The Frog List

image“I can use all the prayers I can get!”

In August 2011, Jessica Rice had a little cough—‘nothing to worry about’–and a low grade fever that kept her out of work a couple of days. By early October the cough became “productive.”  She did what any healthy, 30 year old Vice President of Global Projects at Citi Corporation would do–she went to the CVS Minute Clinic for some antibiotics.  Since the cough had been around for a bit, they sent her to her primary care physician.  Convenience always paramount, she found a physician who practiced in the building where she worked.  He said she had allergies.

By the end of October, she’d been sent to a rheumatologist and was coughing up blood.  Finally admitted to the hospital November 8th, she relates,  “I left work Friday as someone who just seemed really sick, and by Monday, I was stuck in the hospital .. .with a mystery illness that wouldn’t get better.  Didn’t know if I would ever get to even go home at that point. ”  It took six days of testing to find out she had lung cancer.

Not a smoker, with no family history of lung cancer, Jessica’s diagnosis is an extremely rare cancer called bronchioloalveolar cell carcinoma in the diffuse form. With this form, surgery is not an option.  Her cancer is stage 4—there is no stage 5.

When she learned her diagnosis, she wasn’t told a prognosis, “I believe…there are far too many variables to give an accurate prognosis,” she says.  “I do ask my specific questions regarding timelines. For example: If I have zero response to this treatment and my tumors continue to grow at the same rate, how long until I succumb to them?”

Until she lost her hair, in August 2013, she didn’t even look sick.  “People didn’t understand why a normal, younger adult was being pushed around the mall in a wheelchair.  Or why I parked in handicapped spaces.  It was a bit annoying, watching people scan me up and down, trying to figure out my defect…” Jessica states.  “Seth (my fiancé) and I have coined it “the jaw drop” when people find out.”

Lung Cancer: The Facts

Currently, most people are diagnosed with lung cancer at stage 3 or stage 4.   According to radiation oncologist Dr. Matthew Katz, “Our ability for early detection is poor and earliest symptoms are pretty silent or nonspecific.”   As Jessica writes in her blog, “Lung cancer tops the list with the highest number of deaths for both men and women.  In fact, it kills nearly the same amount of people as colon, breast, pancreatic, and prostate cancers combined.”  Though her former life didn’t include this type of advocacy, Jessica is now using her writing and social media skills to share her story and bring the lung cancer experience to light.  In her blog post ‘Lung Lost Love,’ she continues to describe  the terrifying statistics around this disease “The 5-year survival rates for stages IIIa, IIIb, and IV are 14%, 5%, and 1%, respectively.” And she notes that, even if it is caught early, treatment doesn’t result in much improvement—5 year survival rate for stage IIa non-small cell lung cancer is 30%.

Jessica has been fortunate to have oncologists  that she can trust.  “My oncologist is up-to-date on the latest treatments.  And when I would ask about consulting with another doctor, he would encourage me, reach out to that doctor himself to discuss my case both before and after I met with them.”

One positive outcome is the proactive work these physicians have done on her behalf.  “The hospital pulmonologist and my oncologist (before I ever met him) sent my biopsies for EGFR and ALK testing automatically. It seems that some people have to request this from their doctors, so I feel fortunate that mine were up-to-date on the latest treatments and didn’t hesitate to take action. (I did test ALK+, and the targeted therapy crizotinib was my first line of treatment.)”  Since her diagnosis, she has had 6 different treatments including a clinical trial and radiation.

This past June, Jessica had a gran mal seizure.  Fortunately, she received emergency care and survived without severe disability.  Unfortunately, the seizure signaled that something had changed.   This brilliant woman–a Wharton business school graduate – (now age 32) has brain metastases.  In her blog she writes, “If abnormal organs are prone to defects then my brain would be the lightning rod of my body. My entire life it has been my blessing and my curse. It’s riddled with more IQ points than even I believe and an intuition that can border on creepy.”   She’s coined a phrase for the tiny metastases that can be seen on MRI scans as “brain lint.”

“My Frog List”

Awareness of her mortality ever present, Jessica wishes “someone on my medical team would talk to me about what I want towards the end. After my seizure, I know it could come anytime.”  Some of the things she wants are found on her blog. “The term bucket list was made most popular by a movie in 2007.  Everyone knows it means that these are the things you want to do “before you kick the bucket.”  Honestly, it seems a little cold and crude to me.  And, never one to blend in to the crowd, I decided to think of something a little more creative, a little more me.”  That’s why she calls hers My Frog List .  “My Frog List is what I want to do before I croak!”

Jessica grew up on a hobby farm.  She and her mother (her “best friend”) now own a small hobby farm in West Virginia.  “Our animals are our family,” she says.  Part of her frog list is about bringing home and family closer. “Sometimes I look for normalcy more than anything else,” she relates.  Her frog list would bring normalcy to her life. “My Frog List is relatively short. Top priority is to get my mom (and our animals) closer to me. Need to do this ASAP.  After mom is close, a Wedding and Honeymoon,” she says.

Making these dreams a reality is possible but only with the help of others.   Friends have set up a website to make the move, her wedding and her honeymoon a reality. “It’s comforting to know that I’m not alone – WE (Seth and I) aren’t alone – as we go through this.”

You can find out how to help by visiting Stage IV Blog and YouCaring.com.

“I really want to thank you all for … listening to my rambling, reading my blog, and sharing my story,”

Based on #HCHLITSS transcript September 12, 2013  #LCSM transcript September 5, 2013.  Thanks to the Healthcare Hashtags Project

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“A Needed Response”

Public health is about keeping people safe…be it through immunizations, assuring clean water or preventing gun violence.  Here is another safety issue we need to address:

A story about a friend…

There was once a very protected girl.  She did not date until she was 18.   She was an innocent.  She told the boy that she was dating that she would not have sex until after marriage.

She shared champagne with this boy and drank too much.  The next thing she remembered was going to the bathroom, feeling pain and seeing bright red blood.

The boy said to her, “I’m so glad I was the first.”

She continued to date this boy….thought she had to marry him.  She almost took her life.   Only with counseling did she realize she had been date raped.  She broke off contact with the boy.  She spent years in therapy.

He  became a successful physician.

Watch this incredible video with an important message.  It should be part of every boy’s and girl’s education.

Good news on Metastases Research!

Just a short note “quote”…

The Answer to How Breast Cancer Invades Bone

Researchers recently solved the mystery of how breast cancer takes root in the bone. Now, the discovery has led to an experimental drug for breast cancer that has spread to the bone.

At Princeton University, Society grantee Yibin Kang, PhD, found breast cancer cells use a protein called Jagged1 to upset the normal balance of bone builders and bone demolishers. Jagged1 recruits cells that normally break down bone to dig deeper into it. This in turn releases molecules that further spur cancer growth.

“We knew the bone is a fertile soil for breast cancer to spread to. But we didn’t know why. We didn’t know how to make bone less fertile soil,” says Kang, Princeton’s Warner-Lambert/Parke-Davis professor of molecular biology. “Now that we know, the next step is to design drugs to break that vicious cycle.”

Breast cancer spreads, or metastasizes, to the bone in 70% to 80% of patients with advanced breast cancer. These malignant cells invade the spine, ribs, pelvis and other bones, causing pain, fractures and other complications. Current treatments offer symptom control but little else, Kang says. “The hope is that with more options, more combined agents, we can effectively control bone metastasis and hopefully treat it as a chronic condition,” he says.

Kang and his lab team are now working with drug maker Amgen to test an experimental monoclonal antibody (a man-made protein) that blocks Jagged1 in mice.

Kang hopes his quest in the lab one day results in lives saved in the clinic. “What we try to do in the lab is to figure out what the enemy is capable of and how cancer achieves its goal of spreading and killing patients,” Kang says. “You have to know your enemy to defeat it.”

(Please be advised this is a direct quote from American Cancer Society)

Bed Rest versus Family Survival

Language matters.  So when we talk about changing a discussion of “Women’s Health” to “Women and Health,” we aren’t being tedious.  We are being profound.*

“Women and Health” is a phrase that recognizes the roles of women in the health system, from informal providers of care to primary decision makers about health in their families.  It also acknowledges the worldwide increase in numbers of women in medicine and as health professionals.

Unfortunately, many societies are neglecting the needs of women throughout their lives.  For example, every year hundreds of thousands of women die in pregnancy and childbirth.  The inequity of health care is evident by the fact that 99 percent of those deaths are in developing countries.

When women are healthier, children survive and are healthier and that means the continuance of communities.  High infant mortality is a direct function of women’s health prior to conception, during pregnancy and after pregnancy.  Even in developed countries, health disparities increase the problems in pregnancy and increase infant mortality.

Darline Turner-Lee is actively working to help high-risk mothers-to-be in the US.**  She is a physician assistant and certified exercise specialist.  Her expertise along with her personal pregnancy experience has led her to create the blog and company Mamas on Bedrest & Beyond.  “I work to educate women and raise awareness to the issues of Mother/Baby friendly childbearing….I educate women to ask questions, be aware of any new changes in their health….”

Her focus is on women who have been prescribed to bed rest.  For those who are unfamiliar with the bed rest prescription she explains, “The “reason” bed rest is prescribed is to prevent preterm delivery. High blood pressure, pre-eclampsia, cervical insufficiency, preterm labor and multiple gestation are some of the most common reasons, but there are many.”  The bed rest prescription is more common than one would think, “Each year about 750,000 to 1milion women are prescribed bed rest during pregnancy.”

In her work with mothers who have been prescribed bed rest, Turner-Lee sees first hand, the impact of disparities on women and their children.  “When working women are placed on bed rest, they risk losing their jobs, their income and family security,” she describes.  “The disparity occurs between lower income women and women of higher socio-economic status,” she notes. “Lower socio-economic status women often can’t leave their jobs, so don’t “comply” [with the bed rest prescription].  As a consequence, those women, often minority women, end up with poorer outcomes.”

But as Turner-Lee points out it is not an issue of medical compliance. “Women weigh their options-provide for their “living” family or save an unborn baby.  It’s a hell of a choice to have to make,” Turner-Lee realizes.

Although there is legislation that should protect women, the Family Medical Leave Act (FMLA) only guarantees 12 weeks of unpaid leave with job guarantee.  Turner-Lee explains, “A big problem is the lack of paid maternity/sick/family leave in the US.   In lower paying jobs, if you are out, you don’t get paid.  After that, a woman is on her own. Between losing their income, being placed on bed rest (often in hospital), financial problems quickly rise. If mama or baby has complications, the medical expenses often render families bankrupt. It’s a huge issue.”  A prescription of bed rest can, in fact, be “devastating” for lower socio-economic women and their families. For example, with a diagnosis of cervical insufficiency, women may have to go on bed rest with four and a half months left in their pregnancies. In this situation, “complying with a bed rest prescription is “the difference between having a home and being homeless and hungry.  Even women in so called “white collar” jobs, if they are unable to work, they are at risk of losing their jobs, their

Of course, increasing opportunities for good health is the best way to prevent at-risk pregnancies.  In the present environment, preventing the possibility of bed rest is “really good prenatal care, really early in the pregnancy,” says Turner-Lee.  She cites research by Jennie Joseph, CPM, who has gotten positive results in starting prenatal care at six weeks which is two to six weeks prior to when US obstetricians typically first see mothers-to-be.  “In the US, obstetricians typically don’t see mamas until between 8-12 weeks and often a problem may already be brewing,” says Turner-Lee.benefits.”

Turner-Lee points to statistics.  “The US has some of the highest infant mortality rates in the world; highest amongst indus

trialized nations and even amongst some “developing” countries.”  The Office of Minority Health, part of the US Department of Health and Human Services provides some other sobering facts about US infants:

    •  African Americans have 2.3 times the infant mortality rate as non-Hispanic whites. They are three times as likely to die as infants due to complications related to low birth weight as compared to non-Hispanic white infants.
    • African Americans had twice the sudden infant death syndrome mortality rate as non-Hispanic whites, in 2008.
    • African American mothers were 2.3 times more likely than non-Hispanic white mothers to begin prenatal care in the 3rd trimester, or not receive prenatal care at all.
    • The infant mortality rate for African American mothers with over 13 years of education was almost three times that of Non-Hispanic White mothers in 2005.
    • African American infants are 2 to 3 times more likely to die before their first birthday than any other group.
    • Stillbirth is more likely in African-American women than any other ethnicity.***

Preventable conditions like hypertension and diabetes, (conditions that are more prevalent in low income women) are risk factors for problems during pregnancy.  Likewise, infections that impact the fetus are also more common in African American women.

Health disparities based on income and ethnicity impact mothers-to-be, fetuses, mothers, babies, children and all adults.
Women in every society are the main caregivers of children, the elderly, the sick and the disabled. Perhaps focusing on the right to health, which according to the World Health Organization, compels governments to create conditions so that everyone can be as healthy as possible, is the best starting place.  Because assuring that women are as healthy as possible is not just about their individual health, it is about the future health of their children, the health of a nation. Ensuring this human right makes sense for society.  In the US, even bed rest, a way to possibly prevent infant mortality can actually financially destroy the mother, a possible surviving baby and the rest of the family.  Is it possible that there is another way?

* For more information on this exciting change read this discussion by Julio Frenk, Dean of the Harvard School of Public Health

** The quotes from this piece are based on a twitter chat #hchlitss moderated by Kathleen Hoffman and RV Rikard held on October 18, 2012 with D. Turner-Lee.

***Content directly from Mama’s on Bedrest gathered from the Office of Minority Health

Women, Care-giving and Health Literacy

Health literacy is essential to care-giving in the 21st century. The term health literacy is confusing because we can be highly educated yet still have poor health literacy.  So what is health literacy?  It’s about understanding complex terminology.  It’s about conversational competence like the ability to listen effectively, articulate health concerns and explain symptoms accurately.  It’s also about evaluating, analyzing and deciding about one’s own care. It’s not just reading.

Health literacy is important for us as healthy women, but is it also critical for our family. As women, we are the caregivers in the family. According to a 2001 study, 80% of moms were responsible for choosing their children’s doctor, taking them to appointments and pursuing follow-up care. Moms were also responsible for making health insurance decisions and for caring of the extended family.

What happens when women are not health literate? We are less likely to receive preventative care, such as a mammogram or PAP smear. If we don’t seek important screening tests, we find diseases like breast or cervical cancer at later stages.  Indeed, women with low health literacy are more likely to have chronic conditions like high blood pressure, diabetes and asthma and have difficulty managing these conditions.

Women with limited health literacy often lack knowledge or have misinformation about their body. Without this knowledge, we may not understand how and why diet and physical activity are important in reducing the risk of certain illnesses and conditions. As the ones who take on much of the dietary responsibility of families, we need to know what is good for all of us and why.

If women are not health literate, we may also miss important information during critical health decision-making. In situations that are highly emotional, such as a diagnosis of cancer, it is difficult to recall and understand what has been said. Even under optimal circumstances, patients in these situations leave the physician’s office with only about 50% of the information that has been provided to them.

If one is not health literate, the situation may be more dire. In one study, 80% of breast cancer patients with low health literacy made final decisions about their therapy after only one visit with an oncologist. When researchers compared these patients’ expectations about their  chance of a cure to that of their oncologists, 60% of the women had overestimated their chance of a cure by 20% or more.  While overestimating one’s chance for a cure might not be a bad thing, not getting a second opinion could be disastrous.

A common complaint is that physicians do not explain illness and treatment options in easily understood terms. There is often a mismatch between a patient’s and physician’s expectations and understanding.  Again, studies detail patients’ misunderstanding of common medical terms. When patients were tested for their understanding of words found in transcripts of physician-patient interviews a large variation in understanding occurred. While 98 percent of patients understood the health term vomit, only about one-third understood the word orally, 18% understood malignant and just 13 % the word terminal.  In this same study, the physicians thought they were actually switching to everyday language when communicating with patients.

Unfortunately those with low health literacy are less likely to ask questions of their physician. This is tragic. The people who need more help actually receive less. What can you do to become more health literate? Read and learn about  your health condition. Talk to other women with similar conditions. Talk to your doctor, nurse and other healthcare professionals. While at the doctor’s office, you can try the simple technique called:

Ask Me 3.  The program encourages patients to understand the answers to three questions:

“1. What is my main problem?
2. What do I need to do?
3. Why is it important for me to do this?”

Taking these three questions with you during a doctor’s appointment, writing down the answers and making sure you understand everything that is said to you are ways to make a difference. If you think that the appointment will bring bad news, take a friend or family member with you. Don’t leave the physician’s office confused. You have the right to know what is happening to your body.