18 October 2007

Financing Breast Cancer Treatment

I know a couple of women whose families have lost everything because of the enormous cost of treatment. Many of us don't have access to health insurance and, once you're diagnosed, premiums skyrocket. The following information comes from the Susan G. Komen Foundation.


Financing Issues-Medical Assistance


NeedyMeds.com
Drug assistance program information.
http://www.needymeds.com/

Partnership for Prescription Assistance
Drug assistance program information.
https://www.pparx.org/

Pharmaceutical Research and Manufacturers of America
Directory of pharmaceutical manufacturers' assistance programs.
http://www.phrma.org/

Y-Me National Breast Cancer Organization
Financial assistance for wigs, prostheses and mastectomy bras.
http://www.y-me.org/

CancerCare Linking A.R.M.S.(TM)
Financial assistance for some medications and medical supplies.
http://www.cancercare.org/

CancerCare
Financial assistance for diagnostic work-up, as well as information on drug assistance programs. See also Transportation Assistance.
http://www.cancercare.org/

Financing Issues-Transportation Assistance


American Cancer Society – Road to Recovery
Transportation assistance program.
http://www.cancer.org/

Mercy Medical Airlift
Air travel assistance for cancer patients.
http://www.mercymedical.org/

National Patient Air Travel HELPLINE
Air travel assistance for cancer patients.
http://www.patienttravel.org/

Lifeline Pilots
Air travel assistance for cancer patients.
http://www.airlifelinemidwest.org/index2.htm

Air Charity Network
Air travel assistance for cancer patients.
http://aircharitynetwork.org

Corporate Angel Network
Air travel assistance for cancer patients
http://www.corpangelnetwork.org/

CancerCare
Financial assistance for transportation to and from treatment and childcare when a parent is having tests or treatment. See also Financial Issues.
http://www.cancercare.org/

17 October 2007

La Cosa Nostra Smokah


After twenty years, I quit smoking several years ago. I'd been working on it for several years before I actually stopped. I used nicotine gum for a year or two as my safety net, but I certainly wasn't above a couple of cigarettes on the weekend. It's been a long, long time since I had even a puff. It's one of those questions they ask every time I see an oncology doctor. "How many days has it been since you had one puff?" Of course, I see a lot of people rolling around in those motorized wheelchairs (probably because of their chemo or radiation related fatigue), heads wrapped in scarves or capped with a wig, smoking with a vengeance. Sigh.

Even after this long, I think about smoking pretty regularly. When I'm driving down the street and someone has their window open with a cigarette hanging out (to escape their own second hand smoke, I assume), I long to get close enough to inhale. I take note of everyone I pass anywhere who's smoking. I work with one woman who still smokes and there's a guy who chews tobacco (but who wants that?). I could go downstairs and ask the Foot Lady for one of hers. There might be a foot conversation I'd have to participate in, but I do that fairly regularly, anyway. I haven't asked for one.

That was a long introduction to what may be a less than entertaining anecdote. Many years ago, there was a hot dog vendor who used to hawk his wieners down on Sixth Street, our version of the French Quarter in New Orleans (we're not really in the same league at all). He had a great story to tell about being a mob snitch from New York who was in the Witness Protection Program and had had to assume a new identity to escape the retribution of The Family. In Texas, we're not too familiar with wise guys. We've got gangs, but I'd guess we have very few no La Cosa Nostra representatives living here.

The Wiener Man complained bitterly of being harassed by the police and, in fact, he may have been hassled by them. One year, he'd finally had enough. But it wasn't the cops that ultimately became unbearable. Austin was in the early stages of outlawing smoking in public places. You could still smoke in some segregated areas in restaurants and bars were pretty much excluded, but the places you could light up were severely limited. Wiener Man was outraged and decided to run for City Council.

It was a weird election year, no doubt about it. We had a couple of transgender folks running, one of whom (Leslie) lived in a little trailer that he had to move himself like a rickshaw. He became a kind of tourist attraction. He had a sizable number of financial supporters but, sadly, an equal number of people who hated him because of his penchant for hanging out on the streets of Austin in a speedo or a wedding gown (he loved heels and wore them with both outfits). The other transgender person was also homeless, but low key. I never knew where Jennifer Gale lived and she was always dressed appropriately, though clearly in need of some more hormonal intervention. Jennifer Gale (who still mounts a campaign at every opportunity) became the candidate of transgender acceptance.

Despite the entertainment value of Leslie in his speedo who had absolutely no platform whatsoever, it was the Wiener Man who stole the show. When it was his turn came to define his agenda, it took exactly two minutes. He paused dramatically and croaked,

"I'm a smokah." He reached into his sports shirt pocket and pulled out a pack of unfiltered Camels. He held them in front of the camera as proof, I suppose, that he wasn't just jacking us around. He was the real deal. As if the gravelly sound of his voice wouldn't have been proof enough.

"I wanna look out for the rights of my fellow smokahs. If you're a smokah and you're sick of bein' run outta the stores and restaurants, vote for me."

The smokah candidate did not win that year. Not too long after, he moved to sunnier digs in Florida. I don't know if he had to assume a new new identity, after having outed himself at least in this city. I think of him from time to time, when I long for a cigarette. I only wish he'd won. What fun that would have been.

16 October 2007

Warm Cookies

"Think what a wonderful world it would be if we all, the whole world, had cookies and milk about three o'clock every afternoon and then lay down on our blankets for a nap." ~ Robert Fulgham

Ahhh
...warm cookies. Crazy Employee has redeemed herself today by ordering warm cookies in celebration of Boss' Day. (I had to go into Owner's office and talk him into having one. He's on a perpetual on again, off again diet.) As for me, I indulged in two chocolate chip cookies and I'm in danger of lapsing into a sugar coma. (If this post ends suddenly, you'll know EMS probably had to be called.)

I have a rule about eating the stuff available in Crazy Land. We're awash in M&M's, peanut butter cups, Hershey's kisses--if it's candy, we probably have it. No one here should be eating any of it and I shudder to think how many pounds of sugar each individual in Crazy Land consumes annually. I'm not opposed to sugar. As a matter of fact, I have an enduring and passionate love for chocolate. I've spent several evenings in Houston, after a long day at M.D. Anderson, searching for an individual piece of chocolate cake. Just so you know. I'm as self-indulgent as anyone else.

About ten years ago, though, I discovered my penchant for eating as a way of dealing with stress. What did I eat? Yep. Candy. I don't recall any resulting weight gain, but once it dawned on me that anxiety led directly to sugar, I called a halt to eating anything that might be available at work. For a while, I couldn't even go by the receptionist's desk (the home of all death food). That created some problems for me, because half the staff is located on the other side of the building and the only way to get there is to walk past the receptionist's desk.

I have an excellent excuse for today. I'm back to sleeping about 4.5 hours a night. I need a sugar rush to keep me awake. Or, at least, to keep me awake until the coma ensues. Why no sleep? Who knows, but I'm guessing it's related to Crazy Land. I was fine over the weekend and actually got a reasonable amount of sleep.

I've now had conversations with virtually all of my co-workers and it's only Tuesday. Loathsome and I (well, mostly Loathsome) discussed his genius grandson. It was just like every discussion I've ever had with him. It's all about Loathsome; my job is to gaze admiringly at the perfection that is his very being. I did not disappoint. I've learned the hard way that admiring wins my freedom sooner than actually engaging in dialog.

The Information Superhighway is back after having taken a couple of days off to move into her new home. She's still feeling the sting of Crazy Employee's accusations that she's "mean" and "picks on" Crazy. It's good to have the Superhighway back. She's the most reasonable person here.

Her supervisor, Mr. Moneybags, arrived this morning in his favorite mood--enraged. We have no idea why other than that he's a white, middle-aged, bitter man who had reason to believe that his kind would rule the world. They still do, in fact, but there's just a tiny bit of interference by women, black people, Hispanic people and liberals. Furthermore, Jesus requires that he cast a wide net of hatred and fury. That's his version of Christianity, anyway.

I ran into Foot Lady who, under the guise of asking about the reconstruction ordeal, managed to work the conversation around to her feet. It was a banner day for her. She got to take not one, but both of her shoes off and make me look at her feet.

Hemorrhoids were the topic du jour with the Shunner. What's happened to me? I used to consistently give off the vibe of being a person with whom you'd never, ever, ever discuss anything even remotely related to intimate body parts or functions. The inhabitants of Crazy Land don't understand boundaries, though, and a disapproving raised eyebrow does nothing to restrain them.

Is there more? Of course there is. But the memory of warm cookies has cast a rosy glow on the whole week. I'm more entertained than annoyed. Note how easy it is to please me. Plus, I managed some yoga last night and the world is always brighter when I've twisted myself into positions with which my body is no longer remotely familiar. Cookies guarantee another round of it tonight. Proud Warrior and Gate Pose--suddenly the body wishes it had never walked by the receptionist's desk.

On Becoming a Breast Cancer Survivor


Harvard Women's Health Watch | October 2006

On becoming a breast cancer survivor

Getting through treatment is only the beginning.

The impact of breast cancer is as individual as the women who survive it. It can be an arduous though temporary challenge or an experience so transformative that it divides existence into two parts — before and after.

Perry Colmore has experienced the disease both ways. When she was 45, she was diagnosed with lobular carcinoma in situ, a noninvasive disease that signals an elevated risk for invasive breast cancer. Given the choice of preventive double mastectomy or simply removing the small tumor, she opted for a lumpectomy. “I breezed right along, assuming I’d be among the 80% who don’t have a recurrence,” she says.

And so she was — for seven years. Then a lump in her other breast turned out to be an invasive cancer that had already reached 12 lymph nodes. She underwent a mastectomy followed by radiation and chemotherapy.

Colmore has been cancer-free for more than a decade, but her health has suffered. Radiation treatments damaged one of her lungs, causing wheezing and breathlessness. She’s weathered bouts of pleurisy and pneumonia. And intensive antibiotic therapy for her lung diseases triggered severe diarrhea, resulting in a 40-pound weight loss.

Colmore’s experience isn’t typical, but it does suggest the range of later effects that can follow in the wake of breast cancer. The good news is that most breast cancer survivors are living long past the five-year survival benchmark of yesteryear. But many also find themselves facing the long-term consequences of the treatments that saved their lives.

Growing recognition of survivor needs

As the ranks of cancer survivors have swelled to more than 10 million, their health has attracted increasing attention from scientists and physicians. The Institute of Medicine (IOM) has formed an expert committee to consider the quality of life and care of cancer survivors. The panel’s report, From Cancer Patient to Cancer Survivor: Lost in Transition, published in 2005, acknowledged that cancer care too often ends when patients complete their initial treatments. There may be little communication between the patients’ oncology teams and their primary care doctors. The IOM advises physicians to craft a “survivorship plan” to guide health care in the years following treatment.

Several large cancer hospitals around the country, such as Dana-Farber Cancer Institute in Boston, Fred Hutchinson Cancer Research Center in Seattle, and Memorial Sloan-Kettering Cancer Center in New York, have already instituted special programs or clinics for survivor care. At these centers, clinicians specialize in keeping cancer patients healthy and strong, reducing the risk of subsequent disease and, for breast cancer survivors, recognizing and treating the effects of breast cancer therapy.

Schedule of follow-up exams for breast cancer survivors

Exam

When

Physical exam

  • Every 3–6 months during the first 3 years after treatment

  • Every 6–12 months during the 4th and 5th year after treatment

  • Annually after 5 years

Breast self-exam

Monthly

Mammogram

Annually

Pelvic exam

Annually

Source: Guidelines developed by the American Society of Clinical Oncology

Treatment’s toll on the body

Cancer survivors are at risk for two kinds of side effects from treatment: Long-term effects, which begin during therapy and persist after it is completed, and late effects, which arise months or even years after treatment has ended.

The most common long-term effects include the following:

Fatigue. About 30% of breast cancer survivors are fatigued for five years or more after successful treatment. Any number of physical factors, including anemia and inflammation resulting from radiation or chemotherapy and loss of muscle mass, can account for fatigue during and after treatment. The psychological toll of treatment can also be exhausting. Though there’s little research on the subject, many women continue to shoulder responsibilities for jobs and managing households during and following their cancer treatment. Who wouldn’t be exhausted?

Weight gain. For reasons that science hasn’t fully explained, women undergoing breast cancer chemotherapy gain an average of five to eight pounds. Moreover, the excess poundage is all fat, rather than a combination of fat and lean tissue.

Nerve damage. Surgery can damage nerves in the treated breast and chest, resulting in numbness or pain. Chemotherapy may affect peripheral nerves, particularly those in the hands or feet.

Late effects can include these:

Lymphedema. Up to 25% of breast cancer survivors experience some degree of arm swelling following the removal of underarm lymph nodes, which is essential for evaluating the extent of the disease. Lymph node excision can damage the lymphatic drainage system, causing fluid to build up in the arm on the affected side. Lymphedema can appear weeks or months after surgery and is exacerbated if the arm is injured or infected.

Menopause discomforts. After breast cancer treatment, many women take tamoxifen, a selective estrogen blocker, for five years to prevent a recurrence. On the positive side, tamoxifen increases bone density and improves cholesterol. But it also produces menopausal symptoms, primarily hot flashes and vaginal dryness.

Osteoporosis. Women who undergo menopause following chemotherapy have a higher rate of bone loss than women who have a natural menopause. Aromatase inhibitors, such as anastrozole (Arimidex), letrozole (Femara), and exemestane (Aromasin), which are frequently a part of breast cancer therapy, block the production of estrogen in fat and other tissues. Treatment with these drugs is associated with a higher risk of fractures than tamoxifen therapy and may also be responsible for joint and muscle pain.

Subsequent cancer. Breast cancer survivors have an increased risk of developing cancer in the other breast. Also, some treatments increase the probability of developing certain other forms of cancer, although the risk is very low. For example, tamoxifen is associated with an increase in endometrial cancer risk, and high-dose cyclophosphamide therapy heightens the risk of acute myeloid leukemia.

Lung damage. Lung tissue can be damaged if radiation to the chest cavity reaches the lung. In about 1% of survivors, it leads to radiation pneumonitis, an inflammatory condition that usually occurs two to three months after treatment and can result in susceptibility to respiratory infection.

Congestive heart failure. Cardiac damage is increasingly rare as chemotherapy doses decline, but women who received high doses of doxorubicin (Adriamycin) may sustain damage to the heart muscle. Such damage can result in fluid buildup in the body and lungs, making it more difficult to breathe and exercise.

Breast cancer’s effects on the psyche

The end of treatment is one of the most stressful events in the cancer experience. Often friends and family expect a woman to be fully engaged in life the day she finishes treatment. But while a breast cancer patient may rejoice that radiation and chemotherapy have ended, she typically feels anything but normal. Not only is her body irrevocably changed, she’s also likely to be on uncertain emotional terrain.

“What others usually don’t realize is that the recovery from treatment may take as long as the treatment itself,” says Hester Hill Schnipper, Director of Oncology Social Work at Beth Israel Deaconess Medical Center in Boston. Schnipper and other health professionals who work with cancer survivors have observed that the emotional effects of cancer therapy are far less recognized than the physical effects, yet they are just as profound.

Typically, a woman marshals all her psychological defenses to get through treatment. When therapy is over, she can finally let her guard down but then may be flooded with intense and conflicting emotions. The occurrence and intensity of reactions vary from woman to woman, but most experience the following:

Fear and anxiety. For women who have just completed chemotherapy or radiation — or five years of tamoxifen therapy — the end of active cancer treatment can be disconcerting. After months of regular medical care and attention, they often find themselves abruptly severed from the oncology team that’s sustained them during treatment. Equally common, and more distressing, is the specter of recurrence, which can color every aspect of life.

Grief. Breast cancer brings loss — be it as minor as the claim to perfect health or as monumental as the ability to have children. Grieving is a natural response to loss, and it may take months or years to complete.

Erosion of self-image. The physical effects of treatment — loss of a breast, hair loss, weight gain, radiation burns, and surgical scars — are reminders of one’s vulnerability. Breast cancer survivors may feel that they’re less attractive and that their vitality is diminished. The adjustments can be especially hard for young women who are thrown into menopause by chemotherapy.

Changes in intimate relationships. It goes without saying that a woman’s sex life is affected by breast cancer. Illness is a notorious thief of libido. In addition, a survivor’s partner may feel breast cancer’s toll on body and body image as deeply as the survivor herself.

Effects on the family. Breast cancer is a family affair. Family members are likely to want to get the household back to normal after treatment ends, and they may not be patient with the partner or mother who needs more time to recover.

Resources for survivors

After Breast Cancer: A Common-Sense Guide to Life After Treatment, Hester Hill Schnipper, Bantam Books, 2006

LIVESTRONG SurvivorCare
866-235-7205 (toll free)
www.livestrong.org

Cancer Survivors Network
American Cancer Society
800-227-2345 (toll free)
www.acscsn.org

The Wellness Community
888-793-9355 (toll free)
www.thewellnesscommunity.org

Breast Cancer: Strategies for Living, a Harvard Medical School Special Health Report, Harvard Health Publications, 2006

Living Through Breast Cancer (from Harvard Medical School) by Dr. Carolyn Kaelin, McGraw-Hill, 2005

The Breast Cancer Survivor's Fitness Plan (from Harvard Medical School) by Dr. Carolyn Kaelin, McGraw-Hill, 2006

Being a survivor

Breast cancer is a rough storm, but many women weather it well, buoyed by gratitude for life, hope for the future, and the support of loved ones. Some, like Perry Colmore, use it as the fulcrum for a major life change. When breast cancer returned, Colmore was a newspaper editor. As she experienced the intensity of the disease, she decided that it was a story worth telling. She told it through the experiences of 40 breast cancer survivors in the photo-essay book, Living with Breast Cancer: 39 Women and One Man Speak Candidly about Surviving Breast Cancer (Andover Townsman, 1997).

Perry and her husband also took stock of their life together. Their children were grown, so they traded their suburban home for an apartment in the city and a house on the beach. She quit her job to devote more time to working with breast cancer patients. She now volunteers at a hospital as a companion for women undergoing treatment and leads a cancer support program at her church. “I can’t say that I’m happy I got cancer, but I’m happy with my life,” she says.

Getting the help you need

If you’re a breast cancer survivor, these steps may help:

Work closely with your primary care doctor. According to Jennifer Potter, M.D., director of the Women’s Health Program at Boston’s Beth Israel Hospital, it’s important to make sure your clinician has your complete cancer history — including surgical reports, radiology records, and drug information. At your first post-treatment visit, you may want to discuss your treatment experience and openly air your fears. If your doctor seems ill at ease with your new status, find one who has experience with cancer survivors.

Join a support group. Breast cancer survivorship may not be a sorority you ever intended to join, but its ranks are legion. It can be therapeutic to talk with someone who’s walked in your shoes. If you’re looking for a specific type of survivor group, for example, single women or mothers of teenagers, there’s a good chance you can find it — if not in your community, then possibly online.

Stabilize your relationships. If cancer has put a strain on your relationships or unearthed problems that took root earlier, consider getting help. A mental health professional can help you develop healthier ways of interacting.

Treat yourself. When you were sick, it was probably comforting to have others take care of you. You may not be a patient any more, but there’s no reason for the nurturing to end. Make a list of things that might give you pleasure — from a vase of fresh flowers to a visit to a day spa — and schedule them into your life.

Invest in the future. This can be something as small as planting an amaryllis bulb to bloom in a few months or as large as launching a new career. Planning for the future is one of the best ways to overcome the fear that it won’t be there.

15 October 2007

Lonely

" The most I ever did for you was to outlive you. But that is much." ~ Edna St. Vincent Millay

For almost a year after my father killed himself, images repeatedly flashed in my head of myself pointing a pistol at my temple. They're back. My father's weapon of choice was a shotgun. I guess my brain can't wrap itself around that vision. After all, I have long legs, but short arms. I could have shot myself with my feet, maybe, but toe dexterity would have probably been insufficient to the task.
I don't find the images as disturbing as I once did, but I'm cataloging the advent of the ten year anniversary of his death. So here it is.

I've been struggling to find some good memories, something positive in our relationship. It seems more critical this year than any other. I always come up empty. My therapist wonders why it's so important to me, why I'm so queasy about admitting to the "hate" part of my love-hate feelings about him. The answer is simple: I wish there were something positive, I long for the simplicity of love without dire complexity.

I have compassion for him, forgiveness in some large measure, I pity him for his desperate childhood and his desolate mental illnesses. But then I have those flashbacks and all I can feel is rage, contempt and despair. How might my life have been had his been different?

It would certainly have been less labyrinthine. I have the ability to see every side to every issue, to find goodness in people when it's buried under layer upon layer of hatred and anger. These are good things, right? On the whole, I think they are, but they leave me perpetually sitting on the fence, unable to find clarity about people and events. It's all complicated to me.

And I'm a very complex, very hidden person. If you don't know the events that shaped me, how can you understand my beliefs and behavior? How can you understand my choice of solitude at all costs? I choose to keep my secrets. They're fantastical. They're incomprehensible. They're an open invitation to judge me and where I came from. They make me very lonely.






U.S. Breast Cancer Death Rate Drops


Good news and bad news from the American Cancer Society, brought to you by WebMD. http://www.webmd.com/breast-cancer/news/20070925/us-breast-cancer-death-rate-drops?ecd=wnl_brc_100907

But a Race Gap Persists in America's Breast Cancer Death Rate
By Miranda Hitti
WebMD Medical News
Reviewed by Louise Chang, MD

Sept. 25, 2007 -- The American Cancer Society (ACS) today reported that U.S. breast cancer deaths continue to drop, but that decline still hasn't reached all ethnic groups.

That news appears in the ACS' biannual report on breast cancer in the U.S.

According to the report, breast cancer deaths declined by 2.2% annually from 1990 to 2004, partly due to earlier detection and advances in treatment.

But there are racial gaps in those figures, the report also shows.

Breast Cancer Race Gap

The ACS reports that breast cancer deaths dropped 2.4% per year from 1990 to 2004 in white and Hispanic women, compared with 1.6% annually in African-American women.

Women's breast cancer death rates didn't change during that time among Asian-American/Pacific Islanders, American Indians, and Alaska natives.

The precise reasons for those racial patterns aren't clear. Genetics may play a role, but other factors including income and access to medical care are also important.

"A woman today has a lower chance of dying from breast cancer than she's had in decades," says Harmon Eyre, MD, chief medical officer for the ACS, in a news release.

"Unfortunately, not all women are benefiting at the same level," says Eyre, noting that by 2004, breast cancer death rates were 36% higher in African-American women than in white women.

The ACS estimates that about 40,460 U.S. women will die of breast cancer in 2007 -- and that about 2.4 million women living in the U.S. have a history of breast cancer.

But breast cancer isn't U.S. women's leading cancer killer -- lung cancer is -- and heart disease kills more U.S. women than all cancers combined.

Latest Breast Cancer Statistics

In the new report, the ACS predicts that an estimated 178,480 new cases of invasive breast cancer will be diagnosed this year among U.S. women.

Invasive cancer has spread from its starting point into surrounding breast tissue. Most breast cancers are invasive.

The ACS also estimates that 62,030 new cases of in situ breast cancer (cancer that hasn't spread beyond its starting point to other breast tissue) will be diagnosed in 2007.

Breast cancer is far more common among women than men. The ACS predicts that in 2007, about 2,030 cases of breast cancer will be diagnosed in men, accounting for about 1% of all breast cancers.

The ACS estimates that 450 men will die of breast cancer in the U.S. this year.

Breast Cancer Rarer?

Breast cancer is U.S. women's most common cancer (except for skin cancers), but it may be becoming rarer than in the past.

Don't race past that word "may." Undetected breast cancers due to missed mammograms may be contributing to the trend.

The ACS reports a 3.5% drop per year in breast cancer cases from 2001 to 2004.

That decline follows a sharp rise in breast cancer cases from 1980 to 1987 that slowed until 2001 and then headed down.

Why the turnaround? The ACS notes two possible reasons.

Reason No. 1: Many women halted hormone replacement therapy (HRT) starting in 2002, after the Women's Health Initiative linked HRT to breast cancer risk. Researchers continue to debate that risk.

Reason No. 2: Mammography rates are down. Some women may have breast cancer and not know it. That would make breast cancer rates look lower than they really are.

Mammography isn't a perfect test, but it's the best way to screen women for breast cancer.

Breast Cancer Perspective

A woman living in the U.S. has a 12.3% (1 in 8) lifetime risk of developing breast cancer, states the ACS report.

But remember, that's a general number about a woman's odds of developing breast cancer at some point in her life -- not this year, or even this decade.

Breast cancer becomes more common with age, but it can also strike before menopause, so the ACS encourages women to learn what's normal for their breasts and to get lumps checked by a doctor.

Most lumps aren't breast cancer. But don't assume that a lump is no big deal. Check with your doctor to find out -- and remember, if it is breast cancer, the sooner it's detected, the better your chances may be of survival.