I’m Allowed

A very special thanks to Tumblr buddy lux-fiam, who guided me as I struggled with this post, and to my IRL spoonie/fake psychiatrist/professor friend, with whom I fight The Overwhelming.  

For the people who say “thanks for this.”

This post is about allowing myself and encouraging others to do cancer any way we damn well please.

Just prior to starting this blog, and in the hazy days of bouncing back from the treatment side effects, I was in a bit of a depression. As I’ve mentioned in previous posts, I had no time or energy to find blogs while I was actively in treatment and working my ass off. During treatment I was not happy with the rah-rah/pink/warrior culture that was the most prevalent form of support available (except in the diagnosed-under-40 support group, thank goodness). After I made some life changes, I was pleased to finally be able to take some time and dig around and find blogs or articles that said some of the thoughts that were more like mine, and I began blogging to interact a bit.

Around the same time I found other blogs, I had an epiphany. I was at some event last autumn with other cancer patients and expressing some anger. A fellow attendee started suggesting stress reduction methods, telling me that I must “accept” my cancer and ended her pseudo-lecture with “you can’t be angry all the time.” I was just so sick of this type of lecture; it wasn’t the first time I’d heard words of that nature. And BTW, I don’t think people mean the dictionary definition of “accept” when they tell me to do that; I think they really mean “shut up and sit down”.

There I was, a 40-year-old woman, being talked down to like a 6-year-old, because, being, ahem, a couple decades younger than most in the room, I was the youngster, the newbie; never mind I’d finished treatment already. I was not a cancer expert (and still am not), but I wasn’t a novice either, for crying out loud.

Then it hit me—why was I even listening? I can be angry if I want! I probably thought those sentences in the petulant voice of the 6-year-old me, but the minute I did, half the anger just fell away. And it continues to fall away still. By giving myself permission to be angry, sad, frustrated, etc., I become less so, especially with each post I write. Sure, anger & other bad company are still there, but in a weakened and more useful way–they inspire and motivate me, to speak up or write these posts. Whether they should be posted and sent into the blogosphere—I’ll get to that in a minute.

While I get that people who say “think positive/cheer up” and that sort of thing are well-intentioned, maybe even trying to help—the result for me is the opposite. I just get more pissed off, because in my mind, my feelings are being diminished, dismissed, blown off. That never feels good. Cancer sucks, but being told how to do cancer sucks too. Part of the crapfest that is cancer is the culture around it (especially true in breast cancer), and the culture demands conformity, and as I’ve said in previous posts, I cannot do conformity. It is great that the normal, socially acceptable warrior/pink/rah-rah methods work for the majority of folks, I can respect that. I’ve seen people swallow negativity and wondered if they could achieve better peace by letting it out, but it is not my place to tell them what to do. And I don’t want to be told what to do/how to handle cancer either.

This blog is to escape and to challenge all of the bullshit in the warrior cancer/don’t worry, be happy world that just does not ring true for me. Here, I express my thoughts in my way, no matter if they are angry, or blunt, or whatever other unpleasant adjectives can be applied to them. Here, I express my experiences of cancer without (much) self-censorship. My professional life before 2012 was very constricting, so I wanted a space where the rules, limits, deadlines, ideas were mine alone. This is that space.

I think many would tell me I should keep my ugly thoughts to myself; I should stop sending negativity out into the universe, or blogosphere. But my challenge to that attitude is this: why is expressing negative feelings automatically considered a negative action—why can it not be viewed as a positive, “working through it” technique, which is kind of the point of a lot of therapy? How can bad feelings be turned around if not confronted, if they are constantly submerged, denied, hidden politely away? And most of all, why is it assumed that expressing negativity means the one expressing it is negative on the whole, and somehow not capable of experiencing other emotions (sometimes simultaneously)?

My blogs are not read by many, but the few comments I’ve gotten here or on the other blog tend to say “thanks”, and some variation of “I thought I was the only one who felt that/this is what I’ve been trying to say.” So while many hear/read thoughts that make them uncomfortable (which might be behind some of the “get happy” suggestions rather than a desire to really help), those same thoughts provide comfort to a few. I remember all too well last October not knowing what search terms to use to find people with opinions similar to mine, and I remember all too well how relieved I was to stumble, bass-ackwards, onto blogs that did express such opinions. So if my blog is just one more place someone can stumble upon and find relief, then my own victory over anger & company is nearly complete. I hope your victory can be found here too.

How to Swindle a Breast Cancer Patient

Last September in my gynecologist’s office, a conversation went sort of like this:

Her: Did you do the BRCA testing?

Me: Yes, it was negative.

Her: Good.

Me: Why? I still got cancer!

Her: Yes, but it is good to have all the information.

It is true; I dutifully did the BRCA test as soon as I started treatment, at the urging of practically everyone I came into contact with in those first confusing weeks after diagnoses. With such strong family history (my aunt, my maternal grandmother, her sister, other assorted relatives, all had breast cancer), I was SURE I would get a positive result. I reasoned that with these positive results, the discussion could then proceed to having prophylactic bilateral mastectomy, as well as an oophorectomy, regardless of how my chemotherapy worked in the effort to shrink a tumor. (An explanation-my tumor was large and my breast small, chemo had been strongly suggested as the first piece of treatment, otherwise, surgery would have been difficult in terms of having to remove so much skin and tissue.) I wanted to get all my strategizing done; I wanted the results before I had to plan surgery, so I would know what I was facing, the most effective way of scheduling the surgeries, etc.

Incredibly the results were negative. I remember the testing coordinator saying that some women are relieved for a positive result, because then they “knew” and the “decision” was easier. With my negative, I could still do the bilateral mastectomy if I wanted, it just wasn’t as urgent, but you know, I could do it for prophylactic reasons. I did not think that way at all; I was glad it was negative, and I ultimately went with a lumpectomy, because I responded to chemo so well that my tumor was undefinable by the time I reached the surgery phase of my treatment plan.

I forgot about the BRCA testing, or shoved it to the back of my mind as I finished all the rest of treatment, and did not really think about it again until the conversation happened with my gynecologist. That conversation about the testing really bugged me. I do not have children and will not have them, so even if I had the mutation, I would not pass it on (I’m an only child), so why did I do it? Then last week, I read Five Lessons I Didn’t Learn from Breast Cancer (and One Big One I Did) by Shelley Lewis, who has graciously allowed me to include this reference to her book for this post. Ms. Lewis includes a section raising some questions about the true number of women, specifically breast cancer patients, actually impacted by this mutation. Her book inspired me to do a little research on my own.

At first all I found were the usual things, that a woman with one of the mutations is anywhere from 40% to 70% more likely to get breast and/or ovarian cancer, get it earlier, get a recurrence, and more likely to not survive. However, according to the Komen website, in the U.S., only one in 400 to 800 people in the general population actually carry a BRCA mutation, AND they state quite plainly that like all gene mutations, it is rare. Then, on the National Cancer Institute website, I found this little nugget: “Although such cancer susceptibility genes are very important, highly penetrant germline mutations are estimated to account for only 5% to 10% of breast cancers overall.”  Ooooookkkaaaayy, what about the other 90% of us? Well, the Cleveland Clinic states “(m)ost breast cancer is actually considered sporadic (occurring by chance). BRCA gene mutations are actually responsible for an extremely small number of breast cancer cases. So the chance to have a BRCA mutation is low, but when there is a mutation, the chance to develop certain cancers is high. Other causes of breast cancer include lifestyle and environment. Most breast cancer patients will never know the true cause of their disease,(emphasis mine). Once again, the question of how the hell did I get cancer goes unanswered (not that I really expect one).

Along with these interesting tidbits, I learned from the National Cancer Institute that the mutation is responsible for disease in 45% of families with multiple instances of breast cancer, such as my family, so I guess we fall into that 55%? Furthermore, it is possible my test results were a “false negative”, and there is no way to determine if it could be a true negative, or if it is some other gene mutation not detectable. Argh, I already got one false negative in my breast cancer case, please don’t let this be another!

So, this gene mutation seems to take up quite a bit of space in conversations about breast cancer, yet it only accounts for 10% as a cause? I find this odd, since it seems that most of what I find about breast cancer tends to cater to the larger percentages in the disease—the estrogen positive, the over 60 years old, etc., all those categories I don’t fall into (see my earlier complaint about that). What is with the push to get all patients to do the test? Is it to encourage more surgery? Oh right, it is to line the pockets of the company that does the test. And I know there is enough ill will from some breast cancer bloggers toward Myriad about the fact that this company is the only one that can do the test; I’m not even going to dip my toe into that issue.

I regret that I even bothered getting the test. I would not discourage anyone from getting it, but I don’t encourage it either.

Rant: (please do not read if you fear negative emotion)

An angry woman is…Unattractive? Empowered? Humorless? Got into a little back and forth last month commenting on an article. I agreed with said article that the “save the ta-tas” slogan can be offensive. Yes, the intent of the slogan is to remind women to get mammograms to detect breast cancer, but is it to save women’s lives or their breasts? To me, those 3 words are pretty clear which is to be saved—yes I know that people behind the slogan would say mammograms save lives, and that is their intent, blah blah blah…but that’s not what it says. I know some people don’t have a problem with it, but I wish the person who responded to my comment had not suggested I get counseling!

Why is it that if a woman (and anyone really) expresses anger or other negative emotions, (and is anger always negative—can it not be made positive?) therapy and/or drugs are automatically suggested? ALL feelings are valid, and I think my anger (which is quite common in cancer patients recently out of treatment), motivates me to action. How can the status quo be challenged unless we act, demand answers? And, yes, the status quo of how the fight against breast cancer certainly needs to be challenged.

So, what is wrong with this desire/motivation to act and challenge? I know from my conversations with other cancer patients (in my support group, see I AM doing therapy) that being angry or depressed or bitter or whatever is valid and ok. This societal pressure of “think positive” or quash the negative is so oppressive! Why are some people uncomfortable with anger? Why do they think people who experience anger cannot also experience happiness or humor, and need counseling? Do they suggest counseling to make the angry person feel better, or themselves? Probably the latter. I pity people who think life should be nothing but positive emotions. Didn’t someone once say if you aren’t angry, you aren’t paying attention?