Day 1,057: Angelina Jolie and Me

I can't count the number of people who have asked me "what do you think about Angelina Jolie?" Those people are not asking me what I think of her acting skills or her tattoos or her large brood of international children. They are asking me what I think about her discussing her decision to have a double mastectomy because she is BRCA+. My first thought is this: What does that have to do with me? She's BRCA+. I am not. I had breast cancer. She did not. It's strange how people think that if a celebrity deals with something cancer-related, you must just UNDERSTAND each other. On the other hand, moments like these are valuable because they open up a conversation that is much wider than any I or any of the normal run of the mill average Jane cancer survivors could elicit. So here's my two cents on what I think about Angelina Jolie, and then here's my 50 cents about what I think about a lot of other things:

Good for her. Angelina Jolie could be awesome or annoying--I have no idea, and neither do you. But one thing is true: She knows how to use her celebrity to get the word out about things. Her situation is one in which loved ones died from cancer, and she found out she was susceptible as well. She made a decision that she sounds very happy with, and her family is happy with it, and she told people about it in an editorial that is quite well-written. She speaks some useful truths: acknowledging that her risk of breast cancer does not go down to zero due to the procedure, highlighting that only a small fraction of women with breast cancer carry the BRCA mutation, discussing the high cost of genetic testing and giving a shout out to lower-income women who don't have access to it, putting in writing the shocking number of 458,000 people who die from breast cancer each year, saying that most women with BRCA have a 65% chance of developing breast cancer (Jolie has been criticized for saying that she reduced her risk of cancer from 87% to 5%--because 87% is too high a number for BRCA+ women. However, if you actually read the editorial, you will note that she gives the correct percentage for BRCA and then says that her doctors gave the 87% number TO HER SPECIFICALLY). She has been criticized for talking about the minimal scarring, the beautiful results and the quick recovery time. But if she had minimal scarring, beautiful results and a quick recovery time, who are we to judge?

Good for her.

It is not Angelina Jolie's fault that the media, women, breast cancer advocates and everyone else under the sun will use her situation to spread false information about cancer, about breasts, about mastectomies. She told her truth and is using her fame to help other people who might find themselves in her situation. If Angelina Jolie undergoes an ooverectomy and volunteers herself for surgically-induced menopause, and then goes out there talking about how difficult it is to deal with the changes of menopause for young (and all) women, she will reach that Goddess-like state of awesomeness for me. And if she doesn't do the surgery or doesn't talk about it if she does, it is none of my damn business. I am also left to wonder why there were so many articles that asked Lance Armstrong about his testicular cancer, without any of them even mentioning his testicles or lack thereof in the case of the one.

So that's my two cents. Here's my 50 cents.

If you put 1,000 women in a room, 120 of them, give or take, will develop breast cancer in their lifetime. Six of the 120 will be BRCA positive. Those 6 women are important. The discovery of the BRCA mutation is one of the most exciting cancer-fighting developments that exists, because it offers a chance for prevention for some women, but also for this reason: Knowing you are BRCA+ IF YOU HAVE BEEN DIAGNOSED WITH BREAST CANCER ALREADY helps doctors manage your treatment plan. It is also important because it is one small window into the role of genetics and DNA sequencing in cancer. It explains only a tiny fraction of breast cancers, but that is better than nothing.

Many of us have nothing. I am one of the 114. More specifically, I am one of the 18 women in the room with triple negative breast cancer, an elusive and mysterious beast.

We have nothing to go on--we know about a slew of risk factors, many of which didn't present in our lives, many of which do not even apply to our non-estrogen-receptive type of breast cancer. If you are a thin 34-year old non-drinker who exercises like crazy and is busy nursing a baby all day, you don't think you will have breast cancer. And, yet--maybe, you find out that you do.

So, given that she knows that she is speaking about a specific situation that a minority of women might find themselves in, I appreciate Jolie's sentiments for what she does NOT say. She does not say that mastectomy was the right choice or the only one. She says it was the right choice for her. I know other women in the same situation who have made different choices. They were not WRONG.

This relates to one of my personal pet peeves about how we talk about breast cancer. There are so many in our society--including cancer survivors--who talk about certain surgeries or treatment options after a cancer diagnosis as if they are the only right decision. People say things like "I had cancer in one breast but I had a double mastectomy because I'm smart, because I'm educated, because I wanted to do all that I could." The implications there are that those who had single mastectomies or lumpectomies are dumb, uninformed, even lazy. The reality is that breast cancer is complicated. I was told, after a lot of teeth pulling on my part to get the docs to be straight with me, that mastectomy--single or double--would not increase my chance of survival or disease-free life AT ALL. Lumpectomy and radiation would offer the same benefits. I chose to do the latter for a variety of reasons, which I've outlined here before, and I think it is totally reasonable and understandable that other women make other choices. For me, I heard what was under the doctors' admissions of the lack of difference in my chances. My cancer subtype, triple negative, was MUCH more likely to metastasize to a distant area of the body than to recur in the breast. And cancer confined to the breast never killed a single person--not one. If my cancer recurred locally, but didn't spread, I would survive. Mastectomy would not lower the risk of cancer cells that had spread throughout the body. Only chemotherapy could do that, and there was no guarantee that that would work either. In 2010, they offered completely different chemotherapy for TNBC than they do today--but of course, I couldn't know that in 2010.

I have absolutely no idea if I made the "right" decisions, and neither do my doctors, and neither do you. No woman with breast cancer knows that. This disease can rear its ugly head when you least expect it, and that is a truth that millions of us have to live with every day, without knowing if the methods we used worked. We are doing the best we can with the information available to us at the time. As I said to more than one doctor who asked me what I wanted to do, for each one of the literally hundreds of decisions I had to make about my care and treatment plan: "I want to go home."

And that was the one choice that I just didn't have. So let me be the one to say that there is too much emphasis on our POWER over this thing--too much emphasis on what we can control, what is right, what is "heroic."

Let me say this: You are not more heroic or more informed or smarter if you are diagnosed with cancer and get a mastectomy, if you have to do chemotherapy, if you have a positive attitude, if you survive, or anything else. My husband said it this morning: "It's heroic to deal with breast cancer--period." This is not a competition, nor a game.

There are 120 scenarios present in the 120 women who find out they have breast cancer. Some might choose mastectomy in part to avoid radiation or chemo and then find out that they have to do it anyway because cancer has spread to the nodes. Some women undergo every aggressive treatment and surgery under the sun and their cancer metastasizes despite their best efforts. Some women do a lumpectomy and radiation only and live long lives without a recurrence. The problem right now is that we don't know who is who. BRCA provides a glimpse, and that is a great stride that has been made in cancer research. But currently, only 1-2% of breast cancer research dollars go toward understanding metastatic disease--which is the only type of breast cancer that has ever killed anyone. That is shameful.

My personal favorite breast cancer celebrity is Robin Roberts. I admire her not just because she is the first famous person I know of to talk at length about TNBC or because she looks so amazing bald. I admire her for her honesty in talking about the difficult things. She has said things like "There is no remission for my cancer," "I'm not out of the woods," "you have days that are so hard you don't think you can go on," and she has shown, to millions of people, the terrible potential effects of toxic chemotherapy as she fights a potentially fatal blood disease brought on by her treatment for breast cancer. Many women will never go through what she has gone through, but she has given a public face to those who already have.

If I were famous, I would talk about triple negative breast cancer, and the relatively high chance of metastasis. I would talk about being a nursing mother at diagnosis. I would talk about sexuality and menopause and my hatred of pink and of slogans like "groping wives means saving lives" and the seemingly ubiquitous feeling that we are, that I am, just breasts and hair and nothing more. I would talk about what is true for me. I am not famous, but that is what I have been doing in this forum for the last three years. I don't claim to represent anyone else. I have talked about this body, this disease, this experience, this woman.

The thing we should all remember about something like cancer is that behind every positive story of empowerment, behind every happy ending, there is so much suffering, fear and death. It is the least we can do for those who experience that reality. And there are many, many people who understand this--including some who are famous, and some who are not.

The other day at my gym, people were discussing the community walk that raises money for breast cancer treatment at a local hospital. A few women were talking about how big this walk has become--more than 12,000 people participated this year, and it started out as just a handful of women walking down the street. One woman remarked that this was inspiring, and amazing. The other woman, older than the rest of us, with a wizened look on her face that told me she probably knows a lot of things that the rest of us don't know, said this:

"Well there are so many because, Jesus. There are so many."

Day 8

I'm feeling a little bit of blog pressure right now, as people are probably waiting to hear what happened yesterday! I had no energy to write last night. I thought that I would feel much better after yesterday's appointment, but it turns out I was wrong. Not because anything particularly bad happened, but because that feeling of "ok now I've got a plan and let's get moving!" did not hit me. I still feel like a too-young person with a horrible disease just waiting to find out if it's worse than what I know now.

I met first with the intern/resident, whatever they're called, and then the surgeon. She is the head of breast cancer surgery at Northwestern and will be very good but was also fairly businesslike. I wanted her to tell me whether or not to get a lumpectomy or mastectomy, and the bottom line is it's up to me. Ugh. I was informed that due to my age and family history of breast cancer (my grandma) I should get tested for the BRCA gene, and if I'm positive, I will have a double mastectomy. They'll also want to take my ovaries at some point. I really can't wrap my mind around that. How much are you going to take from me here? I guess I should focus on all that I will have left. I have nice legs, right? Sigh. Also, what's up with the fact that one company has a patent on this test and can charge $3800 for it and make you wait two weeks for the result, when Walgreens is coming out with some $20 version this week? This doesn't make a lot of sense to me. Either the test is simple and cheap or it's not--which is it, pharmaceutical community? You should beware lying to women with breast cancer. They might get a little testy.

Other news--I have triple negative breast cancer, a cancer they don't know much about that is not caused by hormones, and therefore I won't be able to take drugs like tamoxifen after my treatments. That also means that I will need chemo, regardless of what type of surgery I do. And I will lose my hair. This is really bothering me--more than I even expected. If anyone knows of a place that will turn my own hair into a wig, I think I will do that--cut it off myself and get a jumpstart on the process.

The triple negative thing seems worrisome since it's a more aggressive type of cancer and some studies say things like "women who are unfortunate enough to have this diagnosis have a worse prognosis." Seriously, who is the asshole who wrote that in a medical journal? On the other hand, chemo is more effective on my cancer than others, and after three years, if I'm cancer free, my prognosis is actually better than other types. But it's been hard to wait a week, much less three friggin YEARS to find things out.

Tomorrow I'll get some blood tests, a chest xray and that gene test, but nothing else. That kind of worries me--no bone scan or CT scan, but I guess they know what they're doing. And if I'm negative on the BRCA, I'll have my lumpectomy on June 4 and probably start chemo in the beginning of July. Once that is over I'll start radiation. So this is going to be a long road, and I'm going to be calling on all of those who have offered help--beware!

I met with the plastic surgeon after the regular surgeon yesterday. Besides having to wait an hour and a half for him, I'm glad I did that. He was a really nice guy and changed my negative opinion of plastic surgeons. He showed me the three kinds of reconstruction they could do if I have to have a double mastectomy. I could do the tummy tuck version, which sounds nice--they take fat from your stomach and make boobs out of it. Who doesn't want a flat stomach and bigger boobs with no exercise required? Well, it turns out that I don't! Man did that look like a nightmare. He told me there are much better candidates than me for that (meaning, people with more fat) and that he wouldn't recommend that for someone with small kids because the recovery is 2-3 months. Um, no thanks. Or, they can take fat and skin from your back. Also not appealing.

He said I'm the perfect candidate for the skin expander and silicone implant surgery because I have smaller breasts that haven't sagged. This was supposed to make me feel better, but it just makes me sad about what I might lose. Anyway, at the time of the mastectomy they put expanders in your chest to create an area to put the implants in. After about a YEAR, you are at the point where you decide whether to put fake nipples on or have tattoos put on. Both Gabe and I think that's unnecessary--they look a little weird and really serve no purpose. I mean, all of these fake boobs look nothing like the real thing. They are there to make you look better in your clothes and to make you feel more normal. Anyone who sees you naked is going to do a little bit of a double take I would think. Good thing I'm married! It just sucks to know that no matter what a good job they do, the reconstructions look kind of alien.

It was hard to see all of that, but it helped me decide to do the lumpectomy. I want to save myself that drama if I can. It does mean that if my cancer comes back on the left side, I will be unable to do the silicone implant later after a mastectomy because of effects of radiation and I would have to either have nothing or one of the tougher surgeries. But I will have to wait more than 2 weeks to know the results of the gene test so I'm still in limbo regardless. In surgery, they will also do a sentinel lymph node biopsy to see if cancer has spread to the nodes. So I have to wait until then to get staged. I want to know NOW. I was told it's possible I could be stage one if the tumors are really close together and there's no spreading, but it's probably stage 2 at least. I just can't imagine waking up from this surgery to find that out. That process is terrifying to me. The surgery itself? Whatever--I've had surgery before, it's just pain. I can deal with pain. Bad news and long-term illness is a tougher thing.

I did make one other big decision yesterday. I decided against any fertility treatment. They could freeze my eggs, but that is a dramatic process too, so in the course of a week we've decided to cap our family. One of the hardest things for me is to think about chemo giving me menopause. It is often temporary but can be permanent. And with it goes the usual stuff besides not having your period-- weight gain, hot flashes, changes in sexual function, etc. Of course, some people have none of those side effects with natural menopause or chemo-induced menopause, but how old am I supposed to feel here? I'm not even 35. I can't have more kids, I'm going to be bald, I'm going to go through body changes that aren't supposed to happen for decades.

I know I'm supposed to be positive right now, but that's depressing to me. It was really hard being in the treatment area of the breast cancer center yesterday. I was the youngest person there by 20 years, and everyone--the other bald patients included--looked at me with such sympathy and pity. It was awful. Like, oh honey, you're so young, I'm so sorry. Yeah, well me too. It reminds me of how people looked at me when I was in a wheelchair as a kid. As in "You look normal--what's that about?" My mom says I used to get those looks as a little kid getting blood work for epilepsy too. Yesterday, even the intern guy seemed very upset the one time I started to cry. Gabe decided that was because I'm the youngest most attractive person he's seen there. Now, he's biased, and I'm not saying I agree with that at all, but there is this sense of it being depressing even for the doctors to treat a 34 year old with little kids. It's just not supposed to happen.

But it does happen, and apparently I've had cancer for a long time. They told me that anyone with a 1 cm. tumor (apparently I have 2 of them, not three--one is just a cyst) has had cancer for 3-5 years. And that's with the fast-moving kind like mine. For many people by the time it's palpable it's been there 8-10 years. Part of me thinks well damnit I wish I'd found this years ago! I have breast exams at the doctor's office all the time--I just had one in February or March. How is it all of a sudden obvious? Because I've lost weight so it's easier to find? Or did it mushroom out of nowhere? But then I tell myself that if I had found this earlier, I wouldn't have had my kids, so I guess it was worth it not to find it until now. I have had two pregnancies, delivered healthy babies, pumped milk or nursed both of them--probably all while having cancer. At least they haven't been any the worse for it.

But I'm kind of the worse for it--especially in my mind this last week. Last night I finally came out of the woodwork a bit. I went for a drink with a few friends from the neighborhood while waiting for Lenny to do her dress rehearsal for her dance recital this weekend (note the picture). Want to know about irony? The special was a "ta ta tini"-- a martini to support breast cancer programs at Little Company of Mary Hospital. Needless to say that's what we ordered. I drank about a quarter of mine, and spent the whole time talking about cancer. But no one cried, including me, and it was good to not feel like a total recluse. After I took Lenny home I went out for dinner with an old friend. She got a little teary once but everyone has kept it together for me, which I appreciate. Maybe a day will come when I can talk small talk again. Aren't I that weird girl who likes to talk about sports and old shows on channel 66 like Specterman? Don't I like to talk about nerdy financial subjects? Um, I don't know--maybe I will be that person again in a little while. But not this week.

This blog is more of an update than the emotional ones from last week, and re-reading it, it seems much more boring to me--like a typical blog about something going on in someone's life that is kind of self-important. I'm feeling a little numb now--I woke up last night at 3 AM crying and I think some of the deep-ness came out then and I don't have energy for it today. I'm not apologizing, but I'm hoping that I can tap into some of my other reserves--writing, creativity, humor--once I get past some of this clinical bullshit, you know?

In the meantime, I'll just look at the face of this little dancing girl, and at my son who is finally pulling up and wrecking havoc all over the house, and tell myself that I'll be around to see what kind of people they turn out to be.