As a breast cancer survivor and retired patent attorney I am attuned to any resources addressing the legal face of cancer. Treatment is not the only battle with which cancer patients and survivors struggle. Employment issues, insurance companies, and how to decipher the intricacies of managed care loom large for this patient population. I personally have faced some of these problems, particularly in trying to obtain individual insurance, a nightmare of gargantuan proportions.
Enter the Cancer Legal Resource Center (CLRC), a national, joint organization of the Disabilities Rights Legal Center and Loyola Law School Los Angeles. Started in 1997, this program provides patients with legal information and resources on cancer-related issues. Examples of issues tackled head-on by the CLRC include assistance with employment, getting and keeping insurance, access to government benefits, estate planning, and consumer issues.
The CLRC provides not only educational seminars and conferences across the country, but also one-on-one toll-free telephone discussions on resources and information (1-866-THE-CLRC ). Or you can visit them in cyberspace at CancerLegalResourceCenter.org, or email them at CLRC@LLS.edu. Best of all, these services are free to individuals coping with cancer: patients, survivors, caregivers, healthcare professionals, friends and loved ones.
One shouldn’t have to hire a lawyer to discern all the ins and outs of employment rights and other legal mazes. What a concept. What a blessing.
Merry Christmas, Seasons Greetings and a healthful New Year,
P.S. On my Resources page I list some other Legal Assistance sites to help people through the maze of employment discrimination based on disabilities such as those brought on by cancer. Further, you can consult the “I Can Cope” resource of the American Cancer Society to receive additional support and resources.
If I weren’t a breast cancer survivor, my friends and acquaintances would compliment me on losing weight (unless they were insecure or envious, but that’s a story for another day). People would ask, “Have you lost weight? You look great!” It would be a natural response in our weight-obsessed U.S. society. But what about a breast cancer survivor who has long since undergone chemo (and probably gained weight from it) and is just now losing that weight?
I’m in that category. Almost eight years out from my second diagnosis, I decided to lose some pounds gained over that period, not only from chemo, but sloppy living, binge eating and social grazing. Even though I had kept up my exercise regimen all that time, I couldn’t control the compulsive dip of my hand into boxes of goodies. My recent conscious effort to halt the addictive behavior was rewarded by a loss of 18 pounds. This is the first time I have seriously shed weight since I first got cancer in 1996. It seemed the right thing to do given that cancer patients reduce their risk of recurrence by maintaining a normal weight. Lymphedema provides another reason to watch my weight. Indeed, my swollen left arm looks almost normal and my new compression sleeve doesn’t chafe since I reduced my carbon footprint.
That is why I was so surprised by two women’s responses to my weight loss–people who knew I had had cancer. They first asked, “Did you lose weight?” A simple question but their non-verbal gestures spoke volumes about its meaning. An awkward pause ensued as I considered my response. Finally I said, “Yes.” This simple answer made them counter with another grilling question: “Intentionally?” or “That’s a good thing, right?”Accompanied by a tilted head or narrowed eyes.
At first I was hurt. Why wouldn’t I have told them if my cancer had returned? Of course I would tell them. They not only attend my church, but they’re strong prayer warriors. Wouldn’t I want every praying person to root for me if I were wasting away? I did assure them it was a good thing. But then I thought, Why are only cancer survivors subjected to these questions? For everyone else the response would be totally positive.
But I quickly got over it. As with other comments made by people who don’t understand issues faced by long-term cancer survivors, I learn to forgive and forget. I learn empathy for these curious observers, one of whom lost her husband to a fast-growing cancer. How could she not be concerned?
What I will always remember, though, was the comment my college-age son made when he came home on break. As I was walking up to him and his fiancee to give them a hug, she asked him, “Didn’t your Mom lose weight?” He replied, “Yeah, she sure did. She’s a hot momma!” Now that I like. Especially since I’m old enough (barely) to be my son’s grandma. And I’m embracing that image whenever anyone asks me if my losing weight is a good thing. I’ll flaunt my skinny jeans with pride, not trepidation.
Now my biggest challenge is keeping that weight off, and not reverting to a habit of noshing on comfort food when tired, bored, or upset. And continuing to fit into all the new clothes I bought. Stay tuned! Meantime, I’m doing some stretches as I type.
While Thanksgiving 2010 is a mere memory now, my giving thanks for life continues. My biological clock struck midnight when I had my last child. He may not be a “change-of-life” baby, but he was close (and he did change my life). Only three when I received my first diagnosis of breast cancer. he’s now almost 19. Both he and his brother (age 23) visited us for Thanksgiving this year. We enjoyed a delicious meal prepared by my master chef husband, along with bike riding, pumpkin bread, puzzles, movies, and late-night sharing.
So what was the problem? The day they left I fell apart. I wasn’t prepared for the emotional downer when they took off at 5:20 am to head to the airport. Normally I drive my college-age son to the airport, but this year his brother dropped him off on his way to the San Francisco Bay Area where he has lived since June 2010.
After they left I slept another two hours and then dragged myself out of bed to a soggy Saturday morning. I thought, This wouldn’t have been so hard if they were bickering over video games as they sometimes used to. But they got along magnificently this visit. I tried to keep my spirits in check by scrubbing nooks and crannies and changing and washing sheets, but, alas, the ruse only worked so long. I expected our cockatiel Hitchcock to chirp when I pressed the keys of the microwave, but he had died two weeks before. No comfort from that fine feathery friend. He had an empty nest, too. By the time I dusted the last shelf in preparation for setting out holly and Advent candles, I was a wreck. And then when someone at our church the next morning asked if my sons were still here, I broke down again, this time in the middle of the second verse of “Holy is the Lord.”
I understand these emotions are normal, part of another season of life. I’m thankful that I have lived long enough to experience this emotional roller coaster, knowing that I will see my sons again right after Christmas, God willing. Nevertheless, the journey is difficult, bittersweet. Between now and Christmas I will focus on the fact that my little baby, now 6’5″ tall, the one who gave me a special will to press on despite chemo and lymphedema setbacks, is alive and thriving. Life will go on. Bring on the seasons of change; I’m not afraid!
Blessings for this special time of year,
One of the chapters in my Mourning Has Broken book addresses the subject of grief. Grief can’t be divorced from the subject of cancer.
This time of year is bittersweet for me. My wedding anniversary, my end-of-cancer-treatment anniversary, and my brother’s, my mother’s, and my birthdays are all in October. For so many years October was a month for celebration. And the ensuing month November promised family gatherings to share food and give thanks to God for His provision.
But God gives and He takes away.
My son’s best friend died Oct. 20, my Dad died on my brother’s birthday in October, and my Mom died November 16, albeit in different years. Then, just two days ago our beloved family pet cockatiel whom we’ve had for 10 of his 18 years passed on. Too many lives snuffed out in six short years. Lori Hope, author of “Help Me Live: 20 things people with cancer want you to know,” eloquently expressed to me in her blog (http://www.carepages.com/blogs/helpshurtsheals/posts/better-late-than-never-or-just-better-late?ipc=mbp): “It seems each death or anniversary is cumulative, with the sum being greater than its parts.”
When I asked my brother about this time of year, he quickly responded that autumn was his favorite season. “Why?” I asked, curious how he could ignore these months of grieving as if they were leaves fallen to the ground and promptly forgotten. He said, “I use this time of year to remember how gentle Mom and Dad were and to pass on that gentle spirit to others.” How brave! how noble! I have tried to adopt this attitude, but many times fall flat. I tell myself it’s because, unlike my brother, I’ve been scourged with cancer twice and understand grief more profoundly. Yet I know deep within that he is right: I should turn around the way in which I approach grief, whether helping others or delving into new activities.
There is good news in the midst of this onslaught of grief: The day we found our bird immobile at the bottom of his cage, my insurance agent called to tell me that my medical insurance company is reconsidering my high-risk status as a cancer patient. I have reapplied and pray that the medical underwriters will confirm this view, reducing my premium by half (a savings of almost $500 per month!). We shall see where all this goes. Psychologically it boosts my confidence in a longer life when an insurance company–cautious by definition–puts down its guard.
In the meantime, I still count my blessings, naming them one by one. Let’s see, there’s my health, my wonderful husband, my three sons, my compassionate cousins, a plethora of friends, and so on.
People with lymphedema (like me) are at increased risk for infections. Normally an acid layer on the skin’s surface protects the body by preventing germs from invading the skin. But those with lymphedema have dry and scaly skin that disrupts this acid layer. And moisture collecting in any skin folds may help bacteria to grow. Because swelling compromises the immune system, the body is less able to fend off the bacteria. When the germs do get under the skin, protein and waste products provide an ideal breeding ground, allowing an infection to develop.
Three main types of infections are associated with lymphedema: cellulitis, erysipelas, and lymphangitis. An acute infection of the skin, cellulitis is accompanied by painful swelling, redness of the skin, and heat. It frequently enters the skin through cuts, abrasions or breaks. Cellulitis may be life threatening if it spreads to vital organs.
Erysipelas affects the skin and tissues just beneath the skin. Onset is typified by fiery red swelling with raised and distinct margins in the affected area, and its rapid spread through lymph vessels, which contributes to fibrosis. Symptoms are, for example, swelling, redness, fever, headache, sometimes vomiting and chills.
Lymphangitis is often associated with cellulitis. It may spread to the blood stream causing a potentially life-threatening emergency. Symptoms include red streaks from the infected area to the armpit or groin, fever, pain, headache and enlarged lymph nodes.
If you have an infection:
Do not wait, and do not ignore any sign of an infection–seek immediate medical treatment!
Individuals at a high risk for lymphedema must remain alert to the signs of infection as these symptoms may be the first signs of the onset of lymphedema.
Antibiotics should be administered as soon as possible. Penicillin-based medications are taken either orally ( if no systemic infection is present) or by intravenous injection. Oral penicillin is administered for a minimum of 14 days, or until inflammation ends. In some patients therapy may take one or two months before symptoms go away completely. If the patient is allergic to penicillin, other antibiotics may be used to treat the infection (e.g., clindamycin or claritromycin). In severe cases, the patient may need to be hospitalized.
Lymphedema patients who have had recurrent infections should keep a two-week supply of antibiotics on hand, particularly while traveling. Other patients should keep a prescription on hand in case they do get an infection while traveling.
Stop manual lymph drainage (therapeutic massage) if acute infection and fever are present. To prevent excessive swelling during the infection, light compression should be applied, if possible.
Visit http://www.lymphedemablog.com/2010/10/29/infections-associated-with-lymphedema for more details about infection.
I’ve never had an infection of my lymphademous arm, despite some cuts and abrasions, but there is always a first time. Applying the Boy Scout motto, I try always to be prepared by knowing the signs and symptoms and taking needed precautions.
Blessings and good health,
Guest blog post by Jean Harvey-Berino, PhD, RD
I know breast cancer first-hand, because I am a survivor myself. I’m also a medical researcher and professor dedicated to teaching people how to live healthier lives, one habit at a time.
When I look at the statistics about cancer and obesity, I’m astounded:
- Obesity is credited with contributing to 41,000 new cases of all types of cancer.
- Nearly 30 percent of postmenopausal and recurrent breast cancers can be linked to excess weight.
- About 90,000 cancer deaths per year in the U.S. could be prevented with weight control.
(Source: National Cancer Institute)
The numbers are scary, but we can change them. That’s why I’ve joined forces with fellow researchers Kim Dittus, MD, PhD, and Jan Bunn, PhD, at the University of Vermont College of Medicine and Fletcher Allen Health Care, Inc., to conduct a pilot research study designed to test the effectiveness of behavioral weight loss programs among breast cancer survivors.
We will use the Vtrim Online Behavioral Weight Management Program as the intervention, a program I developed during 19 years of obesity research. Vtrim teaches people how to manage their weight by changing their eating and exercise behaviors. Changing behavior is truly the key to managing your weight. Think about it – would you rather cut chocolate out of your diet for the rest of your life, or change that pesky habit of snacking whenever you get stressed out?
So let’s start changing those numbers by changing our own lives, one survivor at a time. Here is my advice to you as you journey through your recovery.
1. “Feed Me” Triggers. Eating behaviors are learned and ingrained over time, but the good news is they can be un-learned. It takes time and practice, but becoming aware of your emotions and environment—and understanding how they influence your eating—will empower you to try a different approach. What are some of your own “feed me” triggers? Write them down or type them up. Next, brainstorm ways to manage them. Then, put them into action.
2. Bite It, Write It. The cornerstone of behavior modification is self-monitoring—a clinical term that simply means writing down the foods you eat, how much you exercise you, and noting triggers. To journal effectively be sure to record what you eat and drink immediately – you’ll avoid the forgot-it factor. Be specific and record the type and amount of food in detail (refer to food labels, product Web sites, etc.). Add up your calories after each entry to have a running total so you can be mindful of your calorie budget.
3. Read Between the Lines. Just because a food is fat-free, doesn’t mean it is calorie-free. Some fat-free versions of foods actually contain more calories than the regular full-fat variety. When lower-fat versions of foods are made, something has to replace the fat in the food. Often that replacement is sugar. Portion control still matters even if your ice cream or potato chips are fat-free.
4. Launch a Pre-emptive Strike. Make an “I’m bored” list. Write down ideas of things you can do when you are bored. Many people start grazing on snacks simply as something to do. So if you find yourself rummaging through cupboards for no apparent reason, turn to your “I’m bored” list and choose an activity to do instead.
5. Snack Smart. If you are feeling hungry, a mid-morning or mid-afternoon snack is a great way to get you by until your next meal and to avoid going too long without refueling. A good rule of thumb to use: eat 100 calories for every hour it is until your next meal. So if it is 3 p.m. and you are hungry but dinner isn’t until 6 p.m., have a mid-afternoon snack with up to 300 calories.
Jean Harvey-Berino, PhD, RD, is a Professor and Chair of the Department of Nutrition and Food Sciences and Professor in the Department of Medicine at the University of Vermont. Her research focuses on behavioral treatments for obesity in adults and obesity prevention in children. As the lead researcher and founder of Vtrim, a behavioral weight loss program, Dr. Harvey-Berino has conducted numerous clinical trials in obesity treatment over the past 19 years. Her current research projects include an examination of how weight gain is linked to recurrence of breast cancer. Jean is a recipient of the 2008 James Beard Award for “The Eating Well Diet” book.
Greetings in October!
As we are all reminded in the stores this month, it’s breast-cancer-awareness time. Shelves are brimming with merchandise clad in pink or marked with pink ribbons to highlight the importance of stamping out breast cancer. Every year pink makes a bigger splash in our shopping experience, just as Halloween decorations did in years past.
A bit of history: Breast Cancer Awareness Month is an annual international health campaign organized by major breast cancer charities every October to increase awareness of the disease and raise funds for research into its cause, prevention and cure. AstraZeneca, which manufactures breast cancer drugs Arimidex and tamoxifen, founded Breast Cancer Awareness Month in 1985. From the beginning the major focus is to promote mammography as the most effective weapon in the fight against breast cancer. In 1993 Evelyn Lauder, of the Estee Lauder Companies, founded The Breast Cancer Research Foundation and adopted the pink ribbon as its symbol.
When I first was diagnosed with breast cancer in 1996 I didn’t hear any complaints about the “pink” month. In a win-win situation customers could buy their usual products while supporting breast cancer research. But in 2002 the Breast Cancer Action advocacy group launched the “Think Before You Pink” campaign warning shoppers to ask store managers what their money is actually funding. And some patients feel pink ribbons reduce their illness into a marketing ploy. I’m not sure if companies are making a profit from all the pink-themed merchandise or if all the extra money is indeed going to worthy breast cancer organizations. We do need to be wary consumers.
I’ve also heard more complaints these days from people who wonder why breast cancer garners so much attention, to the exclusion of all other diseases:
“I’m sick of all this pink stuff. Lung cancer causes more deaths than breast cancer but doesn’t get half the attention.”
“What about prostate cancer?”
“I don’t even like the color pink. Why would I buy anything like that to support something that doesn’t affect me?”
“I’ve got primary lymphedema, but the only lymphedema research that gets funded is that caused by breast cancer treatment.”
And on it goes. I’m sympathetic because I’m aware that our bodies can suffer from many different diseases the cures for which are equally important. I suffer from other conditions like lymphedema and Renaud’s syndrome, and have been treated for precancerous skin lesions. The only reasons I can muster for this extra attention are that U.S. women get breast cancer more than any other type of cancer except skin cancer, breast cancer is second only to lung cancer as a cause of cancer death in women in the U.S., and feminists (and perhaps cosmetics manufacturers) have promoted this cause to the hilt.
Maybe I’m not seeing red like others around me because I have benefited from advances in breast-cancer treatment, I’m not a cynic by nature, and I like the pink products (although I’d rather they be lavender). More importantly I would like to see breast cancer eradicated so I will never meet another person who says, “I have breast cancer.” If it leads at least one woman to get a mammogram, it might well be worth it.
In the meantime, I will wear my pink outfits and ribbons for this month and let the chips (and humbug stares) fall where they may. I also am wearing a turquoise rubber bracelet to raise lymphedema awareness. And then there’s the pearl ribbon for lung cancer awareness month in November and the teal ribbon for ovarian cancer awareness month in September. And yesterday I saw a purple rubber armband symbolizing awareness of all kinds of cancer. You get the idea. Now it’s time for you to get with the program that you support. Be creative in how to promote and highlight your cause so that it can be brought to the public’s attention as successfully as breast cancer awareness.
In the meantime, I wish you blessings in October, which is also Pastor Appreciation Month.
Mutations in the BRCA1 or BRCA2 gene predispose people to breast cancer and ovarian cancer as well as prostate cancer (BRCA1) and other cancers (BRCA2). In families passing down an inherited genetic mutation, multiple family members get the same type of cancer. About 5 to 10 percent of breast cancers are hereditary.
At my last checkup in May 2010 my new oncologist suggested I be tested for genetic variations in BRCA-1 and BRCA-2. Even though I have no family history of breast cancer, his recommendations were based on my diagnosis at the relatively young age of 43 and my recurrence at age 52. The test results would gift my sons with knowing of any inherited increased risk of contracting cancer. In addition, I would discover if my risk for ovarian cancer was higher than it otherwise would be.
This test is neither cheap nor without controversy. Even with insurance kicking in, I paid $375 out of my own pocket to obtain the results. And having worked as a patent attorney for over 32 years, I know that the cost heavily correlates with the BRCA-1/-2 patents held by Myriad Genetics, which conducts the tests. In late March of this year, a federal judge invalidated Myriad’s seven patents on these two genes. The decision, if upheld, could throw into doubt patents covering thousands of human genes and reshape the law of intellectual property. I realize the cost of the test is high, but also understand that patents are a limited monopoly granted by the U.S. Constitution and thus to be taken seriously. In the medical field where expense-shaving is lauded, patents often conflict with cost-cutting measures for prescription drugs and medical tests. I’ll leave this debate to the intellectual property gurus for now.
Rising above the politics and blessed to be able to afford it, I opted for the test. Just yesterday I discovered I don’t have mutations in these two genes. Joy fills my heart at this news. Not least because I don’t have to be screened so carefully for ovarian cancer. The biggest reward, though, is that my sons don’t have this added burden of genetics to ponder as they age. Life is hard enough without being concerned that a cancer gene or two might raise its ugly head when least expected.
Undergoing this test, however, has increased my compassion for those people found to have BRCA mutations. Many support groups are tailored to this patient population. Most organizations such as FORCE and BrightPink are national with affiliate branches all over the U.S. Patients or family members may want to start a branch in their own community. They can ask genetic counselors for specific support groups in their area. Their local hospital, Breast/Ovarian Cancer center, or doctor’s office may have information on local support groups. In addition, online support groups exist. Check out, for example, http://www.inspire.com/groups/advanced-breast-cancer/discussion/brca1-and-or-triple-negative, http://inthefamily.kartemquin.com/content/i-have-brca-mutation#support, and http://www.experienceproject.com/groups/Am-Brca1-Positive/184620. My prayers go out to these precious folks – and may they never lose hope or the comfort that God can bring.
For more information on BRCA-1 and -2 testing, I recommend the following respected links: http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA and http://www.mskcc.org/mskcc/html/8623.cfm.
Colorful and snappy September days to you.
We’re now in the dog days of summer. Having lymphedema and enduring the heat so long, I am ready for the fall.
My topic this month is sex and intimacy. Not a subject I address much in my Mourning Has Broken book. Nor do many other cancer survivor authors judging from the books I’ve read. The American Cancer Society put out a book addressing this issue that I found in my local cancer center library–a useful resource for those going through the trauma of surgery and reconstruction. It takes courage and moxie to write about painful intercourse. Nonetheless, it’s the elephant in the room for those of us with breast cancer. My having a double mastectomy with no reconstruction challenged my self-image dramatically. On top of that, I went into early menopause due to chemo and took Arimidex for years, an anti-estrogen drug that thins out the vaginal lining. These factors led me to find ways to increase the pleasure of intimacy.
It’s no surprise then that I identified with and related to the advice in an article from WebMD on this topic: http://www.webmd.com/breast-cancer/features/breast-cancer-sex-and-intimacy?ecd=wnl_brc_080310. To the boa idea I would add wearing a lacy camisole to add to the atmosphere. And I’ve read in a recent blog post on vaginal dryness (http://www.breastcancersisterhood.com/_blog/Brenda%27s_Blog/post/Sex_and_Breast_Cancer/) that we who have estrogen-receptor positive breast cancer should look for vaginal moisturizers and personal lubricants with no parabens, which may possibly have some estrogen-promoting effect. Replens is an excellent estrogen-free brand that I recommend in my book.
May all you survivors out there be encouraged that you are not alone in this difficult and very private challenge.
As a breast cancer survivor and vegetarian, I was thrilled to read about the most recent wonder supplement to reduce breast cancer risk: fish oil. I’ve been taking these capsules for over two years to get my share of omega-3 fatty acids since I eat salmon and tuna only rarely. Walnuts are also a great source of these fatty acids, but I don’t eat enough to meet the daily requirements for maintaining cardiovascular health. I started upping my dose about a year ago when my optometrist recommended 3000 mg a day to counteract dry eye, which I contracted in the arid climate where I live.
Then, when I read the most recent news that fish oil may reduce risk of breast cancer and chronic disease, I thought to myself, Here’s another supplement besides Vitamin D and baby aspirin that I’m already taking that now is found to stave off breast cancer. How cool is that? Before I get too excited, however, I must realize that these various studies coming out of academia and elsewhere make nice news, but really need to be proven further before one can conclude that certain dietary supplements really do act to reduce breast cancer risk. And there’s no substitute for whole fruits and vegetables in terms of overall nutrition and health.
But if you are curious about the latest study, visit http://www.breakthroughdigest.com/medical-news/fish-oil-may-reduce-risk-of-breast-cancer-and-chronic-disease and be encouraged.
By the way, my new poetry-laden book, The Pebble Path: Returning Home from a Forest of Shadows, is working its way through the distribution channels and soon will be available for ordering at Amazon.com, bn.com and other online bookstores as well as at my new website http://outskirtspress.com/webpage.php?ISBN=9781432754198 and at brick-and-mortar bookstores.
Have a wonderful and blessed rest of the summer.