Way To Go, America!

as one of the uninsured with cancer, i'd have to say this is one great article.



ATLANTA, Georgia (AP) -- Uninsured cancer patients are nearly twice as likely to die within five years as those with private coverage, according to the first national study of its kind and one that sheds light on troubling health care obstacles.

People without health insurance are less likely to get recommended cancer screening tests, the study also found, confirming earlier research. And when these patients' condition is finally diagnosed, their cancer is likely to have spread.
The research by scientists with the American Cancer Society offers important context for the national discussion about health care reform, experts say -- even though the uninsured are believed to account for just a fraction of U.S. cancer deaths. An Associated Press analysis suggests it is around 4 percent.
Those dealing with cancer and inadequate insurance weren't surprised by the findings.

"I would just like for something to be done to help someone else, so they don't have to go through what we went through," said Peggy Hicks, a Florida woman whose husband died in August from colon cancer.
Edward Hicks was uninsured, and a patchwork health care system delayed him from getting chemotherapy that some argue might have extended his life.
"He was so ill. And you're trying to get him help and you can't, you can't," said his 67-year-old widow.
Facing hard facts
The new research is being published in CA: A Cancer Journal for Clinicians, a cancer society publication. In an accompanying editorial, the American Cancer Society's president repeated the organization's call for action to fix holes in the health care safety net.
"The truth is that our national reluctance to face these facts is condemning thousands of people to die from cancer each year," Dr. Elmer Huerta wrote.
Hard numbers linking insurance status and cancer deaths are scarce, in part because death certificates don't say whether those who died were insured.
An Associated Press estimate -- based on hospital cancer deaths in 2005 gathered by the U.S. Agency for Healthcare Research and Quality information and other data -- suggests that at least 20,000 of the nation's 560,000 annual cancer deaths are uninsured when they die. Experts said that estimate sounds reasonable.
That's around 4 percent of the total cancer death toll. One reason is that most fatal cancers occur in people 65 or older -- an age group covered by the federal Medicare program. Another is that more than 80 percent of adults under 65 have some form of coverage, including private insurance or the Medicaid program for the poor, according to various estimates.
Some are enrolled in Medicaid or other programs after diagnosis, when the condition worsens and their finances erode. But such 11th-hour coverage can be too late; early detection is the key to catching many cancers before they've grown beyond control, experts said. Dr. Sanjay Gupta explains the study
"Insurance makes a big difference in how early you are detecting disease," said Ken Thorpe, an Emory University health policy researcher.
In the new study, researchers analyzed information from 1,500 U.S. hospitals that provide cancer care. They focused on nearly 600,000 adults under age 65 who first appeared in the database in 1999 and 2000 and who had either no insurance, private insurance or Medicaid.
Researchers then checked records for those patients for the five years following. They found those who were uninsured were 1.6 times more likely to die in five years than those with private insurance.
More specifically, 35 percent of uninsured patients had died at the end of five years, compared with 23 percent of privately insured patients.

Differences in survival rates
Earlier studies have also shown differences in cancer survival rates of the uninsured and insured, but they were limited to specific cancers and certain geographic areas.
The new findings are consistent across different racial groups. However, the fact that whites have better survival rates cannot be explained by insurance status alone, said Elizabeth Ward, the study's lead author.
The researchers were not able to tell whether the numbers were influenced by patients' education levels, or by other illnesses.
Experts said the study also hints at problems with quality of care after diagnosis: such as whether the patient got the appropriate operation from a high-quality surgeon, whether the tumor was thoroughly evaluated by a high-quality pathologist, and whether there was access to needed chemotherapy and radiation.
"The differences that we see in outcomes after people are diagnosed, even among those with early stage disease, suggests that problems with quality of care may be an important reason," said Dr. John Ayanian, professor of medicine and health care policy at Harvard Medical School. He didn't participate in the cancer society study.
The study makes an even stronger statement about the role insurance plays in the timing of screenings and how that can raise the likelihood of a late-stage diagnosis, experts said.
A Kaiser Family Foundation survey last year of 930 households that dealt with cancer found that more than one in four uninsured patients delayed treatment -- or decided not to get it -- because of the cost.
Such was the case of Edward Hicks.

The retired laborer, had surgery for colorectal cancer in 2005 and was thought to be clear of the disease. Chemotherapy was suggested after the surgery, but he didn't get it.
In February of this year, his wife grew worried when he lost energy and appetite. In April, he told her he felt a lump in his stomach

Hicks, who lived in Fort Meade, Florida, couldn't get an appointment with a specialist, but a family doctor checked him into a hospital and specialists saw him in late May. They said that he was terminal but that chemotherapy might extend his life a little, his wife said.
She was able to get donated chemotherapy drugs from a pharmaceutical company, but it took time to arrange the treatments, which didn't start until mid-June. Meanwhile, her husband's health deteriorated. In July, after just a few treatments, he stopped the chemo, saying it was too hard. He died on August 21, at age 64.

Friends and family told Peggy they believe he would have lived longer had he got chemo earlier, when he was stronger. She doesn't agonize over that, she said, trusting in God's will.
But the devil's in her mailbox -- she is facing a $21,000 hospital bill and other costs from his death.

Not Done Yet!

ahhh. december 19th was supposed to be an independence day of sorts for me, but of course, life had other plans.

a couple of weeks before, i felt really violently ill after treatments. i was shivering so hard that the whole bed would shake. i couldn't get warm, my skin felt tight, and my entire body hurt.

after massive amounts of fun fun scans from my doctor, we found out that my body had started rejecting the treatment. my organs were enlarged, and if i chose to finish the treatment, i would most certainly end up in the ICU.

going into this, i told them that my number one goal was to avoid hospitals at all costs. they scare the bejeebus out of me. the only good things that happen in a hospital are:

1. they make jello. there is always good in jello. and gelatin, too.
2. babies are born. this is good because they are not mine.

so what we ended up doing was giving me a sabbatical of sorts from radiation. i'm currently off of treatments until january. i go back on january 2nd for more scans, and from there we'll decide my treatment schedule. and, instead of 2 full strength treatments, they're going to break it up into 4 half treatments, so it hopefully won't be such a shock to my system.

i'm not entirely sure how this is all working, and i'm not entirely sure i want to know. i really trust that my doctors are doing all that they can for me. it's nice to say, "hey, doctor dude, i don't want to end up in a hospital" and then 8 weeks later have them remember that for themselves and take it into account.

Tis The Season...

many hospitals say that the first thing a juvenile cancer patient asks for in the hospital is a movie. the problem is, there is often little to no funding to provide entertainment extras.

kidflicks is a terrific organization that provides a movie library of 100 dvd's per hospital. if you have kids and they have "outgrown" their dvd's, or if you're just in the holiday spirit and want to give, purchase a dvd and send it to:

Kid Flicks/Barta
11755 Wilshire Blvd.
Los Angeles, CA 90025 #1450

provide your name and return address so they can send you a thank you/receipt.

i know one of my greatest refuges during this time has been to plop down and forget everything in front of a movie. let's make the same opportunity available to some of our sick kiddos.

more info is available on their website, http://kidflicks.org

Cancer Is Super Sexy

had my 6th treatment yesterday, which was pretty normal, as treatments go. i'm now one of the sick ones who can eat lunch while getting filled with radioactive fluid and blood. yay!

one of the yard supervisors at my work knows that i go directly to treatments on wednesdays, so she packed me a little lunch of lasagna (i love the school's lasagna, i swear) and a chinese chicken salad to take with me. so multicultural. and since they've been sticking my feet instead of my arms, i'm able to eat more easily.

the doctors also came in and talked to me a little bit. since i submit my food logs nightly via e-mail, they've had an up to date record of my nutrition, not to mention how often the food does NOT get digested.

most food i eat leaves my system from one end or another within an hour, so calorically and nutritionally, i am deficient. (i think mentally, too, but they said they weren't "THOSE" kinds of doctors. psh.)

so, despite my pleasantly plump appearance, and the fact that people see me eating pretty normally on a regular basis, i am malnourished. my anemia has not gotten any better, i'm getting two bags of blood a week. and i need to up the calories.

here is a clip of what the doctors sent me in an e-mail last night:

"Foods that might be good to eat are things like ice cream, instant breakfast, protein shakes, whole milk, peanut butter sandwiches, etc. These are things that pack the most calories for the punch, so you may absorb more calories before the food is purged. Also, iron rich foods such as dark leafy greens, lean red meat, and certain folate rich fruits (see attached list for more specifics.)"

they don't want me on an iron supplement because it may cause my digestive system to go the other way on me, and as much as i hate a constant running tap, i'd hate it even more if i were shut down.

also, they think that my body is rejecting the radiation treatment judging by how bad my shakes are getting. i guess it's good that my body recognizes that it's not normal to glow, but if it gets much worse, they may end my treatments early to avoid me ending up in the hospital. they're pretty confident that it wouldn't affect my overall status if they did that, so after next week's treatment we'll reconvene.

Fun Quotes

I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have troubles with me!
~Dr. Seuss


My veins are filled, once a week with a Neapolitan carpet cleaner distilled from the Adriatic and I am as bald as an egg. However I still get around and am mean to cats. ~John Cheever, letter to Philip Roth, 10 May 1982, published in The Letters of John Cheever, 1989, concerning his cancer and its treatment


Well even before she was diagnosed with the cancer, I would have said that she was a lot tougher than me and most guys would probably say that about their wives and it's probably true in most cases.
Brett Favre (tee hee, brettfavre.)

Everyone needs to be proactive and know the various warning signs of cancer. Early detection and research to make detection easier at earlier stages, along with the treatments needs, is still a must. I salute all those winning the battle.
Dennis Franz

It costs a lot of money to look this cheap.
Dolly Parton

I feel like I'm fighting a battle when I didn't start a war.
Dolly Parton

Insensitive

had my second transfusion yesterday, 2 bags of blood this time. i have one doctor who wants to put me on procrit, but the fda just came out with something saying that cancer related anemia drugs are more harm than good for a cancer patient.

i was told going into this that there would be a point where i would hit a wall. and i think i've hit it. not only physically, although i feel seasick nearly all of the time and a little over half of what i eat usually pays me back within an hour of consumption.

i'm also losing my hair, the bald patches are getting larger and it's all sort of...thinning.

if i thought i could afford a nice wig, i'd probably cut my hair and invest in one, but so far i've been able to get by with a collection of bandanas, scarves, and beanies.

the problem is, my coworkers can't seem to stop themselves from making fun of said headwear. now, i know i work at an elementary school and none of the staff really ever acts their age, but i don't appreciate being told that i look like a thug, or that dude from the simpsons, or whatever other pleasant metaphor they can dig up on a minutes notice. and they all laugh so snidely afterwards, congratulating themselves on their big joke.

the thing is, my cancer is (and has been) no secret. these people know what i'm going through. and though the fact that i'm an adult and should be able to ignore it has been brought up, it's not easy to be that thick skinned when i'm already going through so much.

i struggle with just how vain i am about my hair. i KNOW it's just hair. i KNOW it will grow back. but each time i look in the mirror and see what this disease has done to my body, i have a total "elephant man" moment and want to isolate myself.

i don't like having to cover my head whenever i go out. and it would be nice if some people could look into themselves and figure out a way to be supportive rather than insensitive.

Things That Make You Go "Ha-Ha"