Sunday, March 29, 2009

If you give a tween a pancake....


You remember If You Give A Pig A Pancake, right?

"If you give a pig a pancake, she'll want some syrup to go with it. You'll give her some of your favorite maple syrup. She'll probably get all sticky, so she'll want to take a bath."

Today's Sunday Globe Magazine had a column that I found hysterical.

It's about giving an 11 year old a cell phone.

Here is my favorite part:

Give a girl a cellphone, she'll lose it and want an iPhone. Give her the iPhone, she'll want a matching iMac. Give her the iMac, she'll want a Mercedes-Benz SLR McLaren ($495,000).

This also holds true for other requests, such as: If you tell your daughter she can pierce her ears when she's 12, she'll talk you down to 11. When the ears get pierced at 11, younger sis will bargain for 10. The 11-year-old will want to pierce other body parts, get a tattoo, wear Apple Bottom jeans and the boots with the fur, and have the whole bar looking at her. Soon, she'll be dancing around a pole at a gentleman's club. It's just a bad idea.

Parenting is hard, isn't it? It's definitely a slippery slope. But pole dancing? I'm so glad I don't have girls.

Disease or cure?

I've been doing some research. The medication I will be getting to suppress my ovaries (triptorelin) is also used in the treatment of premature puberty, as a treatment for prostate cancer, and to lower the sex drive of pedophiliacs and other sex criminals. In men, it effectively causes chemical castration. Lovely.

The medication I may be taking along with the triptorelin, Tamoxifen, has the following side effects: the most common, according to Breastcancer.org are menopausal symptoms including hot flashes, vaginal dryness, low libido, mood swings, and nausea.

The other possibility is Aromasin: the most common side effects of aromatase inhibitors are joint stiffness or joint pain.

So the side effects I'm looking at include those of menopause (hot flashes, night sweats, etc.) PLUS mood swings, nausea, low libido, and maybe some joint pain thrown in. Sounds exciting, doesn't it?

Why is the cure worse than the disease? That is my current question.

Friday, March 27, 2009

Google Reader makes it easier

Several of my faithful readers (!) have noted that they don't know when I post a new post to my blog, and it's a pain to have to go to the webpage all the time. So here is a solution.

Use Google Reader.

This is an application that allows you to "subscribe" to blogs you like, and then you can easily see if there are new posts. It's very cool.

Here are instructions to sign up for and use a Google reader account: (if you don’t already have a Google account or a Gmail account, you have to sign up - if you already have a Google account, sign in and go to step 5)
  1. go to Google.com and look for a button that says “create account” or click on this link
  2. just type in your current email address, create a password, and complete the info they ask you for (very minimal)
  3. they send an email to your email account, you click on it, and you are set!
  4. now go back to Google.com and sign in using your email account and password (that you just created)
  5. now click on My Account (upper right hand corner) and then click on Reader
  6. on the top left it says Add A Subscription
  7. click on that, and type in MotherThoughts
  8. when you see my blog listed, click on Subscribe
  9. now you will see MotherThoughts (10) on the left, if you click on it, you will see the first few sentences of my last 10 posts
  10. click on a post, and it will take you to my blog, to that post!
  11. now add some other subscriptions to blogs you like!
  12. now, all you have to do is come back to Google Reader in order to see if there are new posts! Cool, huh?

Thursday, March 26, 2009

Gloria is 75

I couldn't let today go by (well, it was actually yesterday) without noting that it is the 75th birthday of Gloria Steinem. Wow. Wow that she is 75 (how can she be 75?) and wow to all that she has accomplished.

Here is what some others are saying:

http://jwablog.jwa.org/Steinem

http://www.feministing.com/archives/014398.html

http://www.nydailynews.com/lifestyle/2009/03/25/2009-03-25_the_gloria_steinem_factor_on_feminist_ic.html

Tuesday, March 24, 2009

Menopause, here I come!

Thanks to everyone for writing such supportive comments and emails after yesterday's rant. I was truly a mess yesterday. Today, I'm happy to report that things are much better.

We met with the (hated) onc who was very charming (damn her!) and kind and respectful. She went over the results in great detail, and explained why she felt it was important to look at both sets of figures, even though they are quite different and show different things. In the end, she agreed with the assessment of the Oncotype score, which showed that I would receive little benefit from chemo. It all comes down to how you feel: do you want to hit the cancer with all the big guns you have, or do you want a more moderate approach? I fall into the second category, so we are NOT going to go with chemo.

What we are going to go with is not one, but two research studies. The TEXT trial involves ovarian suppression (woo hoo menopause!) and then one of 2 medications, Tamoxifen or an Aromatase Inhibitor, both of which have been shown to reduce recurrence of cancer, so it's a win-win. The second study is of 3 different medications to reduce bone loss, and which have recently also been shown to reduce recurrence of cancer by a third. So both of these studies involve things that will be helpful to prevent recurrence. So I'm very satisfied with my decision.

I still have to go through radiation, which will be in late April and May, and then after that, I'll start the studies. So menopause will have to wait just a bit longer...

Thanks again, everyone, for your support. It makes a world of difference to me.

Monday, March 23, 2009

Losing it

I've actually been pretty good up 'til now. I found out pretty much for sure that I had breast cancer on Jan. 2, and it was confirmed on Jan 9. Since then, I've had 2 surgeries, about a million doctor appointments, I've waited for results (patiently and impatiently), I've felt supported, I've felt alone, I've felt sad, I've felt angry, I've felt nothing. But now....I'm losing it.

I'm crying a lot.

Now I can't talk about it -- the decision whether or not to get chemo -- without crying. I cried at work. I cried on the phone. I cried this morning at home. I'm starting to cry as I write this.

I don't want chemo. That's my line in the sand. I can take everything -- I think -- but I can't take that.

Tomorrow we are going back to the onc (the one I am now furious with) and I'm afraid that I will start crying the minute we start talking. I'm sure I will. But I don't know how to stop myself.

I need to calm down.

Now I'm afraid that I'll dig my heels in and I won't be able to hear what I actually need to hear. I get it that the docs aren't quite comfortable yet with the Oncotype. That they are more used to using the Adjuvant Online data. That they feel more comfortable being conservative, giving patients chemo just for insurance. But I don't want that.

Give me strength. Now I need it.

Sunday, March 22, 2009

Trying to make decisions

I've been mulling and ruminating and thinking and worrying all weekend. I've looked at websites and journal articles and sites that calculate risk and discussion boards. I've looked at everything, tried to weigh the evidence, tried to make a decision. I'm angry at the oncologist for making what seemed initially to be a simple decision, more complicated. I'm angry at her for injecting doubt into the process. I'm angry at myself for being afraid of all the side effects. I'm angry that I have to deal with this at all.

Ugh.

So this is where I am right now: I feel like the evidence points at the fact that stopping the function of the ovaries in a pre-menopausal woman (like me) is helpful in preventing recurrence of breast cancer. It may even be equivalent to chemotherapy in its utility. So my thought is to go into one of the trials that gives you an injection each month, to stop your ovaries from working (and essentially puts you into menopause), and then randomizes you into one of two medications: Tamoxifen or an Aromatase Inhibitor (AI), both of which have also been shown already to reduce recurrence. Even without chemo, I'll have plenty of side effects to contend with: the side effects of early menopause (hot flashes, night sweats, etc. etc.) as well as the side effects of Tamixifen (similar to menopause) or the AI (joint pain).

Sounds lovely, doesn't it?

We meet with the onc on Tuesday, and will try to make sense of all this.

Tuesday, March 17, 2009

Confusion

I promised an update on my visit with the oncologist, so here it is. I was a bit surprised at how uncertain and unclear she was about what was best to do in my situation. I had thought that with the Oncotype score in the "low risk" category, that there would be no question that I didn't need chemo and that I would simply have my radiation, start on Tamoxifen, and go on my merry way.

That was not the case.

Turns out that my Oncotype score is in the low risk category -- it's 15 -- and the cut off for moderate risk is 18. What 15 means, according to the test, is that I have a 10 percent chance of recurrence in 10 years (confidence interval of 7-12%). If you look at it another way, that means I have a 90% chance of NO recurrence, which doesn't sound too bad to me! But somehow, this wasn't satisfactory to her. I'm still not sure why.

If I did have chemo, the benefit in terms of preventing recurrence would be only a percentage point or 2. So that just doesn't seem worth it to me. And that's what I told her.

Interestingly, in the TAILORx study, if "the Recurrence Score is 11 to 25, the risk of recurrence is about 7 percent to 16 percent with hormonal therapy alone. Patients who have a Recurrence Score in this range will be randomly assigned to receive chemotherapy plus hormonal therapy (the standard treatment arm) versus hormonal therapy alone (the experimental treatment arm)." So even in this study, they wouldn't know what to do with me. I would get treatment by random assignment.

Because I am pre-menopausal, there is also the question of stopping the function of my ovaries. Since my tumor was fed by estrogen and progesterone, there might be a benefit to putting me into premature menopause (or temporary menopause) so that there is less circulating hormone. She gave me several study protocols to look at that are experimenting with this idea. You get a shot once a month that stops your ovaries from working, and there are other medications as well. I am considering this, but am still not 100% convinced.

What I really need to ask her is this: I understand that the conditions in my body that caused this tumor are still there, and that if we are to prevent a recurrence, we need to change the conditions. What is the best way to do that?

It's frustrating that sometimes there aren't straightforward answers. I was talking to a friend recently, and she said: If there is no one right way, it means that whatever you choose, will be the right thing. Good point.

Friday, March 13, 2009

May your eyes sparkle

This has been a very strange week.

It started Sunday in the ER, where I learned that the thing that had been bugging me for a week was indeed an abscess that needed to be drained. Yuck. Even after being drained, it continued to be painful (hello, Percocet) for several days, and then I gradually realized that I had to go into the surgeon's office to have it re-packed EVERY day. For quite a while. So the surgeon's assistant and I are becoming very close. And I realized that it's humiliating and humorous at the same time to have to show your ass to a bunch of people you don't even know. And to have them poke around in it. And then to find out that it's not just an abscess but it's caused by the staph infection MRSA, which is hard to get rid of and possibly contagious... and then I'm trying to disinfect the house, and wash the sheets...

But even with all this, by mid-week, the abscess was hurting less, and I stopped taking the Percocet, and I started being able to do a few things. One of which was finishing up the dedication page for J's Tanach. The third graders at Schechter have an event called Kabbalat HaTanach which means "receiving the Tanach" (which is the Jewish Bible, containing the Torah, Prophets, and Writings). The event is important because the kids actually get a Hebrew/English Tanach which they will then use to study for the rest of their school career. The parents have the interesting task of creating some kind of meaningful dedication page. What I ended up with was 3 components: a quote about the Torah that was read at Jordan's baby naming; his name in Hebrew and English from his birth announcement; and a little paragraph, hand written, from us.

Here is the quotation, which I love, from Danny Siegel:
May your eyes sparkle
with the light of Torah
and your ears hear the music
of its words.

Here is J looking at the page I created:


So this morning, in addition to giving the kids the Tanachs, they did a little play about Joseph and his brothers, entirely in Hebrew. Very impressive. J was a character who rode a camel.


It was quite a day. I also met with the oncologist, but that will have to wait for another post.

Thursday, March 12, 2009

Conversation in car with 9-1/2 year old son

Driving home from school yesterday, J had something to tell me:

"Mommy, at school today, Esther* told me that she had a dream about me last night."

"She did? What was her dream about?"

"Well, she dreamed about me and she dreamed that she was kissing me."

(Gulp)

"Wow! How did that make you feel?"

"Embarrassed."

"Well, I can see how you might feel that way."

"Mom, I'm only 9!"

"I know."

"And then Richard* had a dream, and in his dream, he was lying in bed with a pretty girl, and then she went under the covers and...."

"And what?"

"She kissed his penis."

"She kissed his penis?"

"Yup."

"Boy, that is a strange dream."

"People don't really do that, do they?"

"Um......"

* the names have been changed to protect the innocent

Sunday, March 08, 2009

Bad things come in threes?

I'm having a strange year. First, my basal cell carcinoma, which was removed with little fanfare back in September. Second, my breast cancer, which has been well-documented here. And now, for some reason that I cannot understand, I am experiencing the most painful of all: an abscess (in a very embarrassing place).

I tried to do the right thing. I noticed it and went to the doctor. She said to try soaking in hot baths, and it might resolve itself. I did that. It didn't. It got worse. I tried tea tree oil, ground up parsley, baking soda mixed with lemon juice and Vitamin E. Still no luck. So today we went to Needham's finest emergency room -- once again -- and the kind doctor did her thing to the abscess. It hurt some and was overall just plain gross. Now it's draining, and it still kind of hurts, and it hurts to sit, and I'm kind of wondering why all this is happening to me.

I guess it's true: bad things come in threes. So I should be safe from here on in, right?

Friday, March 06, 2009

And now for something completely different...

Why do things like this happen? I was innocently shaving my legs, and then....

Thursday, March 05, 2009

I get to keep my hair!

Heard from the oncologist today, as well (why do they always call on the same day?). I am in the low risk category for recurrence on the Oncotype DX test! That means that I most likely will have hormone-blocking therapy, but will not need chemotherapy. Woo hoo! Time to celebrate!

I get to keep my breasts!

I know, strange title for a post. But I'm strangely happy about it. I never thought I had such a great relationship with my breasts. They are pretty small, never grew as much as I'd hoped. Cleavage is something I've never experienced. And I had all kinds of trouble breastfeeding. But this breast cancer experience made me realize that I like them. And I didn't want to have them taken off.

So today I found out that the surgeon got clear margins, and I won't be needing anymore surgery, lumpectomy, mastectomy, or otherwise. So I get to keep my breasts.

Wednesday, March 04, 2009

Still waiting

and waiting and waiting and waiting for results .... am becoming very grumpy.

Monday, March 02, 2009

Alcohol and breast cancer...again...

Shortly after posting my last post on the link between alcohol and breast cancer, this appeared in my e-mail from the American Institute for Cancer Research:

I want to share some exciting news with you. Cancer prevention has taken a big step forward today. The American Institute for Cancer Research presented the findings of the most comprehensive report on cancer prevention policy ever undertaken at a Congressional briefing on Capitol Hill.

Some amazing numbers are contained in the report:

We can prevent over 45% of colon cancer cases and 38% of breast cancer cases in the U.S. by making changes in our diet, physical activity and weight control.

Think about it: 49,000 fewer cases of colon cancer and 70,000 fewer cases of breast cancer a year.


Sounds too good to be true, doesn't it?

So I looked up this report online, which is enormous, to see what they had to say about diet and breast cancer in particular. This is my take: Nothing new. They basically say that it's good to have late menstruation and early menopause, early childbearing, lots of breastfeeding. Exercise seems to help in reducing breast cancer post-menopause. Being tall increases your chances of breast cancer (as if you could actually change your height?). And yes, they think alcohol is bad. I'm just not that impressed with these findings. Most of them are things we already knew, and that women can't really change. Of course you want to have a healthy diet, and exercise, etc. But will this prevent breast cancer?

The Silent Spring Institute makes a very intelligent case for looking elsewhere for the causes of breast cancer:

Many of the established risk factors for breast cancer—such as earlier menarche, later menopause, childlessness, and delayed childbearing—are ones women cannot change. And established risk factors do not account for all breast cancer cases. We simply do not know as much as we should.

Many people are now looking at our increasingly polluted environment as a possible culprit. Breast cancer incidence in the United States has risen since World War II, when industry began pumping out pesticides, plastics, solvents, and other chemicals, leaving residues in our air, water, and soil. Laboratory studies suggest that many of these chemicals may cause breast tumors, hasten their growth, or leave mammary glands more vulnerable to carcinogens.

The United States saw a decline in breast cancer incidence in 2003 and 2004, a change that has been largely attributed to post-menopausal women discontinuing their hormone replacement therapy after research showed that it can cause breast cancer. This trend actually strengthens the hypothesis that other exogenous hormones and hormone mimics increase the risk of breast cancer.

Despite these gathering clues, though, few studies have investigated the effects of modern chemicals on women’s breast health. If we are to have genuine hope of defeating the breast cancer epidemic, we must find ways to prevent the disease from even developing. And we must view environmental toxins as possible targets for our prevention efforts.

So getting back to the original "amazing news": I just think it's more of the same, and not really so amazing. Sorry.

P.S. What others have to say about this:

a post from another blogger who is also skeptical

National Cancer Institute's opinion

from the Susan Love Research Foundation