Let them eat… garbage?

Just as there is more to me than simply being a person living with cancer, this blog is about more than cancer. It’s about my life: my joys, things that concern me. One of the things that is concerning me very much these days is poverty.

According to a recent report of the Organisation for Economic Cooperation and Development (OECD), the poverty rate in Israel has risen to almost 21% of the population, making it the most impoverished of the 34 countries considered “economically developed”, having overtaken (“undertaken”?) Mexico in that regard. It ranks fifth in income inequality (the gap between the richest people and the poorest), after the United States, Mexico, Chile and Turkey.

Reading the reports and thinking about different people I knew during my working life, I remembered one of the first posts in this blog, originally published on October 31st, 2011. I thought I’d repost it today.

 Notes:

The photos are from the road in front of my house in central Jerusalem.

There is a summary in English of the OECD findings about Israel at the HaAretz newspaper English site, here. 

 

 

 

Oh! God! That bread should be so dear,

And flesh and blood so cheap!  

(Thomas Hood in The Song of the Shirt)

 

Sack of bread (and trash) tied outside a rubbish bin.

There is a Jewish tradition that it is virtually a sin to throw away bread. Many people in Israel, at least here in Jerusalem, are very careful about putting leftover bread out in public instead of throwing it away.  There is good reason to believe that the underlying reason has to do with providing for the community’s poor, but no one I’ve asked has ever been able to find me a definitive source for this. Some people say they leave bread out “for the poor”, and others “to feed the birds”. I imagine that there are quite a few people who put their leftover bread outside because “that’s what we do”.

Josa Bivin talks about the custom in her article “Lechem – Bread” on the En Gedi Resource Center site. She writes:

The importance of sharing one’s bread with the poor has remained in the Jewish consciousness until today. Instead of dumping their bread along with the rest of their garbage into the garbage carts parked along the streets, they save the bread in plastic sacks and hang it from the metal projections on the sides of the carts. That way, the bread is potentially available to the poor.

She goes on to say that once she saw “a young, poorly dressed man” take some bread that had been left out this way. I’ve never seen anyone take it, and a person would have to be in desperate straits indeed to dig the bread out of the trash bag I saw on my street this afternoon.

If you really wanted to feed the poor, wouldn’t it be more straightforward to use the day-old bread for toast or croutons or bread pudding? Then you could give the money you save by not buying bread the next day to the local soup kitchen that provides nourishing meals free of charge to anyone who needs them.

Even if someone is desperate enough to dig a piece of bread out of that rubbish, what is the cost to their dignity? What does it say about a society that puts food for the poor in a bag tied to the rubbish bin? Not only is the poor person who has to feed himself or his family debased, but so is the giver. There is no dignity in this transaction for anyone.

At least it doesn’t go completely to waste.

Breast Surgery News

With thanks to Dr. Deanna Attai, a California breast surgeon and the new  Secretary-Treasurer and member of the Executive Committee of The American Society of Breast Surgeons, who posted this on her Facebook page, I’d like to draw your attention to this article in the Seattle Times, by Marilynn Marchione, AP Chief Medical Writer:

Women have new options for breast cancer surgery

Treating breast cancer almost always involves surgery, and for years the choice was just having the lump or the whole breast removed. Now, new approaches are dramatically changing the way these operations are done, giving women more options, faster treatment, smaller scars, fewer long-term side effects and better cosmetic results.

Please read the rest of the article here.

I hate my cancer body!

Okay, I got used to the surgical scars across my chest and under my arm. I got used to the radiation burn down the middle of my chest. I got used to the weakness in my left arm after surgery. I got used to my lopsided silhouette and to none of my clothes fitting properly, even with that stupid breast prosthesis that never looks right. I’m used to all that by now.

What I hate is what is happening on the inside of my body–and I’m not even talking about the tumors per se, or the pain. It’s the invisible erosion of my physical self. The white blood cells that have been destroyed–apparently forever–by chemotherapy. The exhaustion after minor exertion. The lack of appetite. The inability to sustain even mild exercise for more than ten minutes, if that.

What brought this on? Changing my bed linen. I pulled the bed out from the wall and felt a pang of guilt because I can’t wash the floor under my bed as often as the rest of the floor is swept and washed. (I don’t do it myself any more, and there is a limit to what I can ask my underpaid household helper to do.) I felt so bad that I took a picture and texted it to a friend for a reality check. The answer came back “In this picture it actually looks clean.” I accept that, but I still know that it is not as clean as my formerly houseproud self would have had it.

So on to changing the bed linen. Pull the bed out for easy access, lift the bottom of the mattress on to the footboard. Take off the old sheets, sit down for a moment to catch my breath. Put on the clean bottom sheet, slide the mattress back down. Sit down again to breathe and then get up to spread the top sheet. Sit down to put clean pillow cases on two pillows, then get up to arrange the pillows on the bed. Decide not to sit down yet, push the bed back into the corner.

I sat down again, feeling dizzy and out of breath. Took my pulse: 114 beats per minute. That is actually within the bottom range of aerobic exercise for me. From changing my bed! I really, really hate this. I was never a triathlete or anything of the sort, but I was reasonably fit. I enjoyed urban hiking and riding my exercise bike “long distance”. I feel diminished, humiliated.

It is hard to separate the ravages of cancer from the effects of normal aging, but I am only fifty-eight years old, not seventy. My eyes have gotten so bad that I can no longer do the fine lacemaking that I have loved for so long. My hands have become weak and unsteady, so it is even difficult for me to knit, so that when I use the computer for writing or for doing the translations that are my livelihood  I often have to use dictation software because I can no longer type as quickly or accurately as I used to.

There is much in my life for which I am sincerely grateful, not least the fact that I am still alive. I am still committed to finding a modus vivendi with my cancer, rather than putting my energy into battling it. That doesn’t mean that I can’t hate cancer and everything it has done to me. And that’s where I’m at today.

The Komen Organization in Numbers and Words

Figure 1. Total expenses of the Komen organization for the year ending 31 March 2012.

I love the Internet! With thanks to my friend GG, a stellar webcomber, I have been spending the last couple of days studying the most recent independent audit of the Susan G. Komen Breast Cancer Foundation, Inc. The audit is available to all as a PDF at that link.

First, the numbers

The Komen financial year runs from the first of April through March thirty-first. The most recent independently audited annual financial statement dates from March 31, 2012, and this post is based on those numbers.(*)

Figure 2. Gross breakdown of Total Expenses from Figure 1.

The good news first. Komen spends a relatively small portion of income on support services–about 19% of total expenses(the blue slice of the pie at the left). These support services expenses consist of fund-raising costs ($52,118,804 or 69%) and general/administrative costs ($23,064,504 or 31%).

The largest portion of Komen income, about 81%, is very appropriately spent on program expenses (the green slice). I am particularly interested in taking a closer look at how that $318,281,722 is spent.

Figure 3. Breakdown of program expenses.

There are four categories of program expenses: Research (21% of total program expenses), Public Health Education (44%), Screening (16%) and Treatment Services (8%). The pie chart at the right shows the breakdown.

The lion’s share, of course, is spent on “public health education”. I assume this means awareness campaigns. About a fifth of program expenses are invested in research, approximately the same amount in health screen and treatment services.

Now the words

The  Komen organization was founded in 1982. At that time it made enormous sense to make massive investment in public education and awareness, to dispel the fear that surrounded the word “cancer”. Young people today would have trouble understanding how terrifying the illness was; the word was rarely even pronounced aloud. People were too frightened to examine themselves and sometimes even to go to a doctor if they suspected something. After all, the reasoning went. It’s a death sentence whether I get treated or not.

So much has changed in the more than thirty years since that time. Cancer is now seen as a serious and treatable illness, rather than a death knell, and even metastatic cancer is approached as a chronic disease. Most women in the West have been taught about breast self-examination and breast exams are a regular part of the preventative medicine protocols of hospitals, clinics and insurers.

Moreover, today’s medical thinking and standard of practice is rethinking its approach to mammography, moving toward starting later and repeating less frequently in most cases. The American Cancer Society’s recommendations now call for:

• Yearly mammograms are recommended starting at age 40 and continuing for as long as a woman is in good health
• Clinical breast exam (CBE) about every 3 years for women in their 20s and 30s and every year for women 40 and over
• Women should know how their breasts normally look and feel and report any breast change promptly to their health care provider. Breast self-exam (BSE) is an option for women starting in their 20s.

Is the Komen mission still relevant in 2013?

I’d prefer to answer a slightly different question. Do we still need a large, well-known breast cancer charity in 2013?

Yes, of course. But as the world has changed since 1982, I suggest that the Komen organization’s mission should change. In a country where fewer and fewer people have access and the means to pay for medical care, I suggest that Komen is well placed to increase the proportion of income spent on treatment services. Perhaps individual treatment grants or matching funds or helping to pay for the operation of breast clinics could be considered.

I suggest that more of the organization’s income should be invested in research, both clinical research and basic research. The more we know about cancer, the better equipped we will be to treat it, perhaps even prevent it. I don’t have a personal stake in this; today’s research is not going to benefit me. But think of the generations it could help!

My proposal, then, would be more of a three-piece pie: a third of program expenses to public health education, a third to research and a third to treatment services. What do you think?

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(*)The pie charts were made with the free Create-A-Graph tool available in the Kids’ Zone of the American National Center for Education Statistics.

Discrepancies in totals are due to rounding off or to my own arithmetic incompetence. The original figures are can be seen at the link to the independent audit in the first paragraph of this post. I welcome comment and correction.

“Metastatic work is a waste of time.”

With thanks to Nancy Stordahl of Nancy’s Point for posting it on Facebook, I’d like to draw everyone’s attention to a spot-on article on Salon: The ultimate cancer taboo: Sometimes it kills you by Mary Elizabeth Williams.

If anyone wonders why people with metastatic cancer sometimes (often) feel like the red-headed stepchildren of the cancer world (no offense intended to redheads or stepchildren), this article will make it clear.

Contemporary cancer gets couched in the language of cheerleaders. Even a generation ago, the mere word “cancer” seemed a certain death sentence; today, in contrast, it’s an opportunity to talk about battles and fights and hope. It’s something to be bravely dealt with – having cancer automatically designates a person a “warrior.” The disease is then referred to only at occasional “awareness” opportunities, preferably with a tasteful ribbon.

But people with metastatic cancer don’t follow the tidy, cheerful narrative. They don’t necessarily fit the inspirational survivor mold. And so they’re ignored.

So begins the article. She continues with some eye-opening figures and quotes Danny Welch, chairman of the University of Kansas Cancer Center, who told Peggy Orenstein: “A lot of people are under the notion that metastatic work is a waste of time.”

Let me tell you how I heard that.

Premise: Research into the causes and potential treatment of metastatic disease could lead to people like me living longer.

Premise: Such research, a lot of people think, is a waste of time.

Conclusion: A longer life for people like me is a waste of time.

Yes, I do take it personally. Wouldn’t you?

Williams goes on to talk about her own experience with Stage IV melanoma and that of Lisa Bonchek Adams, a well-known breast cancer blogger, and offers this very important suggestion:

So if you’ve ever considered whipping out the talk about miracles or just keeping a positive attitude or some other unhelpful tack in a transparent attempt to keep your own terror of death at bay, that’s actually a pretty crappy thing to lay on a person with a serious disease. Please don’t do that.

This is not a long article, and it is well worth reading. I’ve only skimmed a few of the high points. Please do click on the link (here it is again) and read it.

I’ll end by making my own the words with which Williams closes her article: “Yes… I’m still right here.”

A Painted House by John Grisham

A Painted House by John Grisham

My rating: 4 of 5 stars

Not a legal thriller, which I think is a departure for Grisham. The novel, reportedly inspired by his own childhood, takes place in Arkansas in 1952. (Of note, Grisham (like me) was born in 1955.) The story is narrated by Luke Chandler, a seven-year-old boy, the son of tenant cotton farmers. He wonderfully evokes rural 1952: inter-church baseball games (Baptists against Methodists), church sermons, the traveling carnival – but most of all the social strata and relationships. I don’t remember how insightful I was at seven, but sometimes Luke’s comments seem more like those of a young teen. Maybe kids who get off school to pick the cotton mature faster, though.

The story revolves around the relationships, liaisons and quarrels among Luke’s family (tenant farmers), a family of sharecroppers whose teenage daughter is pregnant by Luke’s young uncle, and the itinerant “hands” who camp out on the farm for a few weeks during the picking season: a family of “hill people” from the Ozarks and a work gang of Mexicans brought in by truck. With the impunity of childhood, Luke moves freely among these groups and sees much.

I listened to a recording of A Painted House with narration by Peter Marinker. His reading was too breathy for my taste, but the story was so gripping that it didn’t matter.

My recommendation: Excellent. Definitely worth a read or listen.

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In the Land of Invisible Women by Qanta A. Ahmed

In the Land of Invisible Women: A Female Doctor’s Journey in the Saudi Kingdom by Qanta A. Ahmed

My rating: 2 of 5 stars

The writing ranges from indifferent to awkward, but that is not the only reason I rate this books as merely “ok”. It had the potential to be so much more than it is.

Dr. Qanta A. Ahmed is capable of close observation–no critical care physician can lack this ability–and some of her descriptions are very closely observed, indeed. It is a shame that these are mostly limited to the physical appearance of the people she meets and of their clothing, homes and cars.

Yet we cannot call Ahmed shallow because the religious experience she underwent in the Kingdom was clearly deeply felt. I am disappointed that she did not spend more time exploring it and less time looking for well-worn metaphors to describe it.

The main problem with In the Land of Invisible Women, in my opinion, is that it never quite seems to decide what kind of book it is. Is it the description of the author’s religious itinerary? Then why leave that almost exclusively to the section on her Haj (pilgrimage to Mecca)? Is it the story of a Western-trained double-boarded physician who happens to be a woman practicing in the very different and restrictive conditions experienced by female physicians in the Kingdom? Then tell us more about that.

Is this a book about Saudi culture? Then spend less time on describing cars, jewelry and clothing and more time on behavior, attitudes, laws and social expectations. Is it a book about the history of Wahabi extremism in Saudia? Then write it as a history and don’t try to squeeze it in as background in artificial-sounding conversations.

The main problem I found with this book is its lack of focus. There is so much potential here for a riveting memoir or a fascinating analysis. Ahmed sold herself short by taking the easy way out.

This book will be particularly interesting to people with little or no knowledge of Islam, people who don’t know many Muslims. Think of it as a long, chatty letter from the friend of a friend and you won’t be as disappointed as I was.

Not a bad book, just not as good as it might have been.

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