when people would rub my shaved head, without asking
So I’m addicted to Top 10/20/100/500 lists. Every time Rolling Stone magazine lists top x amount hip hop songs or albums of the rock era or guitarists, I’m all over it. When VH-1 shows top one hit wonders of the 90s or whatever, I tune in, even if I’ve seen it before. So the other day I was watching for the umpteenth time top shocking moments in music—you know, like that time Ozzy bit the head off a dove, or when R. Kelly got arrested for sex with a minor, and all the horrible deaths of icons. Of course, high on this list is that time Britney Spears left rehab and went directly on to shave her head, and then a few days later, attack a photographer with something (an umbrella maybe?) looking especially crazy with that bald head.
I thought, man, when I shaved my head after my second chemo infusion, I wish I’d had the energy to reenact that scene, maybe record it, put it on Youtube. In fact, a friend of mine, in an effort to cheer me up when I called him to say “well, my head is shaved,” said, “good, come over and let’s reenact that time Sinead O’Connor tore up a picture of the Pope on SNL.” If I had not been so nauseous all the time, I totally would have done it. I LOVE to rip pieces of paper in half and yell dramatically (still do, but now I have hair). Lots of my lesbian acquaintances loved my G.I. Jane look, and the gay men loved it too. One man rubbed my head and said joyously, “you look like a little boy!” Argh, flashback to kindergarten, my mother always kept my fine, thin hair short, and a little boy said to me one day, “you look like a little boy!” I cried and cried (give me a break, I was 4). The man’s words sent me spinning back to that awful moment for a split second, until it dawned on me “oh wait, this is a compliment, he likes my boyish new look.” Yeah, that was definitely one of my stranger cancer moments.
As I progressed from little kid to teen, my fine, thin hair became coarse, curly to the point of bushy-like so I kept it long to weigh down and eliminate some of the curl. It was half way down my back in college, and as I grew older, I kept it trimmed, but a strange thing happened. It seemed to get to my shoulders, and stop growing. No matter how long I went without a trim, it just refused to get any longer, to get back to my college era glorious length. I worried as my hair returned after cancer if my hair would do that reach-a-point-and-stop thing again. And I desperately need the length. When my hair finally reached the 2-4 inches length, I began to resemble Willy Wonka-era Gene Wilder. I’m a bit past that with the hair growth now, but it is not as long as it was when I shaved it, and it is still very curly. I look forward to that going away.
Hair is a big deal in cancer world. Some women fear the loss of their hair more than the loss of their breast(s). Not I, but that’s another post. I heard a lot of “it’s just hair, your health is more important, so you have to endure it to get the healing chemo” type of comments. For me, the issue wasn’t the actual hair, it was what it meant: my normal, pre-cancer, healthy life. Before cancer, the first thing I did each morning as I woke up was throw it into a ponytail to keep it out of my face as I made coffee, walked the dog, etc. After I shaved it, each morning I sleepily reached up to put my hair in a ponytail, and was immediately shocked into the reality of “I have cancer”. Without my hair, it was like I never had even a split second of respite from the knowledge of cancer and my mortality.
The unruliness of my freshly re-grown hair, along with numerous other marks and pains residing in and on my body, are constant reminders of what happened to me, and the fact that it might happen again, and if and when it does, that it might kill me. I did my best at the time to be lighthearted about it, to joke that I’d become Britney, Sinead, and Demi, but as I got further along in treatment and the “whole cancer thing”, my sense of humor about it diminished. Well, my sense of socially acceptable humor, anyway—I still like tumor humor, but some folks, especially those not directly involved with cancer, don’t like it. So thanks to all y’all who make “you look great” comments about the newly shaved cancer patient’s ‘do, but remember some patients don’t like the look, and I don’t think you’d be willing to shave your head unless you had to.
P.S. Attention Film Industry, Hollywood: When you make a movie including a character with cancer, it’s “nice” they shave their heads (ahem, being a tiny bit sarcastic here). But understand that chemo causes HAIR LOSS, not BALD HEAD. That means all hair. Yes all of it. Even the hair on your special place and your eyebrows. So at least have actors thin out the eyebrows for crying out loud. I’m looking at you Joseph Gordon-Levitt (50/50) and Emma Thompson (Wit). Both great actors (I love you Joe!), but grow a pair and really show us hair loss. And you should probably keep your pants on for the role.
I post on a number of blog sites, and I recently posted—on all the sites I use—Art Therapy and Mindfulness Training Lower Stress in Breast Cancer Patients. Basically I posted a link to the article on HuffPost, along with the comments I left on HuffPost’s comment section. I’ve experienced some strange reactions, which I might discuss in a later post. I may have gone off on the article “half-cocked”, but I still stand by my comments.
I am not against lowering stress, using meditation, art, yoga, or anything anyone wants to do/indulge in, to feel better, cancer patient or not. I do some of these things and more, which works for me. But I must express what bothers me about the article and its presentation, (not the methods or the idea of de-stressing). Here are the first few words of the article: “Stress is especially dangerous for those with cancer — it’s even been tied to lower survival rates…”
I don’t doubt that this is true…hasn’t it been said for years that less stress is better for your heart, your immune system, your…everything? So less stress should also be beneficial to cancer patients….and some articles even note all the reasons we are stressed. Well, duh-huh. It’s like this report my friend told me about, which pointed out that women who want children and experience failed IFV attempts are often more depressed/stressed and consequently more likely to become ill and/or die than women who successfully had children. Captain Obvious strikes again. Who the hell awards grant money for this stupidity?
To get to the cancer-n-stress report I am babbling about, you have to click a few times to get to a page written in medical-ese, which is a little challenging for non-medical professionals to understand, and the casual reader is not going to jump through these hoops. They will only see the sound bites. And that is why I am worried. Those words—stress as dangerous to those with cancer—good grief. Guess what is really dangerous? Cancer!! Know what makes cancer patients stressed? Cancer! Know why cancer is so stressful? It kills!! How about I point a loaded gun, safety off, at your head and tell you to not be stressed?
My point is that it is natural to be stressed in a stressful situation, and in the beginning I felt an unreasonable pressure to be a “good cancer patient” as a result of interactions with people I know and exposure to various news articles constantly lecturing why stress is bad and how to get rid of it as if it were unnatural, and that all of human society must collectively strive to obliterate, not just alleviate it. I used to watch that show Charmed, about three good witches charged with protecting innocents with their magical powers. In one episode they upset some cosmic balance and every one had to be happy all of the time, and the merest hint of an expression of a slightly negative emotion could get a person arrested/killed…except the characters could not talk about death, because everyone was acting like it did not exist.
Sometimes I felt like that television episode in Cancer Land, especially the cancer swathed in the cheery pink ribbons. When assaulted with this don’t worry be happy attitude, I felt as though my legitimate emotions were being dismissed—that I was being dismissed for not getting on the rah rah train. I no longer feel this pressure, because mainly it was self imposed because I thought I needed to fulfill everyone else’s expectations. Now I feel: fuck your expectations! I am ALLOWED to feel the bad along with the good, and so are you. I know I am not the only one who just gets more stressed when told not to be stressed. For a much better expression of this concept (because I think I am starting to suck here), please check out The Human Side of Cancer, Jimmie C. Holland, M.D., chapter 2, The Tyranny of Positive Thinking.
But worst of all, those words, stress is dangerous to cancer patients, once again suggest the notion that anyone can exert control over cancer, or life, even. One of the worst interactions non-cancer patients have with cancer patients is when “they” start asking those slightly accusatory questions…did you smoke to the lung cancer patient…did you get a pap smear to the ovarian cancer patient (which does not detect ovarian cancer, but that question was asked of my friend nonetheless)….did you drink too much in your youth/do you exercise/what is your diet like/are you stressed—to any type of cancer patient. Those without cancer wish to almost blame us, to put “us” on the other side of an imaginary line so “they” can remain safe, and therefore unlikely to get cancer. I know, I was once a “they” or an “I”. “I” thought quietly to myself, “I” do or don’t do xyz, “I” am safe, “I” won’t get cancer. WRONG! I’m sure everyone can think of that one anecdotal situation of someone so healthy, running miles every day, happy as I don’t know what, etc, and the person still got cancer. It happens, we are powerless, and the randomness and meaningless is still a struggle for me, as is the lack of control, but that is a whole other post!
The cause of cancer is unknown, which is why people still get it. And it’s nice some medical research is advocating for recognizing the health benefits of less stress—hell if it results in medical insurance coverage of yoga classes or whatever, wonderful. But what would really relieve my stress is the knowledge there will be better, easier-to-take treatments, should my cancer return. Less nausea = less stress. Less burnt skin = less stress. No more disfiguring surgery = less stress. Better yet, find a way to PREVENT cancer altogether. That is why I get so frustrated when I see a report like this, in which money and energy were spent studying something that seems so damn obvious.
We’re all so programmed to minimize our experiences. I hear it a lot among women with breast cancer. Whether it be in a discussion board or face-to-face conversation, it doesn’t take long for someone to say “I’m just dealing with hair loss” or “I’m only just stage two.” I think there are two sides to this coin. On one side, we know that someone else always has it worse. And, on the other side, we’re relieved that we’re not that someone else.
Even at Stage IV I can preface a statement with “I’m just.” I’m just taking Tamoxifen and haven’t had to deal with the horrors of chemical warfare; I have had no surgery and still have my breasts. I just have metastasis to two spots in my spine, not every bone in my body. I just have some spots on my lung, but not in my liver. …
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This will probably seem like an odd post, but I’m going to present a snippet of my afternoon from two different perspectives for no other reason than “just because.” Thanks for indulging me.
Across the room, a girl sits in a recliner with a small table beside her. She is sipping a large cup of tea. The tea bag tag dangles gently over the edge of her cup. The girl stares off into the distance and a smile crosses her lips. What is she thinking about? Perhaps she is remembering a lover from her college days? Maybe she is picturing a basket of puppies?
Wait… judging from a frame most would describe as thin and a belly that is unmistakably large and rounded, it’s clear that she must be pregnant — she must be thinking of the baby growing in her womb. Yes.
Her eyes light up as…
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Thank you, Tracy at FEC-THis for nominating me for this award. I am shocked; I have not been blogging long, and I am touched that I am inspiring anyone at all.
From what I understand, I am to post about this award and the blogger that nominated (see above), tell 7 (random) things about myself and nominate & notify 15 other very inspiring bloggers. Here goes!
1. I am an only child.
2. I have no children, and have never wanted any.
3. I love punk rock, classic rock, alt rock, and hip hop.
4. As much as I wanted to move to the big bad city when I was in high school, I have remained in my small town//rural area, and I love it.
5. A talking tropical bird with limited vocabulary once bit me on the foot.
6. I am a liberal, but I think I look conservative (few piercings, no tattoos, despite coming of age at a time everyone got them to express “individuality”).
7. As much as I kick against the idea that because I had cancer I was supposed to learn a big life changing lesson, I did actually learn that while I cannot expect life to be all rainbows and puppy dogs after cancer, I can sure as hell work to make it NOT miserable. I spent the last year excising things, people, and situations that made me miserable. So I am going through a mini-mid-life crisis in which I have reverted to behaving like my late teen/early 20s bratty self, and I LOVE it.
Since I am still new to blogging, I hope I am following proper etiquette in my nominations:
Lindsay Sarah Interrupted
Riding the BC Roller Coaster
My cancer journey
I Can’t Complain Any More Than Usual
My Eyes Are Up Here
The Pink Underbelly
Journeying Beyond Breast Cancer
The Sarcastic Boob
Susan’s Blog from Advocates 4 Breast Cancer (A4BC)
Since I don’t think I could have said it any better, I have stolen (with permission) the post below from the always-amazing AnneMarie.
Yesterday, I had front row seats to see what happens when a story hits the media during a slow news cycle. People are tired of hearing about the fiscal cliff which I prefer to call by its “formal name.” Does anyone recall the word? Correct!
No matter. It seems we are ready to hang glide but I’ve been too busy running around a two square block area in San Antonio to pay much attention to any news.
San Antonio is lovely. The Riverwalk is charming. San Antonio is bustling. There are researchers and clinicians and all sorts of folks in the breast cancer arena, from all over the globe, in that same two square blocks.
I am here as a patient advocate sponsored by…
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Found this on another blog:
1. Before recommending treatment options, do some research, and be sure not to imply chemotherapy, surgery or radiotherapy etc are unnecessary or pointless.
Its tedious having to feign interest in a friend’s well-meaning rant about alternative treatments that have no evidence suggesting their effectiveness combating cancer. Cancer patients go through hell to be cured. The usual treatments (listed above) are the usual treatments because they are known to be effective. Implying that what we go through is pointless or unnecessary is offensive, upsetting, ignorant and exasperating.
2. When we’re talking about our experiences, starting rambling about people who’ve died or are dying from cancer is not an appropriate segue.
This should be obvious, but it’s not. People do this shit. Once you’ve been diagnosed with something like cancer you are constantly aware of your own mortality and the possibility of an early death. We are sorry you’ve lost/are losing people, but directly connecting death to what we are going through isn’t really helpful or what we want from friends most of the time.
3. Just because of what we’re going through, doesn’t mean we suddenly lose interest in what’s going on for other people.
You are our FRIENDS. We care about you and want to know what’s going on in your lives MORE THAN EVER. When you’re sick it’s easy to become separated from the normal world. We want very much to feel involved and connected in the lives of the people important to us.
4. Don’t treat us like we’re fragile.
Well, we might be physically. We might be tired a lot. But we won’t break if you share a bit of bad news with us, or ask a hard question about what’s going on with us. Use your common sense. Be sensitive, but there is nothing more frustrating than people very obviously beating around the bush with sensitive issues like our prognosis or pain or suffering or other nasty stuff. With the really scary things, sometime no one asks, so we assume no one wants to know and we never get to talk about it.
5. Don’t act scared around us.
Yes, we’re the same person.
No, we aren’t judging you for angsting about homework or something.
No, we aren’t about to fall to the floor and die right in front of you.
No, cancer is not contagious.
6. Don’t stare at our bald heads or lack of eyebrows when you think we’re not looking.
You don’t have to be weird about it. Mention it. Rub our heads. But don’t turn our appearance into the elephant in the room. We get enough of that crap from strangers in the street. And yes we will notice.
7. If you’re not sure about how to approach a topic with us, or if you can hug us or something, anything, ASK.
We UNDERSTAND that there is no instruction manual for our friends and family, just like there is no instruction manual for US. No one knows how to deal with this. And we get that. So just ask if you have a question.
8. Remember that cancer does not discriminate.
A lot of cancer just happens. People who never smoke a day in their lives get lung cancer. Virgin Mary types get ovarian cancer. Rich, poor, good, bad, vegan, carnivore, natural, chemical. Every lifestyle can end in cancer. I’m pretty sure most do.
9. Implying it was somehow our fault or in our control is not ok. At all. Do not.
Don’t “what if” or “maybe if you hadn’t” or “it’s because you eat meat” or “maybe if you didn’t use deodorant” or other insensitive crap. There are infinite environmental, biological, and genetic variables. We all produce thousands of cancer cells every day. It just takes one to be missed.
10. If we say we don’t want to talk about it, drop that shit.
Great more money, time, and energy wasted on this non-sense. Before I got cancer, I believed in positive thinking, etc. But I am tired of this pseudo science. I have been through cancer treatment and dread recurrence. I AM STRESSED about that, and the fact that this stress might cause recurrence causes even more stress for me. Please read Barbara Ehreneich’s Bright Sided, first chapter, she lays it out much better. I refuse to believe stress caused my cancer or will cause it to come back. It is equivalent to blaming the patient. Spend money, time, and energy finding the real biological causes of cancer (hello, environmental pollution caused by huge corporations that lobby our government to look the other way as they pollute the air?), and stop placing this unnecessary responsibility on the patients. We got enough on our plates, ya dig?