Thursday, February 26, 2009

Are we responsible?

A new study has hit the press about the link between breast cancer and alcohol. This one found a small but significant increase in breast cancer (and other cancers) among women who drank alcohol, even moderately.

I've been following this line of research for a while now. I am a moderate drinker -- I love my glass of Chardonnay at night! -- and I don't really want to give it up. Do I really think drinking a glass of wine a day will increase my risk of breast cancer? No. Do I think that wine might raise estrogen levels in women? Possibly. But I am much more certain that estrogen-mimicking chemicals in the environment are more likely the cause of the increase in breast cancer over the past 30 years. And no one is talking about that.

It's much easier to tell women to stop drinking, and to make them feel that it's their fault that they are getting breast cancer. Personal responsibility, right? Even if that is not the whole truth, not by a longshot.

Images from outpatient surgery at BIDMC

When we arrived at Reception, they gave me a round beeper/buzzer thingy, the kind of thing you get at a restaurant when you are waiting for your table. Then we sat and waited for a while in a very nice and comfortable waiting area. They even have tables (kind of like study carrels) so A could plug in his laptop and surf the web (or do work, I'm not sure which) while we waited.

When it's time for surgery, the buzzer buzzes. I'm always tempted to say: "our table is ready!" to the nurse.

# # # # #

Once inside the doors of Outpatient Surgery, we were ushered into a little private space, I guess kind of a cubicle, with a bed, some monitors, chairs, etc. There is a nurse there whose job it is to get you ready. She types all your info into a laptop. You change into a gown, put little non-skid socks on your feet, and get into bed. They give you a warmed blanket (so nice!) and ask you a ton of questions, take your temperature, blood pressure, pulse. Then different people come by: the surgeon and the surgical resident; the anesthesiologist and the anesthesia resident; the OR nurse. Everyone introduces themselves and is very friendly, competent, and confident. Everyone asks you the same questions over and over again: your name, your birthdate, what you are having done, when did you last eat, are you allergic to anything, etc. etc. Finally, the anesthesiologist puts a line into your arm (I have good veins, so this typically is not a problem), and pretty soon, everyone's ready to go. This time, I was awake when they wheeled me into the OR, and I got to see the strange OR lights. Then...I was out.

# # # # #

Once again, I awoke, felt fine, no nausea. After a few minutes, the nurse helped me into a lounge-type chair and rolled me into a different area. Then she gave me ginger ale and graham crackers (I was starving!). I felt lightheaded but really okay. A came in, and we sat for a while. After about 20 minutes, I got dressed, used the bathroom, and we actually walked out of the unit this time (last time, I had a wheelchair). And that was it!

# # # # #

The worst thing this time around was that I was starving. Surgery was scheduled for 2:15 pm and I couldn't eat or drink anything all morning. By the time I got into the Outpatient Surgery bed, I was starving and had a wicked lack-of-caffeine headache. And my sinuses were killing me. And I was very nervous. All those symptoms were gone, though, once I was done with surgery.

# # # # #

I have had 3 surgeries this year (the basal cell carcinoma removed from my shoulder this fall, and the 2 breast surgeries this month) and I hope that I am done. No more surgeries for a while, please.

Monday, February 23, 2009

Sarah Haskins: Science and skin care

And now for a little humor...



If you don't see anything, click on this link instead.

More surgery

Back to surgery this week. My surgeon is going to "re-excise" me, which for some reason, sounds really gross. She wants to get "clean margins" around the tumor. So that's the first question. Can she get clean margins?

The next question is the Oncotype DX results. Will it predict that I have a high, low, or intermediate (and indeterminate) risk of recurrence?

This is what an article on breastcancer.org has to say:
After lumpectomy alone with clear margins, chances are that you are cancer-free. But your doctor will talk to you about treatment you can have just in case some cancer cells were left behind.

In this situation, getting the best breast cancer treatment can feel like a balancing act: You want to do as much as you can to get the cancer out and lower the risk of it coming back. But you'd like to avoid uncomfortable side effects that might lower your quality of life.
That just about sums it up.


Saturday, February 21, 2009

Angry

Okay, now I'm starting to feel angry. About cancer. In case you were wondering.

First, it was the $3800 test. How is it that a company can profit on thousands of women who have breast cancer? And insurance companies don't necessarily pay for this test. They might, but they might not. So even though it's in the national clinical guidelines that you get this test to make sure you are getting appropriate care, you may have to pay for the test yourself. So the company profits. It just doesn't seem right.

Today, there was an article in the Globe about iron workers at the Dana Farber Cancer Center spray painting the names of kids who are patients on the crossbeams of a new building. Adorable, huh? No, it sucks. Why are all these kids getting cancer?

All these woman and children shouldn't be getting cancer in the first place. Treatments are fine, but we need to prevent it from ever happening, get it?

Friday, February 20, 2009

Funny Names

I thought this was hysterical. And he's right about their names.

Wednesday, February 18, 2009

Blah

It's been only 2 weeks since my lumpectomy, and while my body feels pretty good, I'm feeling kind of dejected inside. I don't know what to feel. I have breast cancer. It's early. It hasn't spread. But I'm still having 2 surgeries, which is twice as many as I've had in my whole life. And I don't know what hellish treatments might come after that. I keep reading about the different options (hormones, radiation, chemotherapy) and all the possible side effects and it's making me crazy. I know about the side effects of radiation and chemo, but I haven't really thought much (until now) about the hormonal treatments. Some of the side effects of these treatments are like menopause. Some of the side effects put you into menopause. Well, I was going to have to go through that anyway, right? So now it will just happen sooner. But I don't really want to go through that.

Then I read about all these brave women who put up with all these incredibly awful side effects, and think: why am I such a wimp?

I hate this. Blah.

Tuesday, February 17, 2009

The $3800 Test

So the next step in my "journey" is a test called an Oncotype DX. It's an amazing test that actually looks at your genes to determine whether you are likely (or not) to have a recurrence of breast cancer. You end up with a score between 0 and 100. If you have a low score, between 0 and 18, you are at low risk for recurrence and won't really benefit from chemo. If you have a high score, over 31, you are at higher risk for recurrence and would benefit from chemo. And, of course, if you are in the middle, with a score of 18-31, you are in the gray area. You might benefit, and you might not. Here is a huge amount of information on this test. It sounds amazing, doesn't it?

My oncologist ordered the test, and I got a call from Genomic Health, the company (the only company) that does this test. Can you say "monopoly, " kids? The nice woman on the phone told me she wasn't trying to confuse or scare me, but that the test costs $3800 and that insurance companies don't necessarily pay for it. But she assured me that they probably would pay, and if they refuse, the company would challenge their refusal.

She also told me that they have a program to reduce or eliminate the fee, if you do have to pay. This made me feel pretty strange, since we could pay if we needed to. But I'm sure there are many people out there who couldn't. What's ironic about the situation is that insurance companies would save a bundle if people didn't get unnecessary chemo, so they should be happy about the test. They should be running to pay for this test. But apparently that isn't the case.

After hanging up the phone, my first thought was to buy stock in Genomic Health. Maybe we can benefit financially from this ridiculous situation.

Monday, February 16, 2009

Juno

I've been catching up on some movies lately, thanks to Netflix, and I must say, I haven't found them to be all that wonderful. Maybe I'm just cranky, or maybe they aren't all that good?

I watched Juno last night, which everyone was talking about for a while. Overall, I thought the movie was just okay. Ellen Page (Juno) was wonderful, but not entirely believable as a 16-year-old who finds herself pregnant. Her lines seem just a bit too pat for someone in such an emotional situation.

My biggest problem with the film is that I thought the relationship between Juno and the prospective dad (Justin Bateman) was creepy. They seemed to be connecting on a very adult and almost flirtatious level, especially the scene where he demonstrates to her how he used to dance with his prom date in the '80s. I almost expected him to kiss her. Yuck. (Uh, oh, I just read a review that said he DID hit on her. Did I miss that? Okay, I found another review that said it was left ambiguous. Phew.)

Oddly, the Bateman character seemed more 3-dimensional than the wife character Vanessa (played by Jennifer Garner). I really didn't get a feel for her at all, except that she was very straight-laced, and also really really wanted a baby. I didn't feel like Juno really connected with her at all, and therefore it didn't make sense to me that she decided to have Vanessa adopt the baby anyway, even as a single mom.

I definitely did not see the break up (between the adoptive couple) coming, so I guess that is a plus. And the soundtrack is very interesting.

I liked the fact that Juno and Bleeker, the father of the baby, actually became closer as the movie progressed, and that Juno decides that she loves him around the time that she is ready to give birth. I also loved the small details, like the Hebrew alpha-bet poster on the back of Bleeker's door in his bedroom and his race-car bed. And the fact that he loves orange Tic Tacs.

I think I'd give it a B. If anyone's interested.

Friday, February 13, 2009

Putting my money where my mouth is

I do research. I believe in research. Well-done, science-based research. In order to have research results, people need to take part in studies. I spend a lot of my work time cajoling encouraging people to take part in research studies.

Now there is a study that I could take part in. Should I? If I do, there is a chance I might have to have chemo that I otherwise wouldn't.

Should I put my money where my mouth is? Or just shut up?

Thursday, February 12, 2009

Prevention is the cure

I've been thinking about the Breast Cancer 3-Day and other walks and fundraisers for breast cancer. You have to be careful where you give your money. Not all causes are the same.

Right now, there are two things I am interested in:
  • how to prevent breast cancer by finding the cause
  • how to cure breast cancer by refining treatment so women get enough and not too much (I'm not happy with all these prophylactic double mastectomies that I'm reading about!)
If you really want to make a difference, donate to one of these organizations:

The Massachusetts Breast Cancer Coalition has a really wonderful description of its work.
...we define breast cancer as a political issue, and challenge all obstacles to the eradication of this disease. To eradicate breast cancer we must prevent it. This does not refer to early detection in the form of self breast exams and mammography. We are trying to find the causes of breast cancer, so that we can prevent every woman and every man from ever getting breast cancer in the first place.

While screening and treatment are critically important, many good organizations and federal programs are offered to assist in the screening, diagnosis and treatment of breast cancer. What is far too under-funded and under-recognized is the need to research what is causing this disease. Although there are some important steps that we each can take in our own homes to eat well, exercise, avoid cigarettes, etc., we know that even the healthiest among us still has a 1 in 7 chance* of getting diagnosed. For this reason, the MBCC advocates for increased resources to investigate environmental links to breast cancer in the form of toxins that can be found in our air, water, soil, food, homes, cleaning supplies and other consumer products that we use every day. Furthermore, we challenge companies who have co-opted the pink ribbon to sell their products, while giving little to none of their profits to prevent breast cancer and even worse, may have chemicals in their products that are adding to the epidemic.

A similar organization is The Breast Cancer Fund in San Francisco.

Another wonderful organization is the Dr. Susan Love Research Foundation. You can either donate to the foundation, whose goal is to end breast cancer by doing research on ducts of the breast (which is where most breast cancers begin), or you can join the Army of Women, which is trying to recruit 1 million women who may take part in research studies about various aspects of breast cancer or breast health. Here is what the stated goal of the Foundation is:
More than $4 billion dollars has been spent on breast cancer research in the United States. Yet we still do not know what causes breast cancer or how to prevent it. At the Dr. Susan Love Research Foundation, we believe that to eradicate breast cancer we need to begin where breast cancer begins—in the breast ducts. The Foundation is engaging in an extraordinary opportunity to focus research on the breast ducts and understand how the breast works. With your support, we will determine how to prevent and eradicate breast cancer once and for all.
Another agency I like is Breast Cancer Action, which also sponsors Think Before You Pink. Breast Cancer Action advocates for policy changes in three priority areas:

- Treatment by shifting the balance of power at the FDA away from the pharmaceutical industry and towards the public interest while advocating for more effective and less toxic treatments.
- Environment by decreasing involuntary environmental exposures that put people at risk for breast cancer.
- Inequities by creating awareness that it is not just genes, but social injustices - political, economic, and racial inequities - that lead to disparities in breast cancer outcomes.

Think Before You Pink urges people to avoid reflexively giving to any organization that claims to be supporting breast cancer without finding out where the money is actually going. Here is a list of their critical questions to ask.

I also like the Silent Spring Institute which is doing important hands-on scientific research on environmental links to breast cancer right here in Massachusetts.

I would encourage anyone who wants to give, to look at one of these important organizations first. Thank you.

Wednesday, February 11, 2009

Good news!

The phone was ringing as J and I walked in the door this afternoon. It was my surgeon with the pathology results. Shortly after, the genetic counselor called. Feast or famine!

Here's the deal:

1- the cancer has not spread into the lymph nodes (which means I have a good chance of only needing radiation, not chemo)

2- I do not have the genetic mutation for breast cancer (which means I don't have to worry about having my ovaries removed, or a prophylactic double mastectomy, or scaring my family about their own risks of future cancers)

I will have to have a bit more surgery. My surgeon said what she removed was too "close to the margins," and she will have to remove a bit more breast tissue to get "clean margins," but that will be an easier procedure, and she will go through the incision she already made. That will happen in early March.

All in all, things are looking up!

Back to prayer

If enough people knock on the door to heaven, will it open?

If enough people send their prayers out into the universe, will they be answered?

People keep telling me that they are praying for me. That I'm "in their prayers." That they went to church, went to synagogue, went where-ever they go, and prayed for me. Is it just a saying, or do people really sit down (kneel?) and pray for those who are sick? Someone I know recently told me that her young daughter prays every night for people they know who are sick, and that I'm on her list. Amazing.

So my question remains: if enough people pray for me, will it help? Will it improve the pathology results I'm waiting for? Will it improve my prognosis?

We'll see.

Real Simple is too simple

I have tried to love Real Simple Magazine, really I have. I've really, really tried. I subscribed once, canceled and then re-subscribed. I am genuinely happy to receive it's hefty bulk each month in my mailbox. I bring it upstairs, climb into bed, and start to read. I find an article that interests me, and then... I am disappointed. It stops short of the depth that I was looking for. I try another article...and am disappointed.

I'm sorry. Real Simple is too simple for me. There: I've said it. I need a magazine with more substance. Real Complicated, perhaps?

Sunday, February 08, 2009

Update

I'm feeling much better. My surgeon told me to rest, and I've rested. My right side is still sore where the incisions are, but really not terribly sore. I'm probably going to head into work tomorrow. I'm feeling pretty normal.

On the other hand (there's always another hand - sometimes more than one) I'm worried about the results that I have yet to receive. Here's what I'm worried about:

1. clean margins - did the surgeon manage to get a 2 millimeter margin around the tumor that she removed? if she didn't, will I have to have more surgery?

2. lymph nodes - did pathology find cancer in the lymph nodes (or node - I think it was only 1) that were/was removed? if there is no cancer, I may be able to avoid chemo and just have radiation. if there is cancer, they may need to take out more lymph nodes, and I'll probably need chemo.

3. genetic testing - I haven't been thinking a lot about the genetic test that is being evaluated...but the 3 week point is coming up. Although the chance is low, it is a possibility. If I come up positive for the genetic mutation, that will mean that they'll want to take out my ovaries, that I'll have to decide about a prophylactic double mastectomy (which I think I'm leaning against) and may impact other members of my family. Yuck.

So there you have it, in black and white. My body is healing from the surgery, but I still have some potentially difficult news to receive. Or the news could be great. Or some great, some bad. There's always that third hand....

Saturday, February 07, 2009

Friday, February 06, 2009

Values and parenthood

Amy at MojoMom posted a piece today about the mother of the octuplets that got me thinking. Amy quipped that the mother was "a one woman Mommy-War": so clever. How true! She is really bringing out the worst in people's reactions to her 6 previous kids and now 8 new babies (all without the benefit of marriage, partner, employment, etc.).

Amy's piece got me thinking about the issue of values. Part of the problem with the conversation in the U.S. about childbearing and contraception and abortion is that there are plenty of rights, but no values. If you want to have a child: you can. If you want to terminate a pregnancy: you can. If you want to have lots of children (even if you cannot support them): you can. There is no law stopping you. If you want to have lots of abortions: you can. There is no law stopping you.

Oddly, the only time parenthood is ever evaluated or questioned is in the case of adoption. Then, you actually have to go through a review process to see if you are fit to become a parent. But if you are doing it the "natural" way, you can just go for it. No rules apply. Strange, isn't it, when you look at it that way?

So back to values. The problem with a pluralistic society like ours is that there is no one right way of thinking. Some in our country think it's great to have large families. Others think smaller is better. Some in our country think there's nothing wrong with teens having babies, married or unmarried, and others think otherwise. Some believe in contraception; others are against it. Some believe in abortion; others believe in abortion in certain situations only; others are against it. The problem is, you cannot legislate these sorts of things. There are cultural norms, religious norms, social norms that inform people's decisions about sex and childbearing. There are public health programs that try to encourage people to behave in healthier ways. But there aren't rules per se. In China, there are rules, and look what happened with that.

So we don't want rules. But maybe we want to have a conversation that goes something like this: there is a value to having children that a family (whatever the composition of the family might be) can provide for. There is a value to waiting until a person is ready (whatever that means) to be a parent. Sometimes there is a value to waiting to have a child by using contraception or abortion. And sometimes there is a value to NOT having a child. Laws can only go so far. You cannot legislate reasonable behavior. That takes something else. What the something else is: we still have to figure out.

Monday, February 02, 2009

High school redux

Junior high and high school for me took place from 1973-1979, so over 30 (!) years ago, but sadly and incredibly, it seems like yesterday. Those years were so intense... so miserable...so fraught with yuck... that they still appear in my dreams even today.

Do you remember the mean girls? I wonder if every school had them. In both junior high and high school, there was a group of girls who weren't exactly bullies by today's standards, but they were mean. They would say mean things, laugh at you, intimidate you. I remember going to great lengths to avoid them. This sometimes meant avoiding the girls' bathroom altogether. Which was difficult.

Recently, one of these mean girls "friended" me on Facebook. Apparently, she doesn't remember how she behaved in junior high/high school, or if she does remember, she doesn't care. I guess she feels that time has healed whatever bad things took place between us. Or most likely, she doesn't even remember or realize what she did.

So what is she like today? It's a bit hard to tell exactly from her Facebook profile. Oddly, someone else I know (from a completely different part of my life) knows her today, and commented to me that she probably isn't the kind of person that I would befriend, but she has probably mellowed out somewhat since high school.

Interesting. And strange. Part of me still wants to be mean to her, after 30 years, and pay her back. Isn't that weird?