Guest post: How breast cancer survivors transcend Middle East conflict

by Ruth Ebenstein
 Ruth Ebenstein, Oak Park Temple, July 12, 2015              photo by Matt Baron
 
 
 

I never thought something so good would come out of something so bad.
When I was diagnosed with breast cancer at 42 while nursing my baby, I thought, I'm going to die. I had buried two other friends to the disease. Was there any other trajectory?
The pathology report on the lymph nodes scooped out of my armpit confirmed that the cancer had NOT spread. Though blessed, I lumbered around, all dark and down, in my apartment in Jerusalem. While my lumpectomy scars were still healing, I gritted my teeth and walked my fingers up the wall, stretching the scar tissue under my armpit.
Then, on a rainy Wednesday in January some four and a half years ago, I took a break from my exercises to check my email. There, I found a query that radiated a glint of light.
"Do you want to join an Israeli-Palestinian breast cancer support group?"
Walking into the first meeting, I wondered, Was something good going to come out of cancer?
The answer turned out to be No. Something wonderful was going to come out of cancer: friendship that grew to love, between me and Ibtisam Erekat, a bold, captivating Muslim Palestinian woman from Abu Dis, whose home was about fifteen miles away from mine.


                  Ibtisam & Ruth
 

Now we are like sisters. our feelings of family have extended to our kin. Our children play together, and we've befriended each other's siblings and parents. All this, even though we live on opposite sides of the concrete separation wall and a checkpoint that separate Israel and Palestine.
Over the next two weeks, I will share this story--of transcending the divide, of discovering hope, peace and love in cancer-- in Boston and Detroit.
Wednesday, July 15, 6:30 p.m. at Misselwood Estate, Beverly, Massachusetts, sponsored by CJP's Women's Philanthropy
Monday, July 20, 12 p.m. at Temple Israel, West Bloomfield, Michigan
Thursday, July 23, 7 p.m., at Isaac Agree Downtown Synagogue, sponsored by Detroit Interfaith Outreach Network
Come join me! I promise to feed your heart and your mind.
***
 
 You can read more of Ruth’s story here:
About a trip that a delegation of her group took to Bosnia and Herzegovina to meet local women who are also survivors and look past their ethnic and religious differences to support each other, in Tablet.  http://www.tabletmag.com/jewish-life-and-religion/113749/brought-together-by-cancer
 About a family visit to East Jerusalem, in the Atlantic.
She is writing a memoir called  Ibtisam and I: An unexpected friendship across the Israeli-Palestinian divide (www.laughthroughbreastcancer.com).
 And, you can "like" the Facebook page that she’s set up for her memoir-in-progress. 
For more info, check out her website.

Bloody Blood Cancer Bitch: Jakafi hath arrived/Cancer Bitch hath, too, in Tampa.

My hematologist filled out the forms and Walgreens filled out the forms and on Monday L rode his bike to Fancy Hospital Walgreens and picked up the goods. Today is day 2 on Jakafi and I just arrived, Jakafi in hand, in Tampa. I'm doing a craft seminar and reading today at 4pm, Reeves Theater in Vaughn Center, University of Tampa, for the low-rez MFA program. Free to the public.

OMG

OMG OMG. There is a goddess who watches over people with rare chronic blood cancers. Co-pay for a month's worth of Jakafi is two sawbucks, or one Andrew "I killed Native Americans" Jackson, or 2000 pennies. Quite doable and $10,080 less than I thought it would be!
 
Trail of Tears, brought to you by the US government/Andrew Jackson

Sticker shock shock shock

Jakafi costs


$11,000 for a month's supply! My insurance company is supposed to call me. We shall see.

Jakafi, will you save me?

 
 
Today L went w/ me to the hematologist's because I wanted him to be around for the momentous decision. We recounted my itchiness and the doctor said she thought Jakafi would help. It's usually prescribed for people with polycythemia vera who have enlarged spleens. My spleen is a very nice size, unobtrusive. But it is supposed to work on itches. Or pruritus, its proper name. Sounds more serious. The pruritis has made me cautious, given me more of an excuse not to exercise, since sometimes exercise in warm weather can lead to almost unbearable pruritis. The etymology of the word is not very interesting at first--it comes from the Latin pruritus, past participle of prurire "to itch"--but then you can go to prurient, which is related, and it gets lots more interesting. Prurient originally meant "having an itching desire" (1650s), and then became more louche--especially "lascivious, lewd," (1746),  The Oxford English Dictionary tells us that pruritus means "Itching of the skin or other surface. Also fig.: a strong desire or craving." As in the line surely you've heard at Whole Foods, "I sure have a pruritus for that spirulina!" Or the anonymous phone call I got recently: "I've got a pruritus for you that just won't quit." I almost responded, "Then let him out!" the way I do when they ask if I've got Prince Albert in a can. Glad I didn't.

The Melancholic, according to the system of four humors:
  • Humor: Black Bile
  • Element: Earth
  • Season: Winter
  • Age: Old Age
  • Qualities: Cold & Dry
  • Organ: Spleen
  • Planet: Saturn

 by Durer

 


Bloody, Bloody Cancer Bitch Comes Out

 
...which is not exactly the topic at hand, but somewhere in the ballpark...closer than Bloody Bloody Andrew Jackson...

Dear folks out there in Cancerbitchlandia,
I'm in a rowing group for breast cancer survivors, so it's selective, as in you must have that one basic criterion, but it's unselective because once you show up they can't kick you out for your athletic performance or lack of. I have recounted some of my problems with polycythemia vera. It's especially annoying when I'm in a warm place and I'm exercising, so my blood is running around and stirring up the histamine (or something along those lines) and I get very hot and very itchy or sometimes feel like someone is sticking pins in me:
Until very recently I would get really upset because I didn't stop before this happened, and when it happened I felt so embarrassed and angry and alien. But. I decided to email ROW members. This is what I wrote:
Dear everyone,
Some of you know about my weird blood disease from reading my rant on Facebook. I thought since it affects how I am at practice, I should let y'all know about it and me.
I have polycythemia vera, which means I have too many red blood cells and platelets. It is caused by a gene mutation called Jak2.
I take oral chemo, which doesn't cause side effects (so far). Other people get enlarged spleens from the disease, which is a chronic cancer. Luckily, my spleen is a good size, but I have severe itching. In fact, itching after a shower is one of the symptoms that people notice before they're diagnosed. The disease causes histamine to go crazy. Thus if I had no treatment at all, I would itch/feel like someone was pricking me with pins/ constantly.
To combat the itch, I take a 24-hour antihistamine once a day, and generic Atarax from 3 to 6 times a day. I drink coffee (which I like) to keep awake. When it's really bad, I take Emend, off-label use. I try not to take it much because it costs $7/pill and insurance pays for a limited supply, and no one's studied the long term use of it. In fact, it is not intended for long term use. I also get phototherapy two to three times a week. In winter I'm usually good. The problem is that whenever I'm warm I start itching more. So if I'm on the erg and it's warm and I'm warm I might have to slow down before I get so hot that I start itching uncontrollably. I've always been very allergic, so for 50 years I would respond to mold and pollen by getting asthma. (I take a bunch of meds for that, too.) But with polycythemia vera, my skin reacts to allergens, which means I itch and itch. And get asthma/stuffy nose as well. PV also causes night sweats and day sweats, so that it compounds hot flashes.
So if you see me hugging the air conditioner, or leaving a place...or slowing down when everyone else is pounding away at the ergs, it's because of polycythemia vera.
There's one new drug that I might start, but it's for extreme cases. 
It's all disturbing and confusing, though I've gotten to the point mostly where I no longer freak out with the severe itching, or start weeping and feeling terribly sorry for myself and alienated from everyone and the world at large.
So that's that.

Good news, bad news

If you are under 50, skip this; don't worry your pretty little head.
Good news: The two polyps the doc removed yesterday are adenomas, pre-cancerous, benign.
Bad news: I need another colonoscopy in two years, same preparation (2-1/2 days of liquid diet, plus the nasty stuff to drink). Which falls in the "If we can put a man on the moon" category: Then why can't we figure out a less yucky way to investigate the colon?

Is this a cave painting or a stranger's polyp?