Pinktober Guest Post: Feisty Blue Gecko

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Today’s post is exceptional in a couple of ways. First of all, it’s just exceptional. It is a superb response to my candidate for this year’s Biggest Idiocy in Pink award. It is exceptional in the strict sense because Feisty Blue Gecko does not, thank God, have metastatic breast cancer. However, I am including it in this series as an exception because of the first reason. I’m sorry if I just made you dizzy. Please don’t forget to check out Feisty Blue Gecko’s blog, and let’s give her some comment love here. Now, over to FBG:

. . .

It takes quite a lot to rev my temper engine, but this is beyond my comprehension. Offensive, insensitive to the extreme and in my view, utterly useless.

Unbelievable

These are just a few reasons that this has incensed me:

  • October 13th is the sole day dedicated to Metastatic Breast Cancer, in itself woefully inadequate.
  • Many women have had surgery which means that not wearing a bra is in the least extremely uncomfortable.
  • Many of us are trying to hide the fact that our surgery brings significant asymmetry – not wearing a bra would be excruciatingly embarrassing.
  • Most surgery for breast cancer brings at best pain and at worst restriction in range of movement.  Waving your arms in the air (as in the image above) is another indication of how far removed this is from reality.
  • What about men?????

So, what on earth could not wearing a bra for a day possibly achieve? 

Not awareness. Not respect. Not much needed research. Not action.

And certainly not a cure.

Flight of the Tatas: Summary and Analysis

Whew! That was a Telling Knots first! I’d like to put things into perspective now with a summary and my analysis of the issues.

On the blog

I first became aware of the Flight of the Tatas event when fellow-blogger Scorchy Barrington posted a link to this article about it in the  Wall Street Journal online European edition. This was on Wednesday, July 3rd. I published a post about the event and my first thoughts on it on Thursday, July 4th.  Beginning on Friday, July 5th and continuing today, July 6th some people who had never commented on the blog before and who appeared to be unaware of my orientation in writing it began to write comments that I and many of my friends found offensive. Some of my friends and I began to respond in kind. Things went down from there. Today I cleaned up the ad hominem attacks and the strongest language. Comments are still open, but if the level of discourse degrades, I’ll shut it down.

Behind the scenes

I spent some time on July 3rd and 4th looking for any evidence that Living Beyond Breast Cancer (LBBC) was aware of this purported fundraiser. All I found was their logo among the sponsors on the Flight of the Tatas home page. Nothing else. I decided to contact them. Things were further complicated by some technical issues on the LBBC site that resulted in my first two emails (to LBBC development and communications addresses) being returned as undeliverable. I sent my third to the “mail” email address on July 4th and it did not come back.

On Friday, July 5th, Jean Sachs, the CEO of LBBC replied to my email. I published her message in my blog that day. I found her response completely reassuring.

Analysis: What’s the problem with Flight of the Tatas

Because at least a couple of the comments seemed to me to be genuinely puzzled about why this event offended me and so many others, I decided to spell it out more carefully. There are two issues specific to the July 4th Flight of the Tatas event, and there are some more general issues.

Specific Issues

According to the message from Jean Sachs, the event used the Living Beyond Breast Cancer name and logo without permission. I am no lawyer, but I wouldn’t be surprised if this were a copyright infraction or something of the sort. That’s one issue.

Another specific issue is that LBBC were not consulted, were not asked if they wanted to be a part of this event. It is as though the event organizers just put down the first breast cancer organization they came across or perhaps knew from personal contact. This is bad corporate manners, bad event organizing and very arrogant.

It must also be said that many people in the not-for-profit economy do not believe that all money is the same, do not believe that it doesn’t matter where donations come from. Some people and some non-profits feel that it is wrong to take donations of money that was gained through exploitation. I have personal experience with two very different organizations that have turned down sizable donations because they did not want to give the donors the legitimacy that accepting would have conferred.

General Issues

Why is an event featuring “a bevy of topless skydivers” offensive to so many people who have breast cancer and/or who are active in breast cancer awareness?

Sexualization of breast cancer in fundraising and awareness campaigns is a very sensitive issue. This can be seen, not only in the event we’re talking about now, but even in more mainstream campaigns. There are many reasons to object to it:

* It tends to portray breast cancer as a condition that damages our identity as women, rather than as a disease that kills almost one-third of the people affected by it.

* Breast cancer does not strike only at women. Men get breast cancer and men die of breast cancer.

* Slogans like “save the tatas” (which was not invented by the organizers of this event) tend to present women as sexual objects and give the impression that the worst thing that happens to someone who has breast cancer is that they may lose their breasts, and that this loss is catastrophic.

* Slogans like “save the tatas” are semantically similar to slogans like “save the whales”, further tending to make women “other than”, to ignore their full human existence.

Breast cancer is not cute. Breast cancer kills people. In all likelihood it will kill me and at least two of the commenters (that I know of) in the July 4th thread. This is a life-threatening illness. Those of us who object to this trivialization and sexualization tend also to object to these slogans and the various pink campaigns wherever they appear.

These are wonderful topics for further conversation, but let’s all remember that we can disagree with respect. Ready, set, go!

Flight of the Tatas: LBBC Responds

Yesterday I posted the text of my email to Living Beyond Breast Cancer about their supposed association with a topless skydiving event in Las Vegas that claimed to be raising money for LBBC.

It is with great pleasure that I can confirm that Living Beyond Breast Cancer (LBBC) had absolutely nothing to do with Larry Flynt’s Flight of the Tatas event on July 4, 2013. I just received the following email from Jean Sachs, CEO:

Thanks for your email regarding the Flight of the Tatas event.  I apologize for not responding sooner but LBBC was closed yesterday and most of my staff are out today as well.
 
I can tell you that LBBC was not a sponsor of this event.  We never gave the organizers permission to use the LBBC logo, never agreed to be the beneficiary and, in fact, only learned of the event on Wednesday, July 3rd.
 
LBBC’s marketing staff member Kevin, copied on this email, will be reaching out the organizers of this event on Monday.
 
I will be on vacation next week but if you would like to speak with me directly please give me your number and I will call you.
 
Best,
 
Jean
Thank you, Jean Sachs and LBBC, for responding so rapidly and for assuring us of the integrity of the organization. You’ve made many people feel much better.

Flight of the Tatas? Really?

Breast cancer cell

Breast cancer cell. Not what Larry Flynt has in mind, I’d wager.

I was already simmering with anger about the trivialization and sexualization of breast cancer when I wrote yesterday’s post about men with breast cancer. My rage boiled over when I saw that a fellow rabble-rouser living with breast cancer, my friend Scorchy Barrington, had posted a link on Facebook about the single most tasteless breast cancer fundraiser I have ever heard about: “Flight of the Tatas”. (Sorry, I refuse to link to their site.)

Here is the first paragraph of the press release that was published in the Wall Street Journal online European edition under the disclaimer “The Wall Street Journal was not involved in the creation of this content”:

LAS VEGAS, July 3, 2013 /PRNewswire/ — Larry Flynt‘s Hustler Club, the most audacious gentlemen’s club in Las Vegas, will host “Flight of the Tatas,” a topless charity skydive beginning at 7 AM on Thursday, July 4, 2013 in Las Vegas, Nevada. Benefiting the Living Beyond Breast Cancer Foundation, a nationwide non-profit organization dedicated to supporting women affected by breast cancer, the unique event will attempt to break the Guinness World Record for the most topless skydivers. LBBC empowers all women affected by breast cancer to live as long as possible with the best quality of life.

Participating in this display will be an “adult entertainment legend”, an “adult film superstar”, and a celebrity magician, “along with a bevy of brave and daring topless jumpers”.

The fundraiser is being sponsored by Larry Flynt’s Hustler Club & Casino and Hustler Hollywood, among others. It is taking place today, July fourth. This is supposedly a benefit to help Living Beyond Breast Cancer (LBBC), but I could find nothing in the press release or the dedicated web site that indicated how much of the money raised would go to LBBC. In fact, LBBC is listed as a sponsor along with “Little Pussie Big Cock” and various of Larry Flynt’s Hustler enterprises (and others).

There is a “Donate for Breast Cancer Research” button on the home page. That’s all I found. I am writing to LBBC to try to get more information, but the event is today. I’ll post whatever I hear from them. I have rarely wanted more sincerely to be shown to be wrong in my assumptions. (The text of my email to LBBC’s development people is added at the end of this post.)

Now, I am not a “citizen journalist”. I am a woman who has metastatic breast cancer and a blog, a feminist with left-leaning social and political ideas. I have been known to displace my fear and anger about the cancer that is trying to kill me onto other targets. But even if that is what I’m doing now – so what? This strikes me as a very deserving target, indeed.

A more blatant example of trivialization and sexualization of breast cancer can hardly be imagined than a “Flight of the Tatas” in which “a bevy of topless skydivers” will attempt to beat the Guinness world record for jumping out of airplanes half naked and then land at a “gentlemen’s club” owned by that monument to taste and respect for women, Larry Flynt.

The event is today. By the time you read this, it will be over, most likely. Nevertheless, I’d like to hear your thoughts on it. Am I just an old school feminist? Is this as disgusting to you as it is to me?

Addendum: Text of my e-mail to LBBC’s development staff

I was extremely surprised to find out that LBBC is listed as both the beneficiary and a sponsor of Larry Flynt’s “Flight of the Tatas” event taking place today in Las Vegas. Can you tell me, please, what percentage of funds raised by the event was promised to LBBC and if this is a percentage of the net or gross intake from the event?

It seems an odd sort of event for a breast cancer organization to be associated with.
Please feel free to comment on the blog or to contact me directly. I am very interested in knowing how LBBC’s involvement with Larry Flynt’s Flight of the Tatas event came about.
Thank you very much.

Cancer is Not Pink: Men with Breast Cancer

This is not a picture of breast cancer.

This is not breast cancer.

I am a wimp.

It is so easy for me to sit here and expound: “I am so marginalized! The breast cancer awareness community doesn’t talk about people with mets. We scare them. That 30% figure just doesn’t bear thinking about. That’s why they marginalize us.”

And we are marginalized. That is a true statement. But so are women with mental health issues who have breast cancer. And migrant women. And refugee women. And women in war zones. And homeless women. That is all true.

But you know who is really marginalized? Men with breast cancer. How often are they even mentioned? How often do you (do I?) think of men when thinking of people with breast cancer? Pretty close to never, I’m betting.

Yesterday I encountered Breast Cancer Brothers, a Facebook community page not unlike Telling Knots, the 30%, and I had the opportunity  to exchange a few words with a man who, like me, has metastatic breast cancer. I received a nice comment from his wife, thanking me for sharing their family photo on the 30% page.

My world was jolted.

I admit that it is not very often that I look at my situation and think how much easier it is for me than for someone else. Yes, people have said really stupid things to me about breast cancer, but can you imagine what the men have to go through? I cannot, not really.

I put out a request on Breast Cancer Brothers inviting any man with breast cancer at any stage to write a guest post for this blog. One man has accepted the invitation, which makes me very happy. Maybe more men will agree, too. I’d love that.

Cancer—breast cancer—is no respecter of persons. Cancer does not care if we are rich or poor, married or single, gay or straight, independent professionals or temp workers in a warehouse or street dwellers. Cancer does not care if we are male or female. Cancer is not pink.

I’d like to make a request of everyone who is reading this post: please go over to Breast Cancer Brothers and show them some support. Like the page, leave a comment. Show them that while some of us may feel marginalized, while some us truly are marginalized, we will not marginalize each other.

My oncologist and I

choosedocEarly in July I have an appointment with my oncologist. She is younger than I, but more and more people are these days. Her father is an extremely well-respected doctor in his field, a longtime member of the Israeli medical elite. I don’t think she rode on his coattails throughout her training, but there is something of the aura of the elite that hovers around her. She and I do not have a natural affinity, but we have mutual respect.

I had no idea of how to choose an oncologist. The way it worked was this: After the biopsy confirmed the diagnosis my family doctor referred me to a surgeon. I didn’t really care who the surgeon would be because I knew what procedure I would have, and it was a pretty standard one. A day after my mastectomy, the hospital’s breast cancer nurse came to talk to me about, among many other things, choosing an oncologist.

By the way, a word about breast cancer nurses. I’ve come in contact with two, at two different hospitals, and could not be more impressed. Both had advanced nursing degrees, as well as a doctorate. Both were knowledgeable, caring, funny, supportive, respectful of my level of knowledge, and empowering. They gave me all the time I wanted, provided multiple ways of getting in touch with them, and “followed” me as long as I needed. I am confident that even today, years after my last contact with either of them, I could call either one and get whatever I need. Breast cancer nurses rock, if these two are anything to go by!

So the BCA nurse came to my room on the post-operative unit. When she arrived, a couple of friends were at my bedside, both of them nurses at the same hospital. She stayed and exchanged pleasantries with them for a few minutes, and they left to go to work. Then she told me her story.

This particular BCA nurse had had breast cancer herself and at that time was NED (no evidence of disease). She told me the story of how she had felt and reacted, not too much detail, but enough to help me feel more comfortable. We had a good connection. She gave me a lot of new information that day, and she gave it to me in a way that I could take in. One of the nicest things about her, was that she did not appear to mind pausing while I made notes, considered what she had said, formulated questions.

We got to the part about choosing an oncologist. She asked me what I wanted in an oncologist and we talked about that for a bit. She told me that she could think of two oncos who would fit: one was a professor and head of department, the other a senior attending at a very young age. In terms of professional skill, she said, they were pretty much equals. I asked if either had a sense of humor. She laughed and told me to stay far, far away from the professor. So I chose the other one.

I have always had the option of switching to a different onco, and I still have that option, but so far feel no need to go shopping for another one. We are not people who would hang out together, but that’s fine; this is not the nature of our relationship. She is quite decidedly non-religious, and I am quite decidedly a religious woman. Far from being a source of conflict, this has led to some fascinating conversations during the exam. I still remember a great exchange of ideas about expressing solidarity with the poor and marginalized of society. Once I got over the idea of talking about such things while I was wearing only underpants (gowns are often not provided for exams here), it was a really good exchange.

Also, she has the courtesy to laugh at the feeblest of my jokes. What more could I ask for?

 

I have WHAT? Coda: Mastectomy

Breast cancer cellThis week I posted the last of three posts about my diagnosis with breast cancer at the end of 2003. Now it seems appropriate to post about my mastectomy. This post, originally called “Valentine’s Day 2004 or… I left my breast on the Mount of Olives” first ran on February 14, 2012. To recap: Part 1 (discovery), Part 2 (biopsy), Part 3 (diagnosis).

Fourteenth of February, 2004. There was a heavy snowfall. In Jerusalem that is almost as rare as it is in Los Angeles. Many streets were closed, and many people were afraid to drive on the streets that were open because, after all, Who knows how to drive in the snow in Jerusalem?

I was in my bed in the hospital and prepped for surgery. The orderly came to take me up to the operating room and I freaked out. No, don’t want! Stop – there must be a mistake – no, no, no! But all that was mostly on the inside. On the outside I appeared anxious (who wouldn’t be?) but rational.

In pre-surgery a male nurse came over to take report on me and check me over. He introduced himself and asked all the questions. He took a marking pen and made a huge mark on my left breast. Goodbye left breast. I made some feeble joke about not getting the wrong one, and he kindly and seriously told me that he would make sure of that. He stayed with me until I went under the anesthesia.

They wheeled me into operating room. People were bustling around doing their jobs. The nurse stayed with me. I heard two other nurses talking about the snow and wondering aloud if the surgeon would make it in. What? He’s not here yet? Please don’t tell me I’ll have to go through this again.

A surgery tech brought out the instrument tray. I looked at it with what I hoped was an interested expression on my face. It was probably more like sheer terror, because my nurse asked another one to set up the screen in front of my chin. “But isn’t she having a general?” “Please, I’m asking you. She’s looking at the tray.” So they set the screen up. But now I can’t see! How can I be sure you’ll do everything right? I can’t see! 

All of a sudden I felt a bustling, a purposefulness in the room. “Is the surgeon here?” “Yes.” Terror. Oh dear Lord! God, my God, bless his hands. Bless the work of this team. Bless me and give me strength to get through whatever comes next. Dear God, I am so afraid! Be with me now.

The anesthesiologist came up next to me and uttered the canonical phrase, “You’re going to feel a little prick now.” Excellent! The pleasantly heavy calmness settled over me, and…

* * * * *

Pain! I started panting like a woman in labor. Hoo hoo hoo hoo. My friend Jeannie, also a nurse, was standing next to me. She signaled the Recovery nurse who came over with an injection. I slept again.

The next time I awoke, still in Recovery, I was in pain again but aware of my surroundings, aware of Jeannie. Aware of the bulky dressing and the surgical drains where my breast used to be. Aware of the drain under my left arm. Aware that the surgery was over. Aware that pain could be controlled.

Aware that my life had forever changed.

My friend Aliza wrote about this day from her point of view. Please read her guest post here

I have WHAT? Part 3 – You have cancer.

Breast cancer cellI wrote Part One (Discovery) of this series last December, followed quickly by Part Two (Biopsy). It’s taken me over half a year to write the third part of the series. The biopsy was a traumatic experience for me and the way I write is to bring myself back to the experience itself. Writing about it left me more upset now, years later, than I was then. At the time I was shell-shocked and didn’t have the internal resources to really feel everything. Now I do have those resources. Something of a mixed blessing, to tell the truth.

All that is to say that you may want to read those first two posts before this one.

Almost a month after the biopsy, I received a phone call, telling me I had an appointment with the same professor who had done the biopsy. I wanted to ask if there was anyone else who could see me, but I was still too much in shock to speak up for myself. Oddly, I chose to go alone.

The appointment was in the same place as the initial mammography and ultrasound and the biopsy–the general x-ray department of the clinic. I arrived about fifteen minutes early and checked in with the very busy receptionist. I took a seat as she instructed.

I waited and waited, growing increasingly nervous and agitated. I could hardly speak when after about an hour I went up to the receptionist and asked what was happening. She curtly told me that “they” knew I was here and to take a seat and wait patiently. (Why do some medical and ancillary personnel feel that they have the right to speak to patients as if we were small children?)

After another forty-five minutes or so, I saw a nurse coming out of the hallway where I knew the professor’s office was. I went up to her. “Excuse me.” Her eyes widened. Clearly she was not used to being accosted by patients. “Do you work with Professor Tact?” “I do.” “Could you please tell him that Knot Telling is here and I’ve been waiting for a couple of hours now to hear the results of my biopsy?” Her expression changed to one of pity and she said, “Wait here,” and stepped into the professor’s office.

Now, it must be said that by this time I knew it was a malignancy. You don’t get called to an appointment with the professor to be told nothing is wrong. I sort of knew it was a malignancy from the moment the mammography technician told me to sit in the hallway and wait for an ultrasound. But still…

I am sitting at my computer in my home. This is just a memory. So why do I feel the icy fist clenching my heart and why are my breaths  quick and shallow and why are there tears backed up behind my eyes? Hey, here’s a good thing about having metastatic disease: you never again have to be afraid of hearing the words “you have cancer”. But back then I was still irrationally hoping for it to something else, anything else.

The nurse opened the door to the office and waved me in. She left and shut the door. The professor was yelling into the telephone, demanding to know who was at fault for something. The young doctor who had done part of my biopsy was standing behind his chair. I stood just inside the door, not sure if I should wait outside until he was done with his call or what. He looked up and waved me to a chair in front of the desk. I sat down.

“Tell her to come in here,” the professor shouted as he banged down the telephone and picked up my file. He turned a few pages back and forth and then looked up at me as there was a brief knock at the door and a secretary came in. “I’m busy,” he yelled at her. “You just stand there until I finish with this.”

I was beside myself. I didn’t want an audience while I got this news and I didn’t want to be an audience to whatever scolding that lady was going to receive. I was still too cowed to say anything. Professor Tact glanced at me and then back down at the file. “Okay, it’s malignant, but we knew that.”

I felt as though the top of my head was floating away. I couldn’t feel my hands or feet. I heard him yell at the poor secretary to leave and come back when he called there. I saw the top of the desk, I saw the young doctor’s pitying face, I saw the professor’s hands turning pages in my file.

I don’t remember leaving the office or the building. I remember calling my GP and telling him I needed to see him, and he said he had the results on his computer, too. I don’t remember where I went when I left the clinic, if I went home or to my GP or my priest or what.

I do remember knowing that things would never again be the same.

First Comes Breast Cancer, Then Comes Divorce by Beth L. Gainer

Beth Gainer is a remarkable woman. After twelve years of caring for her physically and mentally ill husband, she found a lump in her breast. Double mastectomy, radiation, chemotherapy… and divorce. She modestly says of herself, “I’m a writer and breast cancer self-advocate. I’m finishing a book called Calling the Shots: Navigating Your Way Through the Medical System.”

It is an honor and a delight to be able to provide another platform for Beth to tell her story.

First Comes Breast Cancer, Then Comes Divorce

“So, how is your relationship now that you have breast cancer?” asks the cancer wellness program intake worker.

My husband and I are holding hands.

“I would say it’s stronger; we’ve become closer than ever,” I tell her.

“Great!” the intake worker enthusiastically responds. “Cancer can strengthen the bond between couples. Luckily, that is the case for you both as well.”

I’m relieved. I half believe the feel-good lie I just told her.

***

Ask any of our mutual friends, and they will tell you, my husband and I are the perfect couple. As college sweethearts, we had a wonderfully close four-year courtship. Our wedding is beautiful.

20120908192813It’s the marriage that is a Ferris wheel run amok.

About a month after our wedding, my spouse develops severe OCD and paranoia. Four years later, he is diagnosed with multiple sclerosis that finds him visually impaired and even more mentally impaired. I am supportive, attending all his doctor visits and am proactive in his care. He stops working, but he refuses to apply for disability. And this is the point of contention: he won’t get the help he needs and we need as a couple. I arrange for a social worker to help him apply for disability, but my husband refuses to get help.

I am the caregiver for 12 years of our 16-year marriage. I must work two jobs to keep us financially afloat. I stay awake nights, thinking about the prospect of homelessness, not too far-fetched. If something should happen to me, I’m frightfully aware, I know we won’t survive. The stress is unbearable. I eat right and exercise, but sleep deprivation and worry and anxiety are downright unhealthy. Nevertheless, I am resolved that I will stay with him until death do us part. I do not believe in divorce.

A few months before our 15th anniversary, the unthinkable has happened: I’ve been diagnosed with breast cancer. My husband promises to take care of me, but the tragedy is he can’t and he won’t – emotionally and physically. I beg him to get some income coming in, to draw from his mom’s inheritance, just so I could work only one job while I’m going through treatments. My oncologist wants me on chemotherapy at the same time as radiation.

It’s going to be tough.

I need to work just one job.

My husband promises he will draw from the inheritance so that my life can be a little easier while I undergo treatments for breast cancer. A few days later, he changes his mind. He is keeping all of the inheritance money, he says, because he has been planning to leave me for some time now and needs a nice nest egg. I cry and beg him to stay; I can’t face cancer without my life partner.

He stays.

But I still face cancer and its treatments without a partner.

Despite my situation, I’m still the caregiver, working a full- and part-time job and getting chemotherapy and radiation simultaneously. I seek emotional help from the American Cancer Society, Gilda’s Club Chicago, and the cancer wellness program. My husband accompanies me to the latter’s intake appointment.

He goes with me for the first appointment with my radiation and medical oncologists and the first chemotherapy session. I’m so panicked about cancer, and treatment, and doctors, that I don’t even consider the fact that my new team of doctors must think we are a great couple.

Everyone thinks we are a great couple. They marvel at the sweet man who is supporting his wife.

It is all an illusion.

My spouse decides that, after these initial doctor visits, I’m on my own. He never goes to radiation therapy with me. Monday through Friday, I drive myself to radiation, then take a train to work, then take a train back to the residential area where I parked my car, then drive home. A 12-hour day. This continues for 33 days. And I come home to someone unstable day after day.

I get chemo on Thursday, so I take Thursday and Friday off from my healthily accumulated vacation days. After his first and only chemotherapy appearance, he tells me that chemo is too toxic for him to be around. I tell him, “If you are afraid of your exposure to chemo, what do you think it’s doing to me?!” He doesn’t seem to care. Years of selfishness and mental problems have added up, and the toll is heavy.

I pay the price. In some strange way, so does he.

I do radiation alone. I do chemotherapy alone. I see my doctors….

Alone.

I envy those patients whose spouses and family members have come to support them. Some feel sorry for me and take care of me during my treatment. A warm blanket. Apple juice.

I miss my husband, but things have been so bad between us, I figure I’m better off doing all of this alone. An employee from the American Cancer Society tells me, “Frankly, I don’t know how you’re even standing, given your treatment and work schedule.”

Truth is, I have no choice. I’m in survival mode; I will process what has happened to me later.
After treatment is over, I spend a year in aftershock. Our relationship is now severed beyond repair, and we are strangers to each other. We lie in bed at night next to each other, but we have nothing to say to each other.

During the year after my last treatment, I decide that I didn’t fight so hard to live just to be miserable for the rest of my life.

The marriage dies. It is already on the outs, but breast cancer hastens the inevitable. I still love my ex-husband; I always will. But breast cancer has weakened an already compromised relationship, and frankly, IMG_1289I’m glad the relationship ends. And that’s when I realize that divorce means my life is just beginning.

How has cancer affected your relationships? Feel free to share the good, bad, the ugly and the beautiful.

I am the 1% – Guest Post by Greg Smith MD

It is my great pleasure to host a guest post by Greg Smith MD, an American psychiatrist who blogs his “mental health musings” at gregsmithmd.com. We sisters in mets often feel sidelined by the breast cancer awareness movement, but Dr. Smith draws our attention to an even more marginal group: women suffering from both breast cancer and schizophrenia.

I am the 1%

Schizophrenia affects 1% of the population in the United States. Many of these patients are women. Patients with schizophrenia and bipolar disorder are 2.6 times more likely to develop cancer than the general population according to one Johns Hopkins study.

Just because they have a diagnosed mental illness, these women are not immune to the development of serious medical problems such as diabetes mellitus, hypertension, heart disease, and cancer. Some studies have gone so far as to say that merely having a diagnosis of schizophrenia is a risk factor for developing other major medical illnesses such as cardiac disease.

Breast cancer, prominent already in international discussions of illness, research, prevention, staging, treatment strategies, and cure, is no respecter of women who already suffer daily from schizophrenia.

This post is not to go through the basics of the presentation, diagnosis, staging and treatment of breast cancer. There are many resources one can study to learn more about that in as much detail as desired. It is, however, meant to make you think for just a minute about how this illness affects women whose view of the world is already skewed, whose cognitive processes are already impaired, and who are already prone to anxiety, depression and psychosis. Suicidal ideation, a risk in patients who feel pain that will not go away (physical or psychic, which may actually be a bigger risk for self-harm), may be a serious complication of an illness such as breast cancer as well and should not be ignored.

Women with schizophrenia have trouble cognitively, affectively and with their perceptions. That is to say, their illness impairs their thinking, their mood, and how they see the world.

Now, imagine that you have dealt with a major psychotic illness such as schizophrenia for two decades. You developed a thought disorder, auditory hallucinations and paranoid delusions in your early twenties, you were diagnosed with schizophrenia after an initial hospitalization that was very traumatic to you, and you have taken antipsychotic medications for years in order to control the voices that plague you and the fear that grips you every time you go out in public. You function fairly well with the help of family and friends, and you have a team of caring mental health workers who support your ongoing recovery. You are by no means well, and you have never gotten back to your baseline functioning after your initial diagnosis, but with treatment you are able to live independently and enjoy your life.

Now, in your forties, you discover a lump while taking a shower. In the fog of the steam in your bathroom and the fog of the medications in your brain, you may not fully understand what this means. You may ignore it completely. You may immediately hear the chorus of voices in your head commenting. See? We told you so. You’re in for it now. You’re going to die. You’re going to die. You may experience an exponential rise in anxiety because you had an aunt who died from breast cancer.  Just because you have schizophrenia doesn’t mean that you are immune to the sudden shock, the denial, the anxiety and the sheer terror of thinking that this might be cancer.

Now, this is where it gets tricky. Whereas a woman without mental illness might deny and rationalize and delay going to her doctor to have the new-found lump checked out (all perfectly expected responses to this very frightening experience, yes?), a woman with schizophrenia already walks a very precarious tightrope between independent functioning and clinical illness. Her balance is delicate. Any little stressor might be enough to upset her equilibrium and cause her to fall. A new physical illness in one who already deals with psychosis and disordered thinking every day may be just enough to precipitate a marked decrease in ability to perform self care and remain independent.

Once she does realize that this potentially serious finding must be checked out and she does get to her doctor, the problems don’t stop. There are issues of getting through diagnostic tests, informed consent, discussions of treatment options, explanations of surgery versus chemotherapy versus radiation or combinations of all of them.

If you have had breast cancer, do you remember the first time you were told? Do you remember the first time your doctor discussed treatment options with you? Were you in shock? Were you afraid? Did you have someone with you, a trusted family member or friend, another set of ears to hear what you simply could not hear the first or fifth or tenth time?

Women who suffer from schizophrenia are often alone, with no family members active in their lives, no loving and supportive spouse at their side and few friends who can be there for them. They hear this news with a backdrop of paranoia, hallucinations and disjointed thought that makes it very, very difficult at best to even consider any of their responses to the doctor about treatment “informed consent”.

Clear these hurdles and the treatment and recovery phases are still very difficult for these women. Some studies have revealed that there is a very real danger of violent acting out in women who are frightened and disorganized as they face potentially life threatening illness. While most psychiatric patients may be victims and not perpetrators of violence, cancer pushed coping skills and emotional reserves to the limit.

Finally, simply having a diagnosis of schizophrenia may shorten one’s life by as much as fifteen to twenty years. Adding a diagnosis of breast cancer to the mix, especially if the disease has progressed and is metastatic, is potentially devastating to a woman who has already lost much of her ability to live fully, love deeply and experience the world as most of us can.

The story of the 30%, as articulated by this blog and others like it, is very important.

The story of the 1% is often lost in the hoopla, but is no less important.