin in the blood] is an independent risk factor for breast cancer and may have a substantial role in explaining the obesity-breast cancer relationship,” the researchers wrote.

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Living Beyond Breast Cancer (LBBC) has a new free 40-page Guide to Understanding Lymphedema which covers how this chronic side effect develops, what your risks are, which signs to watch for and what to do should you develop lymphedema.
http://www.lbbc.org/

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Twitter Yuma Survivors http://www.twitter.com/yumasurvivors

This is a group of patients, survivors, caretakers, agency representatives, health care workers, community volunteers, Relay for Life coordinators, hospice workers, medical care professionals, nonprofit organizations and American Cancer Society workers. We first met as a group in October 2008 to address access to information and resources, including LOCAL resources for cancer patients and survivors, and to collaborate with local fundraising efforts.

Not everyone is that excited about using twitter yet – especially really busy people. And some of the group are not online. But we are starting where we are and we are going to use this to keep in touch, share information and resources as we develop.  http://www.twitter.com/yumasurvivors.

We are attracting some attention from outside resources, and that’s GREAT!

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candle-lightA common theme last year at the Life Beyond Cancer Retreat at Miraval was how to be vigilant but not anxious.

That was a year ago. I have been very slow to learn how to do this gracefully. I thought it was a balancing act, but I think I was mistaken.

As Sarah Weddington says, cancer cells are like Osama bin Laden.  “I don’t know if the cancer is dead or alive and hiding in body caves and waiting to jump out and shout ‘boo!’ I’m grateful to be NED (no evidence of disease) but I’d like to have a more permanent diagnosis.”

So we have schedules for checkups and tests and in between try to be vigilant and do our self-exams and our massage to prevent lymphedema and eat our broccoli and get our exercise but not worry too much about someone shouting “boo!”

I have been waking up at 3:00 a.m. so I began a vigil of sitting in silence in the deepest part of the night

Open in this moment. I trust in the darkness.

Waiting in trust. Growing in trust.

. . . drawn into the night’s silence

I keep vigil with eternal questions.

And only through this practice have I begun to experience that there is a difference between waiting (for test results, for the other shoe to drop, for a diagnosis, for the next checkup, for decisions to solidify) and keeping vigil.

“Anxious, fearful impatient waiting is nothing more than waiting. Waiting with purpose, patience, hope and love is vigilant waiting.”  –  from Seven Sacred Pauses by Macrina Wiederkehr)

I don’t want to just be waiting impatiently. I am trying to learn the art of holy waiting.

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From another breast cancer blog:

At the end of March of this year I had a mammogram that showed no signs of abnormal tissue. I thought I was good to go until the following year. One issue I discussed with my Doctor at that time was some itching I had on my left breast. He said it was probably just dry skin due to the cold whether. Well, I didn’t have dry skin or a rash normally associated with itching. The itching wasn’t severe it was just annoying and lasted for months. At the end of August I found a lump in that same area during a self breast exam. I have since learned that itching can be a symptom.

When I read this, I knew exactly what she meant. I had an itching sensation in the area where the tumor was found later. It isn’t the kind of itching you get from dry skin. It is a deep itching sensation, deep in the breast, around the cells that are growing out of control. Mine was intermittent, wasn’t relieved by showering or lotion, and didn’t go away until the tumor was removed. 

It is important for us to pay attention to what our bodies are telling us and to be firm and believe in ourselves and our feelings in the face of doctors that suggest that we dismiss these things as unimportant.

 

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Tonight on www.breastcancer.org
Ask-the-Expert Online Conference Tonight!:
Updates from the 2008 San Antonio Breast Cancer Symposium
Wed., December 17, 7:00-8:30pm EST Ruth Oratz, M.D., F.A.C.P. & Carol Kaplan, M.D.

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unmasked-2007_final-1I was reading this week that the average American woman absorbs five pounds of chemicals into her system each year from her cosmetics.  The European Union has banned some chemicals from cosmetics, but we are still using them in the United States.

Help get toxic chemicals out of products you use on your body and your baby. http://www.safecosmetics.org/

HORMONE-DISRUPTING COSMETICS CHEMICALS FOUND IN TEENAGE GIRLS
 

SAN FRANCISCO – Teenage girls across America are contaminated with hormone-disrupting chemicals found in cosmetics and body care products, confirms a new study released this week by the Environmental Working Group (EWG), a founding member of the Campaign for Safe Cosmetics. The report is available at http://www.ewg.org/reports/teens.

The first-of-its kind study found 16 toxic chemicals in blood and urine samples from 20 teen girls from eight states and the District of Columbia, aged 14-19, including preservatives, fragrance and antimicrobial compounds. Many of these are linked to serious health risks in lab animals, even at low-dose levels.

“Hormone-altering chemicals shouldn’t be in cosmetics, especially in products used by millions of teenage girls,” said Rebecca Sutton, Ph.D, author of the report and Staff Scientist at EWG. “Their bodies are still developing and may be especially vulnerable to risks from these exposures,” added Sutton.

The young women participating in this study were recruited from locations across the U.S. and represent diverse ethnic and cultural backgrounds. They used an average of nearly 17 personal care products per day that contain a total of 174 unique cosmetic ingredients.

“The findings of this study are further evidence that our system of regulating chemicals in cosmetics is broken. We need smarter laws at the state and federal level to keep hazardous chemicals out of personal care products,” said Lisa Archer, National Coordinator of the Campaign for Safe Cosmetics. “Teenagers are being exposed during a critical period of development to toxic chemicals in products they use every day. Being a teenager is hard enough – girls shouldn’t have to worry about their beauty products contributing to their risk of cancer or damaging their reproductive systems.”

The study provides the first data available from teens on levels of synthetic chemical musks, common fragrance ingredients that accumulate in people and act like estrogen in the body, and preservatives called parabens that also mimic estrogen.  Chemicals that act like estrogen can contribute to early puberty and an increased breast cancer risk.

The FDA does not require companies to test products or ingredients for safety before they are sold. As a result, nearly all body care products contain ingredients that have not been assessed for safety by any federal agency, and many contain chemicals linked to cancer, birth defects and endocrine disruption.

“Most parents don’t know that the eyeliner, lipstick or shampoo they allow their daughters to use probably contains at least one chemical linked to a number of serious health concerns,” said Sutton. “Teenage girls are at a particularly vulnerable age and these exposures could trigger a subtle sequence of damaging effects that leads to health problems later in life.”

Teenagers,  their parents and other consumers can consult EWG’s Skin Deep online database to learn more about unsafe chemicals in cosmetics and how to make safer choices about the products they purchase for themselves and their families. They can also visit www.SafeCosmetics.org for an overview of current laws and to join the growing movement to demand stronger government regulation and oversight of the $50 billion cosmetics industry.

http://www.safecosmetics.org/action/materials.cfm

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three

I had planned to get back to Phoenix for a couple of weeks. If I had kept my plans, I would have been there today when I got an invitation to go back to the Life Beyond Cancer Retreat at Miraval again this year! It starts in two days. I was invited to attend when there were cancellations.  I quickly checked air fare to Tucson and Phoenix, thinking if I got to Phoenix I could drive from there, but it was all too expensive, so I’m not going to go.

If I had only been in Phoenix already!  But Pinky Sparkle Twinkle would have been there with me, and what would I have done with her for four days?

I was looking at the photo album on the LBC web site from the 2007 retreat, and found myself in one of them.  That’s me in the blue jacket on a rainy morning on my way back to lunch after a morning of speakers.  My journal on last year’s retreat.me1

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mandalaFrom the moment I got my diagnosis of breast cancer until over a year later, I could not go through a day without thinking of cancer. I had a moment in the morning when I woke up before I remembered cancer, but I didn’t have any mornings without thinking of it before I got out of bed.

Even after I finished treatment, I never went through a day without thinking of cancer. I wondered if I would ever get to the point where I did not think of myself as a person with cancer and how that affected my day, my life, my work, my family, my time, my rest, my future.

Eventually, after having several check-ups and tests that came back “NED” (no evidence of disease) I reached a point between visits to the doctor that I woke up in the morning without thinking about cancer, or thinking of myself as a cancer survivor, and days that I feel well seem “normal” again. Days when I don’t feel well are another story. It’s hard to not feel well and not wonder if it is related to cancer.

So I don’t think of cancer all the time. I don’t go online to check news about cancer, or visit the online support groups and message boards.

Now that I’m working with a group of people on local resources for cancer patients and survivors, I’m back to thinking about cancer. What resources were helpful to me? Are we going to start a support group? How are my survivor friends, some who are going through treatment, feeling today?

I’m back looking at resources online, collecting links and setting up online networking tools for people who can’t forget about cancer because it has affected their lives or the lives of people that they know.

So we think about cancer some of the time. Think about it, then don’t think about it, then think about it.

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The group that got together in October to do community advocacy and resource directory for local cancer patients and survivors is waiting for the rest of us survivors to keep moving along.

We’re having an informal breakfast meeting next week at the local cafe on Main Street at 8 a.m. We’ll talk about the goals: create a directory of local resources and insert it into the state directory; recruit volunteers who will be trained by ACS to be in (the hospital/ clinic) (other place?) two or three mornings a week to answer questions and provide resource information and materials; recruit volunteers ACS will train for Reach for Recovery; help two local groups raising funds for research and treatment coordinate their efforts to continue $ for research AND keep some $ in the local community to help patients with the expense of accessing treatments and appointments out of town.  Some survivors also want to start a support group.

Since we are 2 – 2.5 hours from the front range where radiation treatment centers and other resources are located, we need to have some funds available to help folks get there, and improve the prognosis for people who otherwise might just skip treatment, or have a mastectomy instead of lumpectomy so they don’t have to have radiation, and to get to other facilities, when needed, in addition to the one the local hospital has contracted with. 

This community has raised enormous sums for Relay for Life, but none of that money stays in the community as dollars a local organization can distribute when needed to access tests, treatment and other appointments.

We have a LOT of enthusiasm in this new blended community group, so we need to keep focused and moving forward.  In the meantime, working on this has meant some of us survivors have talked to each other more often, which is functioning as the foundation for a support group, I think.

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Not Grace

Not Grace

I imagined the perfect dog . . . a substantial dog. A dog that a person could respect. A five-year-old female black lab who was housetrained, well behaved, with a mellow personality (yet a watch dog), who had lost her person and was just looking for a quiet home in the country where she could lay at someone’s feet while they worked at a desk, that would curl up for an evening of reading or tv, a dog that would only need an occasional stroll (never running! or frisbee!) and liked riding in the car without having a nervous breakdown, needing a tranquilizer, or throwing up.  I had already named this imaginary but substantial dog, Grace.

Then I actually found her online.  A five-year-old female black lab named Grace. The rescue organization across the state line in Kansas didn’t give any information on the rest of the qualities.  But they never returned my call. In the meantime, my mother encouraged me to get a puppy, and, to make a long story short, I got another “insubstantial” dog – a Malitpoo (cross between a Maltese and a Poodle).  Just like Jessica Simpson’s dog Daisy.  (Sigh. How embarrassing!)

The first few days after I got her home – along with new crate, blanket, dishes, toys, puppy training papers, and after the vet checkup, I slept on the couch with her in the crate on the floor beside me. I woke up every three to four hours all night long, put on her halter and leash, and we went outdoors no matter what. She soon got the message, and I was soon exhausted. Maybe she was, too, because she took a nap each morning and afternoon.

When I went to Arizona for a week, my mother baby-sat the dog. Mom reported that they both slept all night long without any trouble or mess. So when I got home, we did, too!

Then the puppy  got sick — really sick, and I was very upset. I couldn’t go through another sick dog already — my last poor doggy who was 17 years old was so sick for so long before I lost her that I couldn’t face it again. I was crying around, “what have I done!!!”  So there were more vet bills, but the medicine worked, and after incurring yet more vet bills, the lab reports confirmed that she was okay now — she was cured.  $$$$$$$$.  $$$$$$$$.

pinky-001Now we’ve gotten used to each other and we’re best buddies.  She isn’t the perfect dog. Her hair is growing out and it looks like this. She will never have a substantial stature or command respect, especially if she always has a bad hair day.  She likes to unroll the toilet paper, she takes every shoe left on the floor into her crate, and her name isn’t Grace. It didn’t suit her.  So her name is Pinky Sparkle Twinkle.  (All my other pets were named after Greek and Egyptian gods and goddesses and radical personalities from the 60s.)

But she doesn’t have to have a long run outdoors every day and she can play fetch in the house with her tiny toys. She likes to lay on the desk or in my lap while I work. She’s trained to her puppy pads so we don’t have to go outdoors if it’s really cold and snowing, like it was the last couple of days. And she likes to ride in the car.

Now I know why my mom encouraged me to get her. She makes me laugh – and that churns up the endorphins. I have something to think about and take care of besides myself. She’s a little demanding, and that’s okay because I have to give in some times and do what she wants even though we pretend I’m still the boss of both of us. She likes to play, so I have to play, too, sometimes, and it’s a long time since I played. She likes to cuddle, and I haven’t had anything to cuddle for a while.  Having her around is more fun than eating fresh broccoli. This may be why “they say” (as Mom said) that people who live alone “do better” when they have a pet.

So we’re committed now.

And some day we may get a call from Grace, and we’ll have room for her, too.

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Since I accidentally discovered the Mayo Clinic report that breast cancer survivors with asthma have a two-fold risk of mets to the lung, I have been to Arizona and discovered that my asthma didn’t bother me as much while I was there. I didn’t, though, go to Mayo’s to followup.  Why? My insurance company said I hadn’t met the deductible yet this year and I would have to pay for a pulmonologist visit and pulmonary function tests out of my pocket.

Haven’t met my deductible yet this year?! A year of visits with specialists, biopsies, mammograms, ultrasound tests, ob-gyn visits and tests, genetic testing, and all that medicine.  I found out none of my co-pays or payments for those things counted toward my deductible OR my “out of pocket maximum” this year.

Other reasons I didn’t have the testing yet: I changed insurance companies before the end of the year, and my tumor marker tests were good and even in the range for a person who has never smoked, even though I did until about 8 years ago. And my new primary physician was gone all November having surgery.

When I was in Arizona I felt like I could breathe WELL and DEEPLY, and didn’t need to use the inhaler I took along.

I got a flu shot the day after flying home in a sardine can and then was sick for 10 days with a cold and sinus infection.  Being back indoors with a forced air furnace was a drag on my spirits as well as my asthma.  Then it was Thanksgiving and I had company, and now here we are in December and I haven’t gone back to Arizona or talked to the doctors again about the asthma connection, but I started taking my steroid inhaler twice a day.

The reports say that breast cancer patients/ survivors who use steroid inhalers to keep their asthma under control have a better outcome.

My next three-month checkup is in early January.  I’m determined to follow through with this to keep this from being an issue. I don’t want lung mets because I couldn’t control asthma.

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