New York Times Opinion Piece on Breast Cancer Screenings

Hi, everyone. I am very curious to know what you all (in particular, you women and health care professionals out there) think about this NYT opinion piece on breast cancer screenings.

http://www.nytimes.com/2013/12/30/opinion/breast-cancer-screenings-what-we-still-dont-know.html?smid=fb-nytimes&WT.z_sma=OP_BCS_20131230&bicmp=AD&bicmlukp=WT.mc_id&bicmst=1385874000000&bicmet=1388638800000&fblinkge0&_r=0

I know that if you are reading this, you may be more interested in what I think about it, but honestly, I'm still not 100% sure. I place myself in the estimated 0-3% mentioned in this opinion piece whose lives are saved by regular screenings, which does sort of make me lean toward a low threshold approach. In this approach, women regularly get mammograms and red flags are pursued, meaning additional screening measures. Arguably, this more traditional approach has saved my life. I did not end up here in the "Chemotherapy Suite" at Carle Hospital (I'm actually writing this as Taxol is dripping into my body) because I found a lump two years ago. Rather, I'm here because of regular screenings and follow-ups to monitor what doctors initially thought might be just a benign calcification. Although the cancer is in my lymph nodes, it was still caught relatively early via mammogram and sonogram.

At the same time, I DO see both perspectives, particularly when we consider the money involved and the physical and psychological effects of the procedure and false positives on women and their family members. In general (abstracted from my personal experience), I am not a fan of overtreatment and what the author identifies as overdiagnosis. So, I really would love to hear from people, even as I sit here getting chemo.

On Pseudoscience and Magical Thinking

Ah, Facebook. I do love it. In fact, I go there every day. But as much as I like reading friends’ updates and posts, sometimes I see things that just piss me off. Here is one of those things: http://premaseem.wordpress.com/2012/12/19/how-to-avoid-cancer/. Do click on the link and take a look at this if you have any interest in reading more of this blog post. It is titled “How to Avoid Cancer,” and it is posted by an adventurous mountaineering Sun-certified Java programmer. (Critical reading tip #1: You have to scroll all the way to the bottom of the blog page and click on “About Me” to learn that the person telling you how to avoid cancer doesn’t have a f**king clue what he is talking about when it comes to cancer prevention and treatment.) But alas, this blog post is making the rounds on Facebook along with scores of other questionable claims. When a Facebook friend of yours shares this post and you view it in your feed, you can see the title of the blog in the preview: Premaseem.wordpress.com. However, you have to actually go to the person’s blog to see the subtitle: “A place for different dimmentions of my thoughts.” (Critical reading tip #2: Um, if you really need a critical reading tip here, then start by brushing up on your knowledge of word roots. Did he mean dementias or dimensions? Hmm....)

OK, assuming you have now familiarized yourself with the blog post at the link above, let me just say this: WTF?!  Okay, actually, I’m going to say more than that. First of all, I am all about avoiding cancer. In fact, throughout my adult life I have actively participated in eating a good diet and exercising in part because I’ve thought they might help ward off nasties like cancer. But this blog post really irritates me, and here’s why: It’s pseudoscience. What’s more, it’s not even well done pseudoscience. It’s actually not even authored by the blogger; rather, he has lifted it from an email that has gone viral in the etherworld (more on that later).

The advice in the post actually sounds pretty good, even sensible at times. I mean, the first sentence includes the name “JOHNS HOPKINS.” It must be reliable, right? (Critical reading tip #3: Ask yourself, is it a representative of Johns Hopkins giving us advice on how to avoid cancer, or is it just a random outdoorsy computer programmer telling us these things while using the name “Johns Hopkins” in upper case letters?) While some of the suggestions in the “how to avoid cancer” post may indeed help some people prevent cancer, my initial thoughts when reading it were a) Hello! I would like references to actual research, including clinical studies and an explanation of those studies’ research methodologies; and b) Sometimes shit like cancer happens anyway.

One of the things that ticks me off most about the “how to avoid cancer” post is that it smacks of blaming the victim (see #4 on the list). Again, sometimes bad shit happens, even if you eat a healthy diet. This blame-the-victim approach is central to pseudoscience, and resembles the same sort of discourse that permeates educational policies and practices for historically marginalized students (most notably, children whose families do not make much money, children who are black and brown, and children who are multilingual or becoming multilingual). These discourses assign deficit to biological, social, and/or cultural attributes of the victim of whatever issue or “problem” has been identified (e.g., illness, poverty, school failure).*  In addition to blaming the victim, other signs of pseudoscience include cherry picking research findings and embellishing them with stories to suit the point being made, distorting research results, and referring in vague terms to recognized research institutions (JOHNS HOPKINS!) or researchers without actually providing specific citations of research studies or full reference information. As I tell my graduate students when they read research and begin thinking about their thesis or dissertation work, “you can’t just make shit up.” That’s called magical thinking, and it is harmful.

The “how to avoid cancer” post further reveals the dementia of magical thinking by recommending treating cancer with diet rather than chemotherapy and radiation. Will I continue to eat a healthy diet through cancer? Um, yeah. Duh. Just ask my friend Gentzy, who I recently had an inspirational conversation with about a cookbook comprised entirely of recipes for green smoothies. But let’s be very clear: If I decided to treat my cancer with dietary changes alone, such as dramatically increasing my intake of green smoothies, and to forego chemotherapy and radiation, I would probably be dead within a year. Yes, good diet rocks. Yes, chemotherapy will negatively impact my immune system during treatment. And we would probably do well to work for environmental changes (such as curbing unchecked pesticide use) that can help prevent cancers. I have also gotten tested for BRCA (the “breast cancer” gene). However, it is simply not helpful for me (or anyone else) to speculate as to what caused my cancer. What is helpful is to critically attend to and weigh the findings of years of cancer research. It is also helpful to fight for more funding for cancer research. Such research has yielded new drugs (some of them very new) targeting specific receptors on breast cancer tumors to eat away at the cells with minimal systemic side effects. Such treatments include biological therapies, such as Herceptin and Perjeta (Pertuzemab) (both of which I am getting), which work in concert with chemotherapies like Taxol and Adriamycin. And—NEWSFLASH!—you will not find them on the shelf at Whole Foods. You cannot mix them into a smoothie no matter how good your blender is.

By the way, a quick Internet search using the terms “johns hopkins cancer diet recommendations” in your search bar will lead you to the website of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University. There Johns Hopkins Medicine provides a statement regarding the email (and social media) hoax about avoiding cancer: http://www.hopkinsmedicine.org/kimmel_cancer_center/news_events/featured/cancer_update_email_it_is_a_hoax.html. In some ways, a hoax such as this doesn’t deserve as much page space as I’ve given it. And yet, it still makes the rounds on Facebook and gets liked and shared by people who should know better.

For those of you interested in more reading on pseudoscience, as related to the swell of interest around advances in neuroscience and how they are taken up in the popular imagination, you might find the following article to be a good read: http://www.newstatesman.com/culture/books/2012/09/your-brain-pseudoscience.

*If you are interested in understanding and unpacking deficit thinking in the field of education, you might start with Richard Valencia’s (2010) book, Dismantling Contemporary Deficit Thinking: Educational Thought and Practice, published by Routledge. In his book, Valencia calls out Ruby Payne’s (unfortunately popular) work on education and poverty, showing how it is not based on rigorous research, but rather on pseudoscience.

Spandex Ballet

Well, I wasn't sure if I was going to be able to pull it off, but I played in the adult 4v4 soccer tournament at Soccer Planet in Urbana today! Here's a photo of my team, Spandex Ballet. No, none of us are sporting spandex, but in retrospect we could have gotten some snazzy red spandex body suits. If I'd already lost my hair, I would have looked totally badass out on the pitch!

Spandex Ballet, at the Jingle Balls Adult 4v4 tournament at Soccer Planet

We didn't actually win any games (although I was able to get our team on the scoreboard in one of them), but we had a hell of a lot of fun! Today was one more bitch slap at cancer, among many already, and many more to come. I'm not sure if The Beckham Wannabes or Flop of Ages won the tourney in the end, but no matter. I am very appreciative to all of those who came out to play, both on my team, and on the other teams.I owe a special thanks to Graham Berry and Ryan Cronin at Soccer Planet who helped make this happen. I really wanted to play, and they rallied several other players from the over 30 and over 40 crowds to join teams so that the Old Folks' division of the adult 4v4 could happen.

I find that it's not only the everyday things that help (like my mom doing my laundry, Kathy and Zanne coming to chemo, cards from friends and family, Tamra knitting me a hat, chatting with Betsy on the phone, Craig staying late at Evan's soccer tournament so I could go to bed, Patricia making Christmas breakfast.... The list goes on and on and on). It's also having events like this with people I know and love, and even others who I only vaguely know, coming together to just have fun and do normal things. Okay, I know what you're probably thinking. You're thinking, "Really? It's normal for a bunch of 30- and 40-, and a few 50- somethings to play in a soccer tournament with team names like Flop of Ages and Spandex Ballet?" This make surprise you, but yes. Yes, that feels totally and completely, and joyously normal.

Waiting with Patience N. Hope

So, my third infusion today went just fine. (I could write all about the immediate side effects on my digestive system, but let's just say this will likely be a horizontal evening for me.) The last three days have been a mini-drama regarding a suspected infection in or around my port. I had some pain and tenderness around my port, and then on Saturday it began to turn red. They put me on an antibiotic that would kill staph (including MRSA, which has been going around), and things are looking clearer now. This is a good thing, as I did not want to have the port removed! But between going to the walk-in clinic on Saturday, getting my pre-infusion blood draw and waiting for lab results, waiting for the pharmacy to prepare the chemo, and then waiting for the surgical oncologist to come and examine the port site, I've experienced a lot of...well...waiting recently.

My friend Zanne came to hang with me at chemo today, and before she came I texted her to let her know that my chemo hadn't yet started. I told her was waiting with Grace (Zanne is the one who gave me the little dog named Grace that I take with me to my treatments), but that I could really use some patience! Well, Zanne showed up about 30 minutes later with a little kitty to go with Grace. Meet Patience N. Hope:

 

And here's a close-up of Patience and Grace (and me!) together at the Carle Cancer Center "Infusion Suite:"

I will tell you that Patience was much needed today. Because the surgical oncologist wanted to examine my port and potentially remove it surgically if it was infected, they told me I could not eat at all just in case I needed to go under general anaesthesia this evening. That means that I had NOTHING to eat all day until I saw the doc at around 2:30 this afternoon. As soon as I got the good news that the port looks okay, I wolfed down a bagel with lox and cream cheese and a berry smoothie, courtesy of Craig! And yes, that was worth waiting for.

Better Living Through Chemistry!

It’s always fun (perhaps even human) to seek patterns, and so I’ve been on the lookout for patterns of chemo effects on my body now that I’m halfway through week two. Actually, it’s probably still too early to find a whole lot of patterns, but if the first two weeks are any indication, mild nausea and other digestive ailments will likely characterize my first couple days post-infusion over the coming weeks. But I am quickly learning how to manage this. For example, I keep the anti-nausea meds with me at all times because holy cow they work like nobody’s business!!  I’ll just be going about my regular day, making a sandwich or grading papers, and I’ll get a sudden wave of nausea faster than you can say “Prochlorperazine.” (Well, I can say prochlorperazine pretty quickly now.) And it’s a weird nausea. It’s not an “uh oh, I might be coming down with something and could be driving the porcelain bus in a few hours” sort of thing. Rather, the nausea is not there, and then—boom—it’s there; an immediate “oh-crap-I-think-I’m-going-to-vomit-now” kind of thing. But magically, I pop a Prochlorperazine pill or an Ondansetron tablet, and the nausea slips away as fast as it came.

Unfortunately, those drugs don’t work for abdominal cramping. For that it’s pretty much Tylenol. However, I’d take cramping any day over vomiting, so it’s really not so bad, and I can control it somewhat by eating milder foods. This did not stop me, however, from eating a molten chocolate lava cake that Craig made yesterday evening for Nate’s birthday. An hour later I was doubled over on the couch with a major cramp, but c’mon—molten chocolate lava cake? It was totally worth it.

In terms of side effects, I did have a feeling yesterday that I didn’t have last week that I can only describe as being in a toxic fog. The Mayo Clinic actually calls this “chemo brain,” and you can learn all about it at this link sent to me by one of my mom’s friends who is a breast cancer survivor: http://www.mayoclinic.com/health/chemo-brain-symptoms/MY01278. Yesterday, I felt this way—like I was partially floating or not all there. I wasn’t dizzy or loopy or anything—just spacy and unfocused. I actually went to work and participated in a meeting, and it appears that I may have successfully convinced my colleagues that I was partially lucid. According to the Mayo website, doctors aren’t entirely sure what causes chemo brain, but, gee, I have two suggestions: 1) Hello! Insomnia! The one thing that has been interrupted more than anything else with regard to my daily living is my sleep. 2) Also, maybe it’s the fact that my body is now more like a toxic waste dump than the “temple” I like to treat it as in my regular life... Okay, true, “temple” is probably pushing it, unless having Ben & Jerry’s 5 nights a week is typical temple fodder. Regardless, with the chemo drugs and all the other pharmaceuticals I have coursing through my veins, I keep thinking that if an EPA inspector happened to show up on my doorstep, she or he might just shut me down, or at least slap me with a hefty fine.

But in the end, I’m okay with being a walking toxic waste zone and the side effects I'm coming to recognize and manage, knowing that the drugs are doing their work on the cancer, picking away at the tumors cell by cell. As Craig cheerily responded the other morning after I popped a symptom-killing pill, “Better living through chemistry!”

Second Infusion

I had my second chemo infusion today (Taxol only), and everything went smoothly. To be honest, I don't have a whole lot of news to report. I keep telling myself I'll try to get some work done while I'm sitting there hooked up to the IV, but the Benadryl that the nurses give prior to the Taxol seems to have different plans. I can't imagine being able to do any writing or reading with a Benadryl buzz, but luckily today I had my friend Kathy there to keep me company. You're awesome, Kathy! Catching up with you made the time flow more easily.

My side effects remained mild last week and today, which I'm thankful for. I've exercised regularly this week, including going XC skiing in the park by our house. However, I went very slowly for a very short distance, and just felt wiped out; like I could just stop and fall asleep on the spot. After I got home I was able to nap, but my worst side effect so far came yesterday evening, when I got body aches and a persistent head ache. It felt very flu-like, but by morning I was fine. We'll see how the meds and their effects build up in my system, but so far, so good!

New Do #1

OK--here I am sporting New Do #1 (I figure New Do #2 will be when I get my head shaved, although I'm not sure if that actually counts as a "do"):

I'm also including a couple photos my mom took at Kane & Co. in Champaign, where I get my hair cut. Alex Thompson, pictured on the right, is my hair stylist, and he is simply awesome. He allowed extra time for this, knowing that I wanted to put some thought into it (I haven't had short hair in about 15-20 years!). 

         

Not only that, but Alex has offered to shave my head for free and without an appointment when that time rolls around, even if the salon is closed and he needs to open it up for me. It is people like Alex, and so many more, that make this process easier. I tell you, I'm feelin' the love people, from both near and far.

Side Effects and Weight Gain Pancakes!

Several people have asked me about side effects from the chemotherapy. It's actually too soon to tell exactly how my body will respond to this, but I'll try to give you all an idea of how I'm feeling. First off, yesterday and today I've simply felt GREAT! I have felt energetic, I've exercised, and have not had any stomach upset. Woo-hoo! Let's have a collective fist pump for that!

Actually, the Herceptin and Pertuzemab are pretty light in terms of side effects; it's the Taxol that will give me the most unpleasantries. On Monday night, only a half a day after my first infusion, I began to feel some nausea, but they sent me home with medication for that, which worked quickly and effectively. Taxol can screw with your whole digestive tract, which extends from where it all goes in to where it all goes out. So I did have some lower digestive discomfort on Tuesday, and today I started getting what I can only describe as a stinging mouth. (No, I'm not talking about my swearing, although there is that.) Rather, my mouth feels as if I've eaten spicy foods when I haven't, and I have a bit of a metallic taste in my mouth. I'd been told to expect this, but only now understand what people meant. I'm trying a water, baking soda, salt solution for rinsing, so we'll see if that helps. I've also been told that eating with plasticware, rather than silverware, can help mitigate that, although I'm not sure how and why.

I met with a dietician yesterday, and she gave me a whole bunch of advice, including a recipe for homemade Lära Bars and a cookbook for cancer patients titled Eating Well Through Cancer: Easy Recipes and Recommendations During and After Treatment. This book is awesome! Rather than being organized by type of food or dish (e.g., sauces and salsas, or main dishes, or poultry), it's organized by side effects. It has a whole chapter with recipes to cook if you're nauseated, and another if you need to enhance your protein intake. And (I'm so not making this up), there are actually chapters titled "Diarrhea" and "Constipation." I kid you not!  Happily for me, the book also has a chapter titled "Sore Mouth or Throat," which includes recipes for Cream of Spinach and Brie Soup, Cantaloupe and Banana Smoothies, German Chocolate Angel Pie, and my favorite, Weight Gain Pancakes. Ha! I hope I don't actually need Weight Gain Pancakes, but you gotta love this! I'm thinking of trying the Apple Sauce Oatmeal tomorrow morning.

In terms of side effects, I will most definitely lose my hair within the next two to four weeks. This may come as a shocker to some of you, but I'm a bit of a control freak, and cancer is not easy on control freaks, as there is so much we don't get to, you know...control. But I will control this: I am going to get a cute short haircut tomorrow. I should be able to enjoy that for a while, and then when my hair starts coming out in chunks, I will get it shaved off completely. I will not sit idly by while cancer does this to me. I'll also ask Alex, my hairdresser (who is also a make-up artist), to show me how to pencil on eyebrows (because the last time I did that was never). While I'm not looking forward to baldness, particularly during an Illinois winter, in some weirdo way I can't totally explain, I'm looking forward to the experience with a sense of anticipation and curiosity. And who knows--maybe there are perks. Perhaps it will rid me of those pesky chin hairs I keep plucking out!

Introducing Taxol, Pertuzemab, and Herceptin

Good morning, friends and family. And it is a good morning because yesterday I began chemotherapy. To be honest, getting chemotherapy is quite boring. You basically just sit there for hours hooked up to an IV. I should be able to get lots of reading or writing done while I'm there.

Taxol, illustrated by Nate Lundstrom

I've included a few images here for your viewing pleasure. The first one (on the left) is Taxol, illustrated by my son Nate. It's a chemotherapy that I will get in weekly infusions over the next 12 weeks. Taxol is a very standard chemotherapy for breast cancers that are ER/PR positive. I'm not 100% sure about how it functions, but Nate's illustration gives you a sense of how I imagine it functioning: In a whoop-ass sort of way, hunting down and targeting those ER/PR receptors on the cancer.

I am on two additional drugs, which I get infused every three weeks for the next 12 weeks. These are not technically chemotherapies, but rather, biological agents. One of these drugs is called Pertuzemab, and here is an illustration Nate made that to me just shouts out, "Hello, my name is Pertuzemab, and I'm here to eviscerate your cancer!"

Pertuzemab, illustraed by Nate Lundstrom

I do not yet have a clear image of Herceptin (Nate is working on a visual rendition of it, but it's not yet complete). However, it is a widely used biological agent that, like Pertuzemab, is targeted toward HER 2 Positive cancer. I will be getting Herceptin for a whole year, every three weeks. (To clarify, Nate drew the green one to be a general "cancer killer," but I named it Taxol. He did the second one at school, before my diagnosis, but I named it Pertuzemab.)

I have to say that while I have already had a wee bit of stomach upset last night caused by the Taxol, I love the idea of these nasty drugs coursing through my veins offing little cancer cells here and there assassination style. And the doctors have given me some anti-nausea medication should I need it. I woke up feeling engergized, and I also exercised, which is something I hope to continue during chemotherapy.

Both Craig and Mom came with me to my first chemo yesterday, so here are a couple of photos. (You'll note Grace is peeking out of my shirt pocket.)  It seems weird to snap happy looking photos of chemotherapy, but again, I am feeling good about getting my treatment underway, and having both Craig and my mom there were really important. There were so many unknowns for me going into it, and having them there with me just made that infinitely easier emotionally. Also, mom brought me an awesome lox and cream cheese bagel sandwich and a smoothie from Einsteins! They say I'll begin losing my hair in a couple of weeks, so my next plan is to go get a short haircut to ease the transition to baldness, and to start acquiring a repertoire of hats. For now, it's time to begin grading a bunch of papers, comforted by the fact that Taxol, Pertuzemab, and Herceptin are beginning their important work!

Holding on tight

I had a great time in Dallas at the Literacy Research Association meeting. I am always inspired to come to this conference and have conversations with so many thoughtful and smart people about literacy research and instruction. Seeing all my LRA friends and colleagues was so helpful for me mentally. I am so grateful to my stepmom, Patricia, for coming to Dallas to stay with me, as I wouldn't have wanted to do this alone. Patricia, you are simply awesome. Here's a photo Patricia took as she and I had a drink with Grace at the Omni Hotel.

Delayed a day getting home, and at DFW airport right now hoping my flights to Chicago and Champaign go smoothly. I'm sad that the conference has come to an end, but looking forward to seeing mom, Craig, Nate, and Evan. Also, my new beginning or new "normal" starts tomorrow with chemotheraphy, and in a weird way I'm looking forward to getting that underway.

Holding on tight...

A Thank You to My Students

Had to share this selfie of me in my new "Cancer Sucks" t-shirt and "Fight like a Girl" pin, both given to me by my students today on our last day of the semester, along with several cards with their kind and heartfelt words. Thanks, 208 peeps! You inspire me! I can already visualize the lucky children who will have the great fortune of having you as their teachers in a couple of short years. Teach on!

Waking up with cancer

The last couple of days have been difficult. I have felt weary, sad, and fearful, and I think it showed to those around me. I know my mom noticed, as did Craig. Part of this weariness has stemmed from the fact that every morning when I wake up, the first thought that enters my conscious mind has been, "Oh shit. I have cancer." And the pit in my stomach would promptly return. What has been even worse is waking up in the wee hours of the morning only to find the now familiar night demons egging my fears on, pushing my mind to wander to the worst. Worry and fear. Stomach pits. Tears.

Last night I was feeling this way: Physically and emotionally drained, and, quite simply, afraid. Mom reminded me that while it won't be easy, I will come out of this. She is right. And I believe her. But it also dawned on me that while the doctors, my family, and my friends are all optimistic, and vocally so, it had been a few days since I'd heard the words, "You're going to be okay" spoken to me by a doctor in that medically authoritative way that I need. (I am a doctor's daughter, after all!) My dad has provided me with these kinds of words in that kind of voice. But his are not just reassurances spoken with medical authority. They are comforting. They are Dr. Dad-medical-authority-I-love-you-and-you-will-be-fine-reassurances. They are powerful. I realized last night how much I need them, spoken in that "not only am I a doctor, but I love you" tone. Around the time I was thinking this last night, he texted me. Then he called me on FaceTime, and he gave me those words. I needed them so badly at that moment, and I think I will need them frequently in the days, weeks, and months to come, not just from Dad, but from others who know and love me and happen to know something about medical science and the human body.

I went to bed shortly after our conversation, and this morning, for the very first time since my diagnosis, my first thought when I woke up was not, "Oh shit. I have cancer." Instead, it was, "Today I'm going to beat the shit out of cancer." I couldn't believe it. Just realizing in the moment that my first thought was a different first thought was enough to make me smile as I tossed the covers aside and swung my legs off the bed. Keep in mind that cancer was still present in my first thought of the day. And that sucks. But the difference is that unlike every other morning for the past two and a half weeks, this morning it did not frame me. Instead, I framed it, and I did it in a bitch-slapping sort of way. Thanks, Dad.