But I date myself...


The clock radio went off this morning and soon a notice came on about an upcoming special on the life of Daniel Schorr, who died last week at 93. I'd promised myself I would write four pages when I got up so I rushed to my office across the hall, and used a staple-puller to open up a cassette tape. I was about to put it in the boom box to record the special when I realized: I can listen to this online later.

What century was I still living in?

My only excuse is that I'd just woken up.

I did get bits of the special, which is worth listening to. Find the link here to Dan Schorr Memorial Special. I would love to live as long and work as long and be as productive and honorable and wise as Schorr.

The drug you can never quit


My dear friend D read about my nausea when I ran out of Effexor, and sent me this helpful link to Crazy Meds. CM lists: Effexor's Cons: For many people Effexor XR has the absolute worst discontinuation syndrome of an antidepressant. Effexor (venlafaxine hydrochloride) is a medication people utterly loathe to have taken. It is not uncommon for someone to fire doctors during or immediately after they quit taking Effexor XR(venlafaxine hydrochloride).


I'm trying to remember why I switched from Cymbalta. Oh, well helpful Crazy Meds is reassuring on this point: It appears as if the discontinuation syndrome for Cymbalta (duloxetine hydrochloride) is just as harsh as that of Effexor (venlafaxine) for many people. In case you're wondering what Cymbalta is for, Crazy Meds tells you that, too, in technical language: Major Depressive Disorder (i.e. feeling depressed.as.fuck or like Whale Shit at the Bottom of the Ocean) - approved 4 August, 2004.
Diabetic Peripheral Neuropathic Pain - approved 7 September 2004.


And if you happen to type the URL incorrectly, you get this very technical notice: The file you were looking for is just an illusion created by the devil.

As are most things.

Cooling from a meltdown

[or heating up together]


Meltdown is the topic of a blog carnival sponsored by Chronic Babe, so if you go there after July 27, you'll have access to lots of cooldown tips.

For Cancer Bitch, a meltdown means feeling hopeless and helpless, out of control. It's easy to feel out of control when your body has started acting badly, and when professionals are delineating the ways your body is doing that bad thing to you, using words you've never heard before, and offering treatment that might be painful, expensive, confusing, inconvenient, lonely, messy, experimental and/or detrimental to your health in the long run.

What I've found to work well: Cry. Talk. Write. Find something cool and soothing to eat, such as frozen yogurt. And yes, make sure that the milk used does not have bovine growth hormones. Cry a little more because: you live in a world where we give hormones to cows, you have to be vigilant in order to get dairy without the hormones, in Europe it's banned, and the hormones may be linked to estrogen-positive breast cancer, and extrapolating, what else in our food, water and air supply is detrimental to the health of the planet?

Then link up with an organization that works on these issues, because they don't feel hopeless. Acknowledge that that's hard, especially if you're feeling faint, are in pain, and have been handed a death sentence.

[What would Mother Jones do?]

Mother Jones (the person who inspired the founders of the magazine) was born Mary Harris in Ireland in 1837, and immigrated to Canada and then the US. In 1867 her husband and four children died of yellow fever in Memphis. She moved to Chicago, where her home and dressmaking shop burned in the Chicago Fire.

By her 50s she was a radical, working mostly with mineworkers. In 1903 she led a children's march fom Pennsylvania to New York to protest child labor. She helped found the Industrial Workers of the World (IWW, the "Wobblies").

She's buried in Downstate Illinois.

If you're able, after your meltdown, you might want to heat up, as the IWW says, and help fan the flames of discontent.
Check out the research/activist groups such as: Breast Cancer Action; Collaborative on Health and the Environment; Our Bodies, Our Blog; Organic Consumers Assn. Feel free to list your recommended organizations and meltdown tips in Comments.


[Order your IWW songbook for Labor Day. Disclaimer: Cancer Bitch does not endorse all stands/actions taken by IWW.]

Don't mourn...organize!--Joe Hill

Surprise, surprise

[Smile when you smash that breast!]

OK, I have to admit that I'm late with this news. I found it as I was filing away a page from the Tribune about what your greenest options are re: shopping bags, diapers, coffee holders and the like. So this news is late, and it states the obvious. But it's always nice to have your world view or Weltanschauung validated, as long as you can forget that these are real people involved who are suffering. Oh, but we shouldn't forget.

The Centers for Disease Control and Prevention released stats July 6 on breast and colon cancer screenings among people age 50-75--or middle age, according to my calculations. Among the findings:
-People with health insurance were more likely to get screened than those without.
-Minorities were less likely to have screenings. American Indian and Alaska Native women were least likely to get mammograms.
-Women with less than a high school education and women who were low income were less likely than others to get mammograms.

Interestingly, the Tribune gave the story seven lines and two charts, accentuating the positive: Screenings rise for 2 cancers. It's odd, though: I couldn't find the original story, which was from Reuters, online. I found a longer AP story on the Trib's web site. That one mentioned the variables of education and insurance, but not race. It emphasized that more people are getting tested for colon cancer, but the same percentage of women were getting mammograms in 2008 as they did in 2002. The New York Times ran a piece the next week based on a CDC update, emphasizing the negative: Gaps Found in Breast Cancer Testing, noting that equal rates of black and white women were getting mammograms, though fewer Native Americans. The Times did not mention income disparity .

This all goes along with my theory that if everyone were rich, we'd be much better off. Rich people are thinner and healthier and usually more educated. Our obesity problem would decline and we'd all fit into our airplane seats.

Magic mushrooms & no magic bullet for patient communication


Johns Hopkins tells us that researchers are looking at illegal drugs to help people with OCD (obsessive-compulsive disorder), PTSD (post-traumatic stress disorder), anxiety and depression--anxiety being Cancer Bitch's major bugbear. MDMA aka Ecstacy, says Johns Hopkins health reports, also increases brain levels of oxytocin, which arouses feelings of trust and confidence that can be particularly helpful during psychotherapy. The idea is that a dose of the drug, taken before a talk therapy session, may help individuals with PTSD reduce their fear and anxiety long enough to discuss and process the events that traumatized them. Ketamine aka Special K, is an FDA-approved general anesthetic that is being studied as a fast-acting antidepressant. Ketamine binds to receptors in the brain and blocks the neurotransmitter glutamate that normally activates neurons, thus producing a calming effect.

I haven't tried any of the above, though in high school, the guys in Future Farmers of America were allegedly growing the mushrooms on their school farm. It was the '70s, after all.

You can participate in clinical trials of these drugs (or a placebo)if you meet the criteria. For example, New York University is administering one dose of psilocybin to anxious people with life threatening, advanced, or recurrent cancer. If you're in Baltimore, check a study out here.

University of Rochester is studying whether topical amitriptyline and ketamine cream are effective in treating neuropathy caused by chemo.

There are tons of clinical trials and they can save or at least improve lives, even your own. For example, in researchers in Downstate Illinois are studying how best to get breast cancer survivors to exercise. There's another one on whether flaxseed is helpful in combatting hot flashes. My favorite is one at Fancy Hospital on communication with patients. A major goal: •Determine patients' health communication needs during the first 6 months of care by interviewing patients with breast cancer (as well as their families, caregivers, and healthcare teams) and observing interactions between patients and oncologists throughout the trajectory of care from initial diagnosis through the initial treatment course.

This involves video and extensive interviews. What should also be done:

* HIRE ENOUGH ONCOLOGISTS & STAFF SO THAT THE WAIT TIME IS NOT TWO HOURS FOR CHEMO OR ONCOLOGY APPOINTMENTS.

* REQUIRE DOCTORS TO READ PATIENTS' CHARTS BEFORE ENTERING THE EXAMINATION ROOM.

* REQUIRE DOCTORS TO SIT DOWN DURING PATIENT APPOINTMENTS.

* TRAIN DOCTORS (STARTING WITH MEDICAL STUDENTS) WITH EXTENSIVE ROLE-PLAYING EXERCISES.

* INVITE JEROME GROOPMAN TO TALK TO ALL STAFF ABOUT COMMUNICATION WITH PATIENTS AND FOLLOW WITH SMALL MIXED (SEE POINT BELOW ABOUT MIXING STAFF) DISCUSSION GROUPS ON RELATING AND COMMUNICATING WITH PATIENTS.

* CONTINUE ATTEMPTS TO LOCATE/ENCOURAGE HUMANITY IN DOCTORS AND TO BREAK DOWN THE HOSPITAL HIERARCHY (BASED ON RANK, EDUCATION, CLASS AND MOST OF ALL RACE) BY HOLDING WRITING WORKSHOPS, BOOK AND OTHER DISCUSSION GROUPS, IMPROV & EXERCISE CLASSES AND OTHER ACTIVITIES THAT INCLUDE EVERYONE, FROM IMPORTANT & SELF-IMPORTANT DOCTORS TO CLERICAL STAFF.


* HIRE HOSPITAL CLOWNS TO EASE TENSION & BRAINSTORM WITH THEM ABOUT IDEAS TO EASE ANXIETY AND COMMUNICATION. IT'S HARD TO LISTEN WELL WHEN YOU'RE TENSE.



To search for clinical trials, go here.

More confusion but you'd think there wouldn't be


[by the immortal Posada]


I've been getting mammograms every six months for the remaining breast. Today I went again, and the procedure is that after the mammogram, you're led to the radiology lair and sit in the radiologist's office and talk to her. The radiologist I saw today was seemed to be in her 30s and spoke without pretense. She was happy because the images showed that the (micro)calcifications, which are tiny specks of calcium that could indicate cancer but probably don't, have looked the same in all the mammograms in the past few years. So that means that nothing has changed. OK, it means that probably nothing has changed because you can't see every little thing that's going on.

I've had calcifications for a while--for years, in fact, before I was diagnosed. So I asked her if she could look at the calcifications in my cancer mammograms and compare them to the pre-cancer mammograms. My idea was that she could say, Aha, these calcifications from 2005 developed into the cancer of 2006/7, you can see that in retrospect. And then that would shed light on the specks of July 2010.

So she went through the images and arranged them on her light board and looked through her magic binoculars to see them better and said you couldn't learn anything from the comparison.It seems that the calcifications appeared next to the tumors (or masses, as they say in the biz) but did not turn into them. She also said she had other customers waiting and indicated the folders on her desk. OK, she said patients, not customers.

She told me if I was really worried that I could have a biopsy but it wasn't necessary or that I could come in for a mammogram in six months instead of a year.

I had asked her to do this extra digging because I had this idea of calcium specks as little seeds that could turn into cancer, but that seems to be wrong. Dr. Susan Love tells us: Microcalcifications, as we call these specks, are usually the result of normal wear and tear on your breasts, but 20 percent of the time they're an indication of cancer or of the precancer ductal carcinoma in situ (DCIS). If the film shows only a few very tiny specks arranged in tight clusters, then it's more likely to be something wrong that can fit into the tiny ducts. If the specks are scattered and larger in size, they're more likely to be benign and harmless.

The California Pacific Medical Center tells us: "Benign" calcifications in the breast do not become malignant. Malignant calcifications are malignant from the time they first appear. When the radiologist assigns calcifications to a "probably benign" category, the risk of malignancy is considered to be less than 2%.

My specks are scattered and the radiologist didn't seem bothered by them. She gave me a piece of paper showing the mammogram results as "benign appearing (not malignant) stable." The surgeon smiled at the results when she popped in (standing the whole time). In all everyone seemed happy and cheery with the mammograms, just stopping short of congratulating me on the films' unchanged nature, the way they did when we found out that the cancer hadn't crept up into my lymph nodes.

Aw shucks, it was nothing.

Still, nobody knows anything for sure sure, and though the physician's assistant said it was great that the cancer hadn't come back after 3.5 years, when I asked him about estrogen-sensitive tumors like I had, he said that they're usually slow-growing and are more likely to come back after 15 or 20 years than right away. I was thinking of CJ, who died last summer after having had a mastectomy and no chemo. She said that she thought she should have had chemo. She did have some good years, I think about eight, and then a couple of bad ones at the end, with the cancer growing in her brain and bones. She was working as long as she could, as a school librarian, even when she was nearly blind.

It's fine to laugh at this stage 2-a breast cancer, just garden variety, no big deal, I didn't need that breast anyway, and to read about someone with stage four whose bones were cracking at the end of her book (The Red Devil) and then to find out, hey, she just wrote a book about spending a year in India, but the cancer--even though we say its name now, not just Big C, or that someone's Sick, or Very Sick--it is a death sentence, for some people, some of the time, we just don't have all the particulars in advance.

Can cleaning products cause breast cancer?



Yes, maybe, sort of. Could be--according to a study just published in Environmental Health.

Researchers conducted phone interviews in 1999 and 2000 with 787 women who were diagnosed with breast cancer between 1988 and 1995. They also interviewed 721 women in a control group. The interviewers asked about the women's use of cleaning products and pesticides, about their beliefs in the causes of their cancer and about family history. They found that women with breast cancer were twice as likely than the control group to have used air freshener and to have been exposed to more cleaning products.

However, the scientists cautioned, all the information came from women recalling their use of cleaning products, and could be biased. The study found no link between pesticide use and breast cancer.

Here's a link to the abstract, which will in turn lead to the whole study, which was submitted in 2010.

So, should the study have been done, considering that all the information relied on women's memories?

In the meantime, using simple products is better for the environment. But alas, when we buy the hippie-recycled-feel-good products, we find they don't work as well as the strong-smelling stuff with ammonia and bleach.

[Elbow grease works best.]

[NYT photo; patient claims surgery was unnecessary]

The New York Times tells us that that 17 percent of D.C.I.S. cases identified by a commonly used needle biopsy may be misdiagnosed. D.C.I.S. is ductal carcinoma in situ, aka Stage O cancer. The Times interviews women who had surgery (ranging up to a double mastectomy) who later found out they didn't have cancer after all.

I've been a critic of Susan B. Komen for the Cure, but it turns out that Komen has studied this. According to the Times, Komen reported in 2006 that in 90,000 cases, women who receive a diagnosis of D.C.I.S. or invasive breast cancer either did not have the disease or their pathologist made another error that resulted in incorrect treatment.

So--if you're diagnosed with Stage 0, get another opinion. So you won't need a lawyer later.

Single and want to be on TV?

Want to tell your cancer story on TV? This is a query from SIngle-Woman.tv,

Query:

Looking for stories from men and women who were single when they
were diagnosed with cancer? Submissions should include brief
summary of the following: Type of Cancer. Who was your network?
How did you manage finances? How did you diagnosis, treatment
and recovery impact your life? Please include photo.

Reply to: query-g50@helpareporter.com

Deadline: 07:00 PM EST - 16 July