Tadasana: Mountain Pose

I like contact sports. I find it quite satisfying to get shoulder-to-shoulder with people as we duke it out for ball possession. I don’t mind getting knocked down occasionally, and I thrive on the cardiovascular exertion. That said, I’ve started taking yoga classes to help alleviate some of the muscle and connective tissue problems I’ve been experiencing due to surgery and radiation. News flash: yoga is definitely not a contact sport. I keep hoping to find a form of yoga that’s a bit more, well… active. I’ve attended a “yoga flow” class, which does cause a bit of perspiration, and “rocket flow” and “disco hot flow” are, apparently, things in the world of yoga. But so far I haven’t found a form of yoga that is sufficiently rigorous to give me my contact sport fix. I keep fantasizing about “body slam punk yoga” or something—a form of yoga that would rival roller derby, where I could take on a tough and dangerous yoga identity like “Bitchslap Swagatron” or “Badassana Mama.” I can hear the live broadcast of a match now: “Look out, folks! Here comes Lady Namastectomy, moving seemlessy out of warrior pose as she shoulders Her2Neu off her mat!”

In reality, I kind of suck at yoga. But I’m getting better in both mind and body. Each time I practice I become a bit more flexible and more capable of centering myself on command. At first I could only achieve a simultaneous centering of body and mind during shivasana, the final pose at the end of yoga practice, in which full relaxation ensues. (Shivasana actually means “corpse pose,” evoking a metaphor that I don’t want to explore right now.) But lately I’ve come to find that centeredness in tadasana, or mountain pose. The root of the word comes from the Sanskrit tāḍa, which means mountain, and āsana, which means posture. It is a foundational pose that is meant to align the body and center the mind in order to prepare for the next pose. (For a photo and more info: http://en.wikipedia.org/wiki/Tadasana.) For me, tadasana is at the same time strong and calm. It is standing still, but with muscles activated, at the ready. It is in that momentary space of active calm that I become prepared to take on whatever comes next.

This is very appropriate today. I received my final Herceptin infusion in the Carle chemo suite, and this Friday I will have my chemo port surgically removed. When I first had my port inserted in December 2013 and soon after began chemotherapy, I viewed my treatments as a necessary and even oddly welcome process--a brutal series of bitchslaps meant to subdue the cancer and send it packing. But these treatments have also felt like a series of invasions, from the surgical implanting of the port itself, to all the needle pricks for blood draws and infusions, to major surgery, and even the radiation, which, although painless, penetrates you. Even the cancer itself felt a like an invasion, despite that fact that it consisted of my very own cells gone awry—the ultimate treason and betrayal. These invasions have been both physical and mental, breeding moments when I felt as if I was losing both body and mind. Decentered and unglued. And yet…

There is also something about a nasty process like cancer diagnosis and treatment that is centering. I’ve often heard people say, “cancer changed me,” and even, “cancer was the best thing that ever happened to me.” That last one seems like a stretch, doesn’t it?  But I know where those sentiments come from. They come from a sense that things are now different, or perhaps from an altered vantage point from which everyday things seem to take on subtly different qualities, becoming just a bit more beautiful or inspiring. Nevertheless, the notion of perspectival change—viewing the world through new eyes—doesn’t quite do it for me, and I think that’s because it’s calm without action. Don’t get me wrong—the ability to see things in a new light is not easy, and it is not to be dismissed. Indeed, I have experienced a shift in perspective, and it’s awesome. But you know me: I also want active. Tadasana.

The way I understand it, tadasana doesn't give people a generic strength (or calm, or grace, or whatever). Rather, it prompts me to summon my own strength, in its own form. It doesn’t center me. I use it to become centered. In other words, it is both calm and active. Tadasana is an agentic stance. 

In some ways, tadasana (whether it’s an actual yoga pose, or a broader metaphor for how I now feel) triggers my internal GPS, sending my thoughts simultaneously inward and outward to engage the multiple points of love, care, and goodness that ground me, that let me know who and where I am: Craig, with his warm touch, smiling eyes, always-good heart, and endless love—my ultimate passion. Mom and Dad—always there, on the sidelines and in the stands, in my genes, and in my heart—true bridges over troubled water. Patricia and Vernon: magical combinations of parent/friend, and also there for Mom and Dad because they need those bridges, too; I am a better daughter because of them. Evan and Nate, my thoughtful, creative, bright, and healthy boys who rock my world; who have already made the world a better place, and who will surely continue to do so. The rest of my family and all my friends: You lift me up, pure and simple.  

This will be my last post on this blog. I’ll keep the blog live for any folks who wish to revisit it, but I’m done with this pose and ready for my next challenge. Tadasana. Bring it!

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Postscript:

I couldn’t work this excerpt from my favorite author, Barbara Kingsolver, into my post, so here it is for you in it’s own glory:

            Last May, I saw a dragonfly as long as my hand—longer than average-sized songbird. She circled and circled, flexing her body, trying to decide if my little lake was worthy of her precious eggs. She was almost absurdly colorful, sporting a bright green thorax and blue abdomen. Eventually she lit on the tip of the horsetail plant that sends long slender spikes up out of the water. She was joined on the tips of five adjacent stalks by five other dragonflies, all different: an orange-bodied one with orange wings, a yellow one, a blue-green one, one with a red head and purple tail, and a miniature one in zippy metallic blue. A dragonfly bouquet. Be still, and the world is bound to turn herself inside out to entertain you. Everywhere you look, joyful noise is clanging to drown out quiet desperation. The choice is draw the blinds and shut it all out, or believe.
            What to believe in, exactly, may never turn out to be half as important as the daring act of belief. A willingness to participate in sunlight, and the color red. An agreement to enter into a conspiracy with life, on behalf of both frog and snake, the predator and the prey, in order to come away changed.

-Barbara Kingsolver, High Tide in Tucson, p. 268

Penultimate Infusion

Okay, I don't even know how long it's been since I posted on this blog. I think the increasing periods of time that pass between my posts is an indication that I may close the blog down in the near future. But I'm not ready to do that yet. I've been holding off until my treatments are completely finished, and today is my penultimate Herceptin infusion. Three weeks from today will my last, and then on March 13th I'll have my chemo port removed.

I started Herceptin (Trastuzemab) on December 9, 2013. The standard course of treatment is to get Herceptin for one year, but I was not able to get Herceptin during the three weeks prior to, or post surgery last march, or during the eight weeks I was getting Adriamycin and Cyclophosphomide last spring. So, we had to add those 2-1/2 months back into the timeline.

One thing (among many) that I have come to understand through my long strange trip through Cancerland has been the significance of multiple milestones, both big and small. Well, these two coming up on March 11th and then with port removal on the 13th are big ones! But they won't be the last. I am taking an aromatase inhibitor for five years, and will have occasional check-ups with my oncologist during that time as well. I am currently considered to be in remission, and they don't call the cancer cured unless it stays away for five years. So, that will certainly be another very important milestone for me.

In the mean time, I am simply loving life. In fact, I don't know that I've ever been this happy. I'm busy at work, finished my book, enjoy seeing the kids growing and loving their lives, have started learning yoga, and am playing soccer. And those are just some of the obvious things. It doesn't include the littler and more mundane stuff--stuff that seems breathtaking when you stop to notice it. Sunlight on geese taking off from the pond, a hug from Craig, Ben and Jerry's, an awesome new chicken casserole recipe, a clear crescent moon in a hyper cold night sky, baby kale, Dolores' big brown eyes and her mini tail-tip wag, sparkly snow crystals, Glassy Babies, a stranger's smile, that cool moment when you wake up and don't know exactly which day it is, a new pair of boots, the first sip of coffee in the morning, a Facebook invite from an old friend, a really juicy clementine, the anticipation of a road trip, ....  Fill in your own blanks here, and appreciate all of them.

No Token Thanks Here

As some of you who I interact with regularly or who see my Facebook posts may know, my MammoDiagnosaCancerversary recently passed. That was November 13th. While I didn't let that date go by unnoticed, neither did I mark the date here on my blog. I thought about it, but to be honest, I just didn't have the time. This fall I have been crazy busy with things completely unrelated to cancer. And for this, I am very grateful.

In the U.S., we often let our expressions of gratitude collect through the year like little treasures quietly stowed away until November rolls around. Then, on Thanksgiving, we unleash them explicitly and joyfully in a shower of gratitude for things big and small: Health, happiness, puppies, seat warmers in the car, financial stability, our partners and spouses, spectator sports, chocolate, neoprene, coffee, hair, grandchildren, opposable thumbs, trade winds and piña coladas, the smell of pine trees, flannel sheets, my children's caring and thoughtful teachers, british accents, Craig's safe return from China, modern medicine... The list goes on, and I'm sure yours does, too. Thanksgiving is truly about more than food: It is a wonderful explosion of good feelings, warmth, and hope. But if it's so warm and fuzzy, why do we wait for a special day to give thanks? Maybe it's because we need the regular reminder. After all, our daily lives are often fraught with shitty things big and small, that take on more urgency than the things we love and are grateful for.

Sometimes, during our Februaries, Junes, and Augusts, we do remember the things that make us feel grateful or fortunate. But what would it take to make every single day a day of giving thanks; a day of gratitude? I'd like to think it doesn't take a cancer diagnosis. But I do know that not one day has gone by since last November that I have not been immensely thankful for someone or something. Some days I almost tear up with thankfulness and relief for simply being here, for Craig's kindness and love, and my ability to play soccer with a bunch of other middle aged men and women. Other days, it's more mundane stuff: gel nail polish, for example, or large sized non-stick bandaids for the cuts on my knees from soccer. Cancer sucks, but in a very bizarre way, I'm grateful for how my cancer diagnosis made me more aware of all of the little beautiful things. They're there. All the time. Right in front of us.

So, in the spirit of Thanksgiving, I'm going to share here a post I made here on my blog last May titled, simply, "Grateful." Happy thanks-giving, everyone.

* * * * * * * * * * * * * * * * * * * * * *

Cleaning the garage

Taking care of the soccer carpooling

Feeding the pets

Emails and text messages from friends (even if I don’t respond, I read them all)

Load after load of laundry

Fixing the towel rack

Cleaning up dog barf

Dinner

Pulling weeds

“You have a nicely shaped head”

Fixing the kitchen chair

Doing the grocery shopping

Hats

Getting the tire on my car fixed

Running a meeting for me

Mowing the lawn

Chocolate

Going out for coffee with me

Walking the dog

Driving the kids when they have to get to school early

Offers to shave and polish my head

Filling the bird feeders

A new pair of sweats for my horizontal days

Helping me plant the garden

Little notes in my box at work

Making sushi with the kids

Thoughtful cards in the mail

Cleaning out a birdhouse

Hand sanitizer everywhere

FMLA

Doing the dishes

Getting gas for the mower or my car

More dinner

An origami bird in my box at work

Presenting a paper for me

Squeezing me in last minute at the doctor’s office

Co-teaching with me

Fixing the doorknob

A vacation for the kids

Nurses who know my name without having to look it up

More laundry loads

Taking me out to watch a soccer game

More dinner

Listening to me talk about cancer and chemo

Remembering that sometimes I like to talk about things other than cancer and chemo

A snuggly child

Cleaning the coffee maker

Helping a kid with their homework

A Facebook message

Letting the dog out first thing in the morning

Flowers

A new book

Scooping dog doo from the yard

Helping me understand my treatment

Driving me to physical therapy, doctors’ appointments, and chemo

Ordering and picking up take-out

Jump starting the battery

Going to the kids' games and cheering them on

Fixing a loose part on a table

More dinner

Phone calls

Getting a kid a meal on the run

Picking up a prescription

Hugs
Health insurance

I could go on and on, but you get the picture. So many people giving me (and us) so much. Thank you, all.

My Love-Hate Relationship with Pink Ribbons

Ever since I was diagnosed with breast cancer last November I’ve been pondering this blog post. Upon diagnosis, I immediately developed a heightened awareness of pink ribbons. They're everywhere. It’s like I was flung full force into a scary 3D version of the game Candyland, only it’s called Cancerland and there are both beautiful and terrifying encounters to be had: Welcome to Cancerland—here’s your pink ribbon! Pertuzemab is your friend, but beware of the Taxol Forest, and steer clear of the Metastases Swamp! Oh, and don’t forget to use your FMLA “get out of work free” card!

I’ve never liked pink much in part because I’ve always been a bit perturbed by its prissy associations. I have never been a girly-girl, and I have always resisted gender stereotypes. So why do I have my current Facebook profile picture set to the following?

Perhaps it is an indication of my love-hate relationship with pink ribbons. Let me explain.

First off, let me just say that I am a direct beneficiary of pink ribbon campaigns. In the last few years, treatments for breast cancer have advanced in leaps and bounds (Jump ahead four spaces and enjoy a bright red chemo cocktail!). These advances are due in large part to the funds raised for breast cancer research, and I am grateful. I believe that if it were not for pink ribbons and breast cancer awareness, I would have likely become mired in the dreaded swamp never to emerge from Cancerland. So, part of my love of pink ribbons is directly tied to money. And those pink ribbons signify more than money and research to me. They have become little beacons—a flash of a pin on a stranger, a pink bumper sticker on a car, or a friend’s Facebook post showing support for breast cancer survivors—that help me locate myself within a new and bizarre terrain.

But while I find a sense of identity and comfort in those pink ribbons, I also have significant concerns regarding the uptake of breast cancer awareness relative to other cancers and diseases. To cut to the chase, I think the public’s embrace of breast cancer awareness is tied to the fact that women have boobs, and most men really like boobs. Boobs are also tied to notions of motherhood and nurturing. Why WOULDN’T we all want to save the ta-tas? Isn’t saving ta-tas the same as saving Mom and Apple Pie? Maybe. At least, I think that’s the intention. But this makes me a bit uncomfortable, because really, when it comes to having cancer, I don’t give a flying rat’s ass about my boobs. I’m more concerned with saving my life, with or without the boobs. I think the save the ta-tas idea is subtly tied to boobs and women’s bodies in general as sites of exploitation. Of course, I don’t think people with a “save the ta-tas” bumper sticker or a pink ribbon are directly exploiting women. However, I think there is a connection between the historical and pervasive tendency to exploit women’s bodies and the breast cancer awareness frenzy. Think about it: When was the last time you saw a cammo ribbon for testicular cancer, or someone wearing a t-shirt that said “save the gonads”? And to my knowledge, every single person in the world has a colon, but you don’t see people walking around with dark brown colored ribbons, running 5Ks with dark brown tutus, or shouting “save the guts!”

So what does it mean that the discursive and symbolic means of generating funds to save women’s lives are part and parcel of a set of discourses and ways of thinking about women’s bodies that are tied to exploitation? Perhaps it’s a form of interest convergence. Derrick Bell (1995) argued that school desegregation and the Brown v. Board of Education decision happened because at that moment in U.S. history, the decision benefitted both white people and black people. (It boosted our credibility abroad amid criticisms that the U.S.'s campaigns for democracy abroad were hypocritical given domestic civil rights abuses.) The notion of interest convergence posits that public policy decisions benefiting black people or other historically marginalized groups will not occur unless those decisions also benefit whites, or those in power. Is it possible that pink ribbon campaigns are taken up so widely and are successful because the interests of women converge with those of men in some way?

I don’t have an answer to that question. As I weave my way through Cancerland (a space that I may always occupy despite the fact that I am now cancer-free), successfully avoiding many of its more frightening elements, I will continue to mull this over. But it is worth noting that as I write this, I’m sitting in the chemo suite at Mills Breast Cancer Institute in Urbana, semi-boobless, getting an infusion of Herceptin (trastuzemab) (once again, thank you to the Gods of Science!), and wearing a pink pin with a ribbon icon on it that says “Fight like a girl!”

 

The buzz and flurry of Normal

It has been over a month since I have posted to this blog, and this passing of time should be read as a blessing. In more ways that one, my life is returning to normal. Travel with the family, gardening, running a 5K, the presence of hair. You know, the simple things. I am also resuming full time work, teaching a regular load of classes at Illinois State University in, you guessed it, Normal, Illinois.

Tomorrow I will meet my students and begin teaching my classes, two of which are an introduction to literacy and literacy instruction in elementary classrooms. I will be asking my students (future elementary, special education, and bilingual teachers) to introduce themselves, but I'll be asking them to do so through poetry. It is crucially important for Language Arts teachers to write, even if they find it uncomfortable or don't yet view themselves as writers. This is because teaching, like writing, is inseparable from who we are. They are both human endeavors.

In their book Authors in the Classroom, Alma Flor Ada and Isabel Campoy suggest a writing unit on Affirming the Self, in which Eoise Greenfield's poem "By Myself" is used to prompt and inspire students' own "I Am" poems. So in the spirit of embracing the human endeavor of writing, of poetry, and of good teaching, I have written an "I Am" poem, which I will be sharing with my students tomorrow before asking them to write their own. Here it is:

The Buzz and Flurry of Normal

When I am by myself
And I close my eyes
I am cancer free,
Without demons,
And without trepidation;
Serene.

You see,
Last winter I was a deer,
Surprised and paralyzed
In the headlights of fear.
My mind raced and my body stood still;
Infiltrated and mutilated,
Intoxicated and radiated.

But I sent those demons packing.
Exhilarated, elated,
Now I am rejuvenated;
Grateful to the gods of science
And the buzz and flurry of normal

When I am by myself
And I close my eyes
I am happy
Just to be here.

    -Inspired by Eloise Greenfield’s By Myself

An A+ in radiation

Time is flying by, perhaps because radiation is a piece of cake compared to chemo. At this point I only have eight more treatments left! Many people have asked me what it's like, so I found a YouTube video that gives an idea of what the room and the machine look like, as well as a basic explanation of how the machine works. I'm having trouble embedding it, so I'm just sharing the link here: https://www.youtube.com/watch?v=Nuqmt7aF2FA. The room, machine, and the table the patient lies on in the video are just like in the facility where I go (Mills Breast Cancer Institute in Urbana, IL).

As I said, radiation is very easy. The most difficult part is lying still and not scratching the inevitable itch on my chin or eye for the 30 minutes or so that it takes to get the treatment. I've also had minimal side effects so far; just some mild redness, like a sunburn, on the radiated area (which includes the upper chest where my right breast was, the armpit, behind the arm on my shoulder blade, and the lymph node area just above the right collar bone). But at my weekly visit with the radiologic onocologist yesterday, he said that my skin looks great--perhaps the best he's seen at this stage in treatment. Naturally, I gave a vigorous fistpump and exlaimed, "Yessss!!!" I asked, "Does that mean I get an A?" An he said, "No, an A+!"

Meanwhile, back at the ranch, my hair is VERY slowly beginning to rejuvenate. It's still hyper short, but it's downy soft, and so far it appears to be growing in dark rather than gray. To most people I probably still look bald, but as I went for a bike ride yesterday evening I could feel the wind blowing through it.  Simple pleasures. :-)
 

A prayer to the hair goddess

Dear Hair Goddess,

First of all, let me just say 'thank you' for nose hair. Yes, nose hair. Who could have imagined its virtues prior to chemotherapy?! For seven months I dealt with a nose that ran constantly, which I attribute at least in part to the loss of precious hair helping to hold back the flood. That constant drip has now subsided due to your generosity, and my nasal passage and I are thrilled.

And let me also say 'thank you' for the simple pleasure of not having lost 100% of my head hair during chemo. I'm not sure why that made me happy; after all, except for a few short whisps, my head was pretty much an oversized cue ball. But I suppose I feel an odd sense of pride that some of my hair was resistant to the toxic cocktail my body was subjected to. So for that, I am grateful.

I am also pleased to see that some of my hair is beginning to grow back. But if I may ask, why the rush to replenish my leg hair? I haven't exactly missed shaving my legs. And I am curious as to the significance of my once-again-plentiful chin stubble. Is my face really considered a priority zone for new hair growth? Again, I appreciate what you've done for me. But if you hadn't noticed, I'm pretty much bald on top, and getting a bit of my head rug back would be nice. It need not be a lot, and I'm not too concerned about the color or texture. Gray and curly would suit me just fine at this point. Hell, make it purple for all I care. But this cue ball thing is getting a bit old.

In case it helps my cause, Craig has made a special sacrifice to appease your bouffant highness by shaving his formerly thick mane to resemble my stubbly chemo head (see photo below). I hope you will accept his locks as a token of our devotion and appreciation.

Your faithful but still largely hairless follower,
Lara

Relay for Life with a One-Eyed Dammit Doll

As many of you know, I participated in the American Cancer Society's Relay for Life yesterday evening in Champaign. Actually, I didn't walk all night with a team, but I did walk the survivors' lap. Craig and Nate both joined in, walking the caregivers' lap with me after the survivors' lap (Evan was away at a soccer tournament). What an awesome event! It is definitely inspiring to see so many people working so hard to raise money for cancer research and support. I didn't even sign up for the event until last Wednesday. But within only two hours of signing up, friends and family had already donated over $300, and in end, I raised $1,200 (well over my initial goal of $200)! Thank you to all of you who donated or helped spread the word. And for those of you who would like to donate, but either didn't know about this or haven't yet had the chance, you can do so here: http://www.cancer.org/.

To be honest, Nate was not very excited about being there. He was happy to do it, and understood the significance for me, but there wasn't a whole lot for an 11 year old kid to do there prior to the kick-off of the event at 6:00. Besides, he was missing the England-Italy world cup game! There were a few food vendors, and we could stroll around the tent sites of the different teams. Each team was selling something (typically food) to raise money for the ACS, and we found some cookies and brats to call dinner.

At one point, Nate said, "I wish they sold something other than food. They should be selling little dolls that represent cancer that you can stick needles into or something." I thought it wasn't a bad idea, and sure enough, after walking around a bit more, we came upon a team that was selling "Dammit Dolls." A Dammit Doll is designed to be whacked around while shouting "dammit!" when feeling frustrated or angry. Each one comes with a poem explaining its purpose (see photo lower right). Of course we had to buy one. I picked one with a pink ribbon, and then promptly stuffed in my purse as the survivors' lap was about to begin. And when we pulled it out a bit later, we noted that it was missing an eye. This gave it a sort of rough and tumble look, arguably more appropriate for its intended use (see photo at left)




A particular highlight of the event for me was meeting a woman with a diagnosis virtually identical to mine, but who is a few weeks ahead of me in treatment. I actually recognized her from the chemo suite, and it turns out that our treatments have been identical. I swear, I just gravitated toward her, as I realized that it was the first time I've actually talked with someone going through exactly what I've gone through at the same time. It was incredibly therapeutic to talk with her and to share stories. And what's more, her head hair is beginning to grow back! The only hair I've had growing back so far is my leg hair and my nose hair. I'll take it I guess, but it's not exactly the regrowth I was hoping for at this point.

Anyway, I've posted a couple more photos from Relay for Life below. And here is a link to the Champaign-Urbana's newspaper's online photo gallery from the event, which includes one of me and Nate ringing the Survivor Bell together:
http://www.news-gazette.com/multimedia/photogallery/2014-06-14/relay-life-2014.

Radiation as stealth bitch slaps

So, with the onset of summer I'm moving forward with treatment. I had my first (of 30) radiation treatments today. I have sort of been looking forward to radiation, knowing that it will be so much easier on my system than chemotherapy. What I wasn't expecting is how uneventful radiation is.

I'm not exactly sure what I was I thought it would be like, but at a minimum I guess I was thinking a little light might come out of the radiation gizmo hovering over me, or perhaps there'd be some buzzing sound coming from it, like when you get an X-ray. And at most, I was imagining it might be a bit like lying in a tanning booth (although I've never done that), or in some Star-Trekky table thing with blue neon lights surrounding me. But no, it's pretty much just lying really still in a plain old medical room with a machine over me that apparently sends radiation into my body in a way that evades my sensory perception. The only sounds I heard other than the conversation of the technicians was the Norah Jones music playing on the sound system. While I love Norah Jones, I'm almost disappointed! I mean, this is the beginning of the last major portion of my treatment, so something more explicitly bitch-slappy would seem to be in order, like the Violent Femmes.

But really, I can't complain. Radiation is easy-peasy. The most "severe" side effects would be a bit of fatigue and some sunburn-like skin changes on the radiated area, but if those happen at all it wouldn't be until I'm a few weeks into the process. So I'm running with it, and reconceptualizing this process as stealth bitch slaps. Any remaining cancer cells won't know what hit them. In fact, they all just kiss off into the air!

Major Medical

What would you do if you didn't (or don't!) have health insurance and all of a sudden you became "sick" or injured, your ailments falling into that category of "major medical?" And note that it does happen all of a sudden. In fact, all at once, you can become "sick" even when you feel "normal" and "healthy." That's how it happened for me last November when I was diagnosed. It's bat-shit scary, and that's before taking into account the potential financial hit.

I've taken a while to write about this only because I've had other things to say and simply haven't had the energy to get to it until now. But earlier this winter or spring, Craig was looking at statements and bills, and noted the cost of just one of my chemotherapy infusions from chemo course #1 (prior to surgery). This was when I received Taxol on a weekly basis and a cocktail of Taxol, Herceptin, and Perjeta every three weeks. The cost for one of these cocktails? About $50,000. We've all heard about the exorbitant costs of healthcare in the U.S., but seriously--$50,000 for one episode of chemo?

So what's going on here? That's actually a serious question, because I really don't know. I imagine it's partially the super-high price tag slapped onto new and innovative drugs like Perjeta (which, along with Herceptin, is made by Genentech), which has only been on the market for a year or two. But an article in Pharmacy Times lists the cost at just under $5,000 per dose (http://www.pharmacytimes.com/publications/health-system-edition/2012/August2012/Pertuzumab--Perjeta). And according to a Wikipedia article, Herceptin can cost about $70,000 for a full course of treatment (http://en.wikipedia.org/wiki/Trastuzumab). Even if we included Taxol, these numbers don't add up to $50,000 for one infusion of Taxol, Herceptin, and Perjeta. Sure, I would also get Benadryl, Zofran, and saline, but still...

According to an article in today's New York Times, the primary source of healthcare costs is not healthcare workers or physician's bills. Rather, it's executive salaries in the medical business world: http://www.nytimes.com/2014/05/18/sunday-review/doctors-salaries-are-not-the-big-cost.html?smid=fb-nytimes&WT.z_sma=OP_MTE_20140519&bicmp=AD&bicmlukp=WT.mc_id&bicmst=1388552400000&bicmet=1420088400000&_r=2. This includes CEOs of health insurance firms and hospital administrators, who make much more money than general physicians and nurses do. I'm thinking oncologists may make more than general physicians, but still--this article does an excellent job of pointing out where our "major medical" expenses are coming from, at least in part.

I would really love to know what those of you who work in the healthcare and biomedical industries know and think about all of this. Although I have no answers, I do know this: I am extremely fortunate not only to live in a place with quality healthcare, but also to be fully insured. I honestly cannot imagine what this whole experience would be like if I did not have that kind of security. And thus, I find it very very difficult to imagine why so many people would want to keep so many people from securing the same peace of mind. Obamacare ain't perfect, but neither are our bodies.

The Average Wholesale Price of pertuzumab (Perjeta) is $4890 per 420-mg vial. - See more at: http://www.pharmacytimes.com/publications/health-system-edition/2012/August2012/Pertuzumab--Perjeta#sthash.8451ACmy.dpuf

The Average Wholesale Price of pertuzumab (Perjeta) is $4890 per 420-mg vial. - See more at: http://www.pharmacytimes.com/publications/health-system-edition/2012/August2012/Pertuzumab--Perjeta#sthash.8451ACmy.dpuf

It's alright

Last night I had a dream that my mom and I were shopping for hats and earrings, lost track of time, and missed today's doctor's appointment and my last chemo. The feeling is a bit like those dreams that I (and many people) have of missing the school bus or a final exam. Hmmm... What does it all mean? Well, I'm not 100% sure what it all means, but here are a few thoughts. First of all, I must make public that my dreams have shifted from really scary things to milder turmoils; from "oh shit, I have cancer" to more mundane little fears like missing appointments and school buses.

And significantly, today is my last scheduled chemotherapy infusion. As usual, I'm not looking forward to it (sort of like I wouldn't look forward to a final exam), but I am at the same time thrilled to be able to put this behind me. While my other infusions have been accompanied by the knowledge that I would feel like hell for a week, then good for a week, and then like hell for another week, this time I get to look forward to constant improvement in how I feel; a gradual but continued emergence from the nausea, fogginess, and sluggishness. This is in addition to other side effects that have been taking hold as the chemicals build up in my system: Fingernails breaking like nobody's business, a greenish tinge to my complexion, dark circles under my eyes, continued hair loss, mild neuropathy in my fingertips, and exhaustion even beyond my post infusion week. (As I've said before, I think the EPA would shut me down if they knew what was flowing through my veins.) But after today I will be over the biggest hump in my treatment, and it should be smooth sailing from here on out, with a steady process of detox, until...

RADIATION! That should start on June 4th, but it's very localized with minimal side effects. I should feel more like a person, my hair will start growing back, etc. But in celebration of finishing up chemotherapy and in anticipation of the last major stage of my treatment, here's a song for you all: The Beatle's Here Comes the Sun. The video is admittedly over-flowing with hyper cute little baby animals, but on the other hand, meaningful milestones and awesome songs will do that to people. And the sun theme seems fitting given my upcoming radiation. :-) One of the things I appreciate about this song is the gradual move from sweet and quiet anticipation of good things over the horizon to an emphatic exclamation point of those good things to come, and the knowledge that while things have been difficult, it's alright. Present tense. Indeed, it's alright.

Grateful

Cleaning the garage

Taking care of the soccer carpooling

Feeding the pets

Emails and text messages from friends (even if I don’t respond, I read them all)

Load after load of laundry

Fixing the towel rack

Cleaning up dog barf

Dinner

Pulling weeds

“You have a nicely shaped head”

Fixing the kitchen chair

Doing the grocery shopping

Hats

Getting the tire on my car fixed

Running a meeting for me

Mowing the lawn

Chocolate

Going out for coffee with me

Walking the dog

Driving the kids when they have to get to school early

Offers to shave and polish my head

Filling the bird feeders

A new pair of sweats for my horizontal days

Helping me plant the garden

Little notes in my box at work

Making sushi with the kids

Thoughtful cards in the mail

Cleaning out a birdhouse

Hand sanitizer everywhere

FMLA

Doing the dishes

Getting gas for the mower or my car

More dinner

An origami bird in my box at work

Presenting a paper for me

Squeezing me in last minute at the doctor’s office

Co-teaching with me

Fixing the doorknob

A vacation for the kids

Nurses who know my name without having to look it up

More laundry loads

Taking me out to watch a soccer game

More dinner

Listening to me talk about cancer and chemo

Remembering that sometimes I like to talk about things other than cancer and chemo

A snuggly child

Cleaning the coffee maker

Helping a kid with their homework

A Facebook message

Letting the dog out first thing in the morning

Flowers

A new book

Scooping dog doo from the yard

Helping me understand my treatment

Driving me to physical therapy, doctors’ appointments, and chemo

Ordering and picking up take-out

Jump starting the battery

Going to the kids' games and cheering them on

Fixing a loose part on a table

More dinner

Phone calls

Getting a kid a meal on the run

Picking up a prescription

Hugs

* * * * * * * * * * * * * * * * * * * * * *

I could go on and on, but you get the picture. So many people giving me (and us) so much. Thank you, all.

Getting ready to bloom

Well, okay, the plum tree is already in bloom, and I still have two more chemo infusions left. But still.... I'm trying to rush things, and why wouldn't I? This spring has been painfully slow in coming, and obviously I'm not just talking about the weather. Who can resist the urge to usher in little blossoms and flowers?

I keep a close watch during spring, searching the tulips, daffodils, and blossoming trees a few times each day for any new micro-moves toward bloom: A bud here, a new shoot there, a bit more color popping out of the Redbud. Might simple and diligent observance nudge them a bit further along in the process? Maybe not; the blooms will come in their own sweet time. But each little step is celebrated, and I'm glad to be witness to them.

**************

Today is a good day. A vertical day. Not only that, for the first time since before surgery, I ran. Actually, I went for a run/walk combo out on the trails out on the prairie--two minutes walking briskly, two minutes slowly jogging--for about a half hour. That's my kind of therapy, my own little micro-moves toward full bloom.

Going with the flow

I'm sitting here in the chemo suite this Wednesday morning, port accessed and awaiting my pre-meds: Zofran, dexamethazone, Ativan, Aloxi, and Emmend. Quite a cocktail, and those aren't even the chemotherapies (Adriamycin and Cytoxan). A few minutes ago, my friend Cathrine emailed me the following image, which I love:

Note that the red beverage matches the red drug Adriamycin. I love this because it illustrates both humor (an absolutely essential component of treatment) and confidence in the power of the drugs. But it also conveys the potential celebratory aspect of chemo. I say "potential" because I doubt that many think of the infusion of highly toxic chemicals into the body, and the accompanying nasty side effects, as cause for celebration. However, I do believe there are things to celebrate in this process. The obvious things, which those who are adept at seeing the silver lining in such experiences may note, include the knowledge that treatment is working, and that every infusion amounts to a fairly significant bitch slap against the disease, as well as the continued joy in all aspects of life outside of Cancerville. But it is also worth celebrating the resiliency of the human body and mind as they undergo chemotherapy.

Two weeks ago, one of the nurses in the chemo suite advised me to "go with the flow" with respect to the exhaustion and the body's need to sleep, and that was excellent advice. This is also the case with the mental fuzziness, or chemo-brain, that accompanies this course of treatment. I have no need to fight these side effects. Although there is a teeny part of me that worries about the work I am not getting done, my body needs the sleep, and sleep is an extraordinary restorative process. It is, counter-intuitively, a beautiful thing to witness from the inside out what my body does to heal itself; to remain as healthy and functional as possible in the face of toxicity. Now I'm not "going with the flow" with the nausea as much. Instead, I am doing what I can to counteract it through both medication and diet. And yet, nausea too is a sign of my body's automatic processes of managing the assault of chemotherapy. It is not fun, and it is not pretty; it is in fact rather shitty. But when we view that as the response of an otherwise healthy body, it can also be viewed as a sign of resiliency and strength.

Emotional resiliency is tougher to achieve, but I am finding that recognizing and embracing the ability of my body to manage the physical side effects helps me shift my frame to one that is more psychologically manageable. Drugs help, too, no doubt about it. So in some ways, going with the flow with respect to the emotional and psychological toll of this means embracing the fact that getting the help of anti-anxiety medicines and occasional sedatives is not a sign of weakness, but rather can indicate strength. (See my post on strength and grace.)

In addition to my body's automatic responses that indicate resiliency, I am celebrating a very good second week post-infusion. I was able to eat regularly, and actually exercised a few times, albeit lightly. What gifts! These are things to celebrate. And now, as I wrap up this post, the Ativan is taking effect, and I am beginning to fade into loopy-land. I will be going with this flow with humor, confidence, and as celebratory a tone as I can muster.

Cheers, Y'All!

Update on chemo effects

Several people have asked how I've been holding up since I started chemo last Wednesday, so here's an update for you all. Nausea was the news of the day on both Wednesday night and all day Thursday. Some you know that I really do not do nausea well, so that was really unpleasant for me. On the flip side, I never actually got physically ill, so the word on the street is that I have been handling this well as far as sour stomachs are concerned. Note that I am on stronger anti-nausea medications this time around, so I shudder to think what this would be like without those. We can all thank the gods of science for Emend and Aloxi (not to mention Zofran)!

What has probably hit me most is tiredness... no, exhaustion. Exhaustion pure and simple. On both Thursday and Friday I took three naps, and one of them actually took me by surprise. The kids had gone to school and Craig had left for work, and I had (apparently) sat down at the end of the sofa to figure out what I might do next. About an hour and a half later I awoke from a fairly substantial slumber, head nestled on the arm rest of the sofa. This exhaustion has been coupled with a foggy-headedness that I've never experienced before; just a complete feeling of "wha? huh?" swirling around me, and even some occasional lightheadedness. While my tiredness has persisted, it has gotten better as the days have gone by, and I'm not taking daily naps anymore. I'm feeling somewhat weak physically, and a little on the pale side, and Dr. Dad is pretty sure I'm anemic from the chemo. The foggy-headedness is still present, but not too severe.

Aside from the nausea during the first two days, perhaps the most annoying side effect has been a bitter and metallic taste in my mouth that won't seem to go away. I'm hoping that also subsides between now and my next treatment (April 16th), but we'll see. Hard candies help temporarily, but it also affects how things taste to me. This makes wanting to eat a bit more of a challenge than normal for me, but my appetite has improved since Wednesday, so I'm not too worried.

So that's pretty much it. This is not a recipe for productiveness at work, but on the other hand, that's not the point of all of this is it? It's been important for me to remember that when I'm drooling in a stupor on the couch or feeling "urpy" (as the chemo nurse put it the other day), those are symptoms not of disease, but of big-ass bitch slaps. While the first course of chemo and the surgery knocked the cancer out for the count, this is now a process of kicking any remaining cells while they're down.

No mercy.

Back in the chemo suite

Well, here we go. As I write this I am beginning my new course of chemo, and from what I understand, it's a doozy. The meds this time include Adriamycin and Cyclophosphamide (a.k.a. Cytoxan), and will be administered four times, everyone two weeks (8 weeks total). The list of side effects is enough to make one nauseated by itself: hair loss, mouth sores, lowered white cell count (with increased risk of infection), diarrhea, nausea and vomiting, decreased apetite, lowered platelet count, skin changes, and my favorite--red urine. This last one is because Adriamycin is a Kool-Aid red colored agent (see photo below), and so that shows up in your urine when you pee. Lovely.

I'm a bit nervous going into this. I'm glad to have it underway, I guess, as the sooner it starts, the sooner it will be over. I'm nervous for the side effects, but also because I'm being treated with antibiotics for cellulitis on my chest--a minor complication from the surgery. The antibiotics could make the digestive side effects of the chemo worse, and if the infection starts to get worse (if the antibiotics aren't really working), then I'm at risk of a more serious infection given the likely effect of lowered white cell count. However, 24 hours after each infusion it is standard to get a shot of Neulasta, which boosts white cell count. So we're hoping that will help prevent any major infections.

I also worry about the nausea itself, as it is likely to be worse than what I experienced in my first 12-week course of chemo. I've been told to just eat whatever sounds good or tastes okay, even if it's only sweet things or salty things for a whole week.

At the very least, this should be interesting! And it's important to remember that this course of chemo will constitute quite a major bitch slap in this whole cancer treatment trip. I'll end with a photo of Grace and Patience N. Hope next to the syringe of Adriamycin.

Starting my new course of chemo with Patience and Grace.

A boob in my pocket

Wow—time sure flies when you’re... um... recovering from surgery. I can’t say that’s been much fun, but it’s nice to have it behind me. Note: Some of this post includes me talking about my breasts, so if that’s TMI or makes some of you uncomfortable, you don’t have to read any further.

A few weeks ago I posted a link to an NPR story about a book that NPR reporter Madhulika Sikka wrote about her experiences with breast cancer: A Breast Cancer Alphabet. It is a wonderful book, which I highly recommend if you’d like some insights into someone else’s experiences with this disease and its treatments. Reading her book made me gasp and cry with connection and understanding—so many of her experiences mirror my own, from the confusion and craziness of diagnosis, to her desire (and my own) to dismantle dominant assumptions of how people might deal with it all. The one place that I find my experience to be quite different from hers is the emotional impact of mastectomy. Don’t get me wrong—this has been an emotional roller coaster. However, the source of my difficulties dealing with the surgery are, I think, different from hers. She discusses the emotional toll of losing a part of her anatomy that is emblematic of womanhood. I get that, particularly for women who, unlike myself, are well-endowed in the chest region.

But for me, the difficulties have stemmed more from the physical imposition of the surgery—having lymph drain bags hanging from my side for 10 days; the limited range of motion in my right arm; having a compression wrap around my arm to prevent lymphedema; and of course, the pain. It just plain hurts, whether it’s arm pain, soreness at the incision site, or even phantom boob pain—a pain that feels as if it’s in a part of my body that is no longer there. This has been emotionally difficult, but less due to the change in my figure (which is not that significant given that I’ve always been fairly flat chested), but more to the limitations in my movement, particularly my ability to exercise. I figure it can only get better from here, though, which brings me to prosthetics!

In another month or so I will get measured and fitted for a new boob—a silicone prosthetic to match my left side. You’d be amazed at how many choices there are in terms of material, shape, size, drape, color, etc. It makes buying a drink at Starbucks seem simple. For the time being, however, I am using a basic generic breast form; a starter boob, really. It's a relatively inexpensive mail order thing made with micro-beads inside a nude-colored triangular piece of fabric. It is very lightweight and similar in size to my left breast, but I must say that it aches having it on my chest, as I am not yet fully recovered from surgery. This is not a problem much of the time—I just go about my day not wearing it, but when I go out I do tend to wear it.  On occasion I’ve found myself discretely trying to rearrange things, and even removing it all together. Sometimes this is easy. Last weekend we went to see the film Divergent, and in the dark theater it was no trouble to just reach in, yank it out, and stuff it in my pocket. But while I’m not a shy person, I stopped short of doing that in the middle of a College committee meeting at work today. Instead, I just dealt with the dull ache. I’m assuming that as time passes it will improve, but in the meantime, if you see me at work or walking down the street with a boob in my pocket, you’ll now know why.

It’s just me, cancer free

Today I had my first follow-up appointment with the surgical oncologist, and my pathology report just came in. The doctor prefaced the results by saying, “This is as good as we could have hoped for.” The pathology showed no cancer in the lymph nodes, none at one of the tumor sites, and “residual poorly differentiated invasive ductal carcinoma” at the other tumor site. It measured .8 x .7 cm, and 6 mm “from the deep margin” (which I believe means margin from the chest wall). The doctor is extremely pleased by this report, and he said that I should feel as if I “just won an Olympic medal.”

Have I mentioned that I like to be thorough? Well, I do. I am supposed to be in a very celebratory mood right now, but I must confess that my joy is somewhat measured. I had hoped to be in the 45% of people whose tumors disappear all together. I mentioned that to the doctor, and he said, “Well, it all but has disappeared.” Okay. But this thoroughness-loving get-the-job-done perfectionist wanted more! I wanted it all the way gone. *Sigh* Of course, as I’m writing this, I am reminded that it is all gone now, thanks to the surgery. I am now essentially cancer free, and if that isn’t something to celebrate, I don’t know what is! Regardless of the fact that there was residual tumor, it and the “demon boob” (as my friend called it) are both gone, and that teeny bit of residual cancer was removed with a nice wide margin around it.

Despite these excellent results, I still get my remaining treatments under the rationale that they will serve as “insurance” against any undetected rogue cells floating around my body. In other words, the course of chemo coming up in April and May is not intended to kill any tumors because I now have no tumors to kill. Rather, it is meant to clean up any remaining microscopic bits that may have survived the first course of chemo and the surgery. Same thing with the radiation that I’ll be getting in the summer.

Beyond the path report, I am healing well from surgery. I am mostly off narcotics now, and the swelling is receding. It’s funny. I am now cancer free, but never have I looked more like a cancer patient: No hair, missing a boob, a big scar across my chest, my right arm wrapped up to prevent lymphedema, lymph drain bags hanging from my body. Oh well. While all of that is clearly a pain in the ass (the drain bags, in particular) it doesn’t bother me too much, as most of it is temporary. And no, I don’t miss my right breast. At first I thought I might. Last Thursday, before surgery, I wished it good riddance, and I meant it. However, I was unsure how I would actually feel after the fact. But, honestly, looking at myself in the mirror and seeing it gone does not feel weird. In fact, it feels oddly normal. Having cancer and knowing that I had tumors right there in my breast felt much weirder and scarier to me. So while I probably don’t look like myself to those around me, I feel like myself. This is not a “new, cancer-free me” talking, or even a partially boobless me. It is just me; cancer free.

Post surgery report

Hey Everyone, Craig here.

Just letting you know the surgery went very well (according to the doctor) and Lara is doing great--a little groggy with Norco and Ambien but overall doing well.  She gets to have her arm and chest wrapped in a compression bandage for a while which can be a bit uncomfortable at times. Hopefully she'll be home tomorrow night if all goes according to plan.

Right breast is apparently in some biohazard bin on the 2nd floor--good riddance.

A goodbye letter to my right breast

Dear Right Breast,

You and I, we’ve been together a long time. What’s it been now? Forty-five years? The memories swirl through my mind: Our first bra, nursing the kids, and a zillion other escapades that need not be detailed here... Good times.

But over the past few years you’ve changed. You became unstable and unreliable, making it difficult to discern your true intentions. A sore lump here, a mysterious “calcification” there (or was it DCIS? I’m still not sure). I stopped counting the number of mammograms and sonograms you drove me to, not to mention the tears and anxiety. And things really took a dive this year, when you went rogue on me. Let’s be honest: We both know you’ve been trying to kill me. But cancer? Seriously? And as if that wasn’t enough, you had to drag the nodes into this. Was that really necessary? I’ve always known you were dense, but this is pure desperation.

So it’s over, Right Breast. You’ve had your fun. While I will continue to enjoy life’s treasures for many years to come, tomorrow you’ll meet your brutal end, filled with medical dissection and testing in a cold sterile lab before being discarded for eternity. And you’ll get nothing from me; no sympathy, and no more tears. All I have left for you are five words: Happy Amputation Day. Ta ta!

Lara