I [Heart] My Life

Would I Want Nia to Do What Angelina Jolie Did?

I never thought I'd be writing about Angelina Jolie on my blog.

Beyond us both being mothers, there are few people I have less in common with than the actress. But after her announcement this week that she had a proactive double mastectomy to avoid the breast cancer that killed her own mother at the age of 56, well, here we are courtesy of cancer, the great unifier.

Jolie wrote about her decision and the radical mastectomy-followed-by-reconstruction procedure in an OpEd piece for the NY Times. After it went viral, Facebook and Twitter were full of people discussing her & her decision -- people with a cancer connection, as well as the general public. I even turned on NPR at lunchtime yesterday and heard Tom Ashbrook discussing it with callers (again, some with a cancer connection, and some without).

Some people were shocked she'd undergo such a radical procedure. Others applauded her for not only taking the step, but also sharing her decision publicly. Still others thought her move highlighted the divide between those with money and those without.

A few people asked my opinion, so I thought I'd take a few minutes to react.

First and foremost, if your family has no history of breast or ovarian cancer, you don't need to consider this surgery anymore than you'd consider removing any other body part. Jolie writes that her decision to remove her breasts was motivated by testing positive for the BRCA1 gene. When I was diagnosed with breast cancer at 35, this was one of the first tests my oncologist ordered. It would be nice to have a smoking gun, to say, "There! That's why I have cancer so young!"

But for me, the test (a simple saliva swish test) came back negative. It doesn't mean that I don't have a gene mutation somewhere in there that caused me to have cancer. After all, we all have cancer cells in our bodies, we just won't all develop cancer. I suspect that probably some day down the road, a test will be developed and the gene mutation I do have will be discovered.

And then my daughter may find herself facing the same decision Jolie faced this year: Would removing her breasts give her a better chance of survival?

Would I recommend she do it?

Deciding to remove a body part is drastic, and not to be taken lightly. Jolie writes that removing her breasts reduced her chances of getting breast cancer from 87% to 5%. It doesn't mean she is no longer at risk for another type of cancer, but at least she can cross this one off her list.

I suspect that her mother's fight with cancer and her subsequent death has haunted her. I bet that every day she looked into her childrens' eyes and felt the shadow behind her, wondering if she'd be alive to see her children grow up, to see her grandchildren. If that was the case, then removing her breasts has given her back an immeasurable quality of life. And you have to weigh that in this decision. Everything with cancer is balanced against quality of life, not just quantity. Tests, treatments, procedures -- and even the decision not to act -- it comes down to, what can I live with, day in and day out?

For comparison, your chance of dying in a car accident today is 47% higher if you are not wearing a seat belt. I'm betting it is a no-brainer for you to buckle up. But buckling a seat belt doesn't cost us anything. A mastectomy, particularly with no personal cancer present, is a hard decision and involves  body image issues, sexual function (remove the breasts, and you remove a large erogenous zone), childbearing concerns (done breastfeeding forever?), the risk of the surgery itself, the added risk of complications with the implants (though not all women who undergo this surgery will opt for reconstruction).

And there is the cost to consider, however I think this is one of the most misunderstood pieces of the Jolie story -- insurance will cover the cost of the BRCA test if you have a higher chance of having the gene (breast cancer history in your family, for example). And insurance will help with the cost of a mastectomy due to BRCA results and/or cancer. Insurance will even help with reconstruction.

In the end, it is a very personal decision.

I considered it myself. I considered removing my healthy breast at the time of my single mastectomy. But for me, the time was not right: I still hope to need that breast to feed another child. However, once that possibility or opportunity passes, I will be back to considering it. If removing it would mean I don't feel like I have a ticking time bomb strapped to my chest, then I'll do it.

And if Nia faces this choice one day, and asks my opinion, I will tell her this:

It is a deeply personal decision. You have to weigh both sides -- how you will feel with your breasts, and how you feel without them. If removing them, no matter how important they are to you, makes you feel safer, do it. Maybe it is something you do at twenty because you are more terrified of breast cancer than you are of not being able to breastfeed. Maybe you have your own children, and remove them at forty. Either way, it is completely up to you. And if you choose to keep your breasts, that is your choice too. I would not judge you for either decision.

For more information about BRCA and more analysis of Jolie's decision, go here.

And for a beautiful photography project collecting images of women who've had mastectomies, visit the ScarProject.

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Yes, It's Fake... The Real One Tried to Kill Me.

Yes, It's Fake... The Real One Tried to Kill Me.

I got fake boobs on Friday.

Actually, it was just one fake boob. Foob I've dubbed it. (Or "shoob" seeing as how it is actually a second-hand boob, but more on that later.)

The fact that I only needed one contributed to my decision to go with a prosthetic; I opted not to have reconstructive surgery after my mastectomy last September.

The reactions I get to this are mixed.

Doctors understand for the most part, but the general public (and my daughter) are a little confused. Wouldn't I want to look normal again? Totally. And while they would have put spacers in immediately following removing the cancerous breast, I was skittish about all the follow up surgeries (at least two additional) and the risk of complications.

Also, a little known fact: If you only need reconstructive surgery on one breast, they still cut and shape the healthy breast in order to better match the fake one. Anther obvious-if-you-think-about-it but seldom mentioned fact: If your weight changes over the years following your surgery, the fake one stays its same perky self, while the other one changes, which can lead to lopsided-ness -- which I already have, thank you very much.

By the time I walked into the little store in Los Gatos with the foobs and the wigs, I'd been walking around with one breast for more than six months. I was surprised how little this asymmetry bothered me. Before the mastectomy, I'd imagined I'd want to have a prosthetic ready and waiting for immediate use. It turns out, though, that having something pressing on that area when it is healing and during radiation treatments is unpleasant. And so time went by and my incision healed, and so did my feelings of discomfort.

And honestly, I didn't really feel like people noticed the mismatch.

Two things led me to the prosthetic shop: 1. The same radiation treatments that delayed my getting the prosthetic -- radiation causes the skin to contract and want to pull the shoulder in toward my sternum. Putting pressure on that area via a prosthetic reverses the contraction. But more than that was reason number 2: My daughter.

A month or so ago she and I were walking to the park when she stopped to pick a dandelion. She blew the seeds and almost immediately went from happy to sad. After a bit of prying she told me that her wish would never come true. I pried a bit further and she finally blurted out that she always wishes for the cancer to go away. I quickly told her -- somewhat relieved that this was all that was bringing her down: "But honey, I don't have cancer anymore! It's all gone!" Phew! Crisis adverted! But she was still sad. She mumbled, "But your boob hasn't grown back yet."

While I was comfortable being lopsided, there was an E-cup shaped hole punched in her universe.

So I made the long-awaited appointment at the foob shop. I got two special mastectomy bras -- they have little pockets in the cups for prosthetics (which range from silicone breast "equalizers" to light-weight foam breast "forms"). Some people need full prosthetics, some need fillers. Either way, the pocket keeps the thing from sliding out and plopping on the sidewalk.

In addition to the bras, I walked out with a two-pound silicon equalizer.

And equalize it did. I was really surprised how similar the fake one looked to the real one. So surprised, I just keep staring down at it all afternoon.

See?! You can't even till which one is fake can you?

And it wasn't as hot and heavy and awkward as you'd expect a two-pound blob of silicone stuffed in your bra to be.

But was Nia sold? We had friends with us in the bra shop and she seemed happy enough. Later at the park, she was over the whole foob thing and just ready to play. I tried to ask if she liked it but she didn't want to talk about it. It wasn't until we got home and I took it out of my bra to show Joe that she got really excited. She wanted to hold it and when she did, she literally lit up. For about an hour that night she walked around with it, cuddled it, slapped it (?!), played dress up with it (it looks like a little pregnant belly on her), laid it over one of her stuffed animals and declared it "pork." (Later when I was looking for it, she said it was cooking...??!)

The foob made her really, really happy. Now she wants to hold it all the time.("No, honey, you can't hold it now. Because I'm wearing it!")

I never in a million years expected that.

Nor did I expect to like it as much as I do. Like I said, I was pretty comfortable being lopsided. I had no idea what I'd gain by strapping that thing on. But the thing is, nature favors symmetry. It's obvious: My clothes look better with two matching boobs. But what was less obvious was how confident I'd feel wearing the foob. I feel... visible again. I thought that people didn't notice the asymmetry before, but maybe in our society that is so breast-centric, not having two matching breasts (and two big ones at that) made me not so much conspicuous as invisible. People were not only not noticing, but I'd swung to the opposite side of the dial into a-sexual.

I'm not planning to wear it every day, but it sure is nice to have the option. It is pretty funny getting out of the shower and seeing my stack of clothes now.

Suddenly I'm 13 again with brand new boobs -- only this time I'm emotionally prepared for it, and my friends aren't jealous. And if they are, they can come over and take the foob for a test drive. Like Nia.

Looking Back: My Cancer Year in Photos

It's been one year since I found that fateful lump.

One year of discovery, diagnosis, treatment, and recovery. Between finding the lump and being diagnosed, Joe, Nia & I took a trip to Tahoe to celebrate my 35th birthday. Tomorrow, we are heading to Tahoe again. A bookend to the cancer year, and a kick-off to my 36th year. Cheers!

~~~

The lump...

Getting the port for chemo installed; my first surgery...

 

The day before my first chemo treatment...

 

And now, growing my hair back; getting used to the new me; getting stronger every day...

So long cancer year!

 

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Everything is Normal Again... Sorta

Everything is Normal Again... Sorta

For so long, I longed for everything to "just go back to normal." 

I wanted my life back the way it was before the cancer. Things were going so well -- work was humming, parenting was clicking, Joe and I were thinking of adding to our family... And then the cancer diagnosis came and suddenly, in a flash, a year was taken from us. Some things froze in place, other things were set back. Some things may have been striped from the horizon forever.

My 1-year "cancerversary" is coming up in one month, and the light at the end of the tunnel is almost dazzling. Six weeks past my last radiation treatment, my brain is clearing. My skin has already peeled & is healed again. The mobility of my left arm is all but where it was prior to the mastectomy. 

Everything is normal again. Sorta. 

There is a post-cancer cliche I keep hearing: "New normal."

In some ways I welcome the new normal, and in some ways I want the old normal. The new normal includes an eyes-wide open feeling, a thankful-to-be-alive feeling, but also way too many on-going doctor appointments. 

And compression garments. (I'll get to that in a sec.)

Things will get in a good rhythm with work, preschool, exercise  & writing and then suddenly I have to spend a huge chunk of time at a doctor's office, surrounded by other patients who look... well, sick. Wheel-chair bound, bald, pale, tired... The club no one asks to join.

Last week I added in a new doctor: The occupational therapist in the Lymphedema Management Center. 

It seems when it comes to lymphedema, cancer is the gift that keeps on giving. What is it? Swelling & pain caused by the removal of lymph nodes and complicated by radiation therapy. In my case, I had 13 nodes removed from my left arm pit during my mastectomy. That means 13 fewer nodes in the lymphatic system to manage the waste fluid in my body. As the OT nurse put it, "Thirteen garbage trucks were taken off duty in your waste management program."

Awesome.

That means there is a risk of painful fluid build-up now or tomorrow. Or, thirty years from now. It never goes away, and can crop up any time. (More on the lymphatic system here.)

So I'm in the clinic to find out how to avoid it, and how to manage the light swelling I'm experiencing now. The short answer is that I must wear a compression sleeve when I exercise or travel to high altitudes. I must wear a compression insert in my bra as well. I should take up swimming (think: full-body compression). And I'll never wear my wedding ring on my left hand again.

Don't mistake me: I'm grateful lymphedema isn't simply a given & that I can learn tricks to combat it/manage it. It is just one more way that my life is forever changed. 

New normal. 

~~~

Check out this cool interview I did back in December with Parenting With Cancer!

 

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Green Tea & Chocolate: The Blog

As a student, I always loved new school supplies, particularily brand new binders and notebooks. All those blank, fresh pages. Some people might have found them daunting. I, on the other hand, took them as both a challenge and an opportunity. 

January is sort of the same thing. A new year, all stretched out before us.

In turning over a fresh leaf I've decided to harken back to my school days and open a fresh notebook -- or in 2013 speak, to launch a new blog. I'll continue to post here about all my adventures with Nia and my thoughts on parenting with (or without) cancer. But I am embracing a new anticancer life now, and so will use the new blog, Green Tea & Chocolate, to chronicle my journey in health: mind, body, enviroment. 

I'm excited to share recipes and my ups and downs in charting this new-to-me territory.

I hope you'll follow me over there as well as here. 

Cheers!

My Power Animal Pays a Visit & Wrapping Up Radiation

This morning was fairly typical: In the still-dark of the night, my daughter snuggled into bed between my husband and I, and drifted off to warm, cozy, dreamy sleep. I knew she was dreaming because her feet started kicking, like a puppy dreaming of running and playing.

I snuggled next to her and closed my eyes.

Minutes ticked by.

Slowly it dawned on me that I was wide awake. I rolled over & stared at the ceiling.

The digital clock read 4:30a.

Is this normal?

I mean, is this the new normal? My new normal?

I keep waiting for things to "go back to normal." To go back to the way they were before all the cancer treatments. But when I voiced this urgent request, both my dad & my therapist made the same startling suggestion: Maybe now there is a "new normal."

So as I lay there in bed in the wee hours, my gaze drifted out the sliding glass door into the backyard. Although it was still very dark, the backyard was faintly lit from the Christmas Tree lights in the living room. As I watched, a faint silvery shape -- a little animal -- scurried along the top of the fence, disappeared (presumably to climb down the tree, not because of magic), and then reappeared on the ground.

I watched it rooting around on the ground. It was easier to see if I didn't look right at it, but looked slightly passed it.

Suddenly I knew what it was. A baby opossum.

Is this a sign, I wondered? The sign of the new year, both 2013 and my post-cancer year? It is a baby after all. But... it is also an opossum... *shudder!*

OK, Internet, what have you got for me? What is the symbolism of the opossum?

Opossum may be relaying to you that you are to expect the unexpected and be clever in achieving your victory. This could be a victory over a bothersome salesman or a noisy neighbor. In essence, opossum is beckoning you to use your brain, your sense of drama, and -- surprise! -- to leap over some barrier to your progress.

Whoa. The Internet did not disappoint!

The opossum symbolizes "diversion." When all else fails, the opossum plays dead. When the confused rival walks or looks away, the opossum runs to safety. If opossum shows up for you, you are being asked to use strategy in some present situation. Victory is sweet when the victory is one of mental as well as physical prowess. (Source.)

Huh.

OK.

Gonna have to think on that one.... but it sounds promising.

New Normal, here I come!

Thank you, baby opossum.

~~~

PS. Today is my last day of radiation treatments. Woot! While it has only been 6 weeks -- 28 treatments -- I'm so ready for them to be over. My skin is red and sore. Sleeping is difficult because the sheets or my shirt or whatever feels like it is rubbing my skin off. My arm-pit is scabbed.  I have a little routine between the Calendula lotion and the Hydrocordizone. And now there is a new one. Silver sulfadiazine. That one I'm supposed to use when my arm pit begins to ooze (my least favorite word!).

I don't mean to sound complain-y.

One big reason I wanted to write about my cancer journey was so people facing this same struggle would know what to expect. So here is my reflection on radiation:

• It isn't has hard as chemo.
• It doesn't hurt as much as recovering from surgery.
• But it does hurt. More than a sunburn.
• Use the lotions & creams liberally.
• Be kind to yourself. Radiation is no joke. You're still very much in the thick of it all.
• Celebrate when you're done.

 

(Photo credit.)

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A Visit From the Hair Fairy

Hair.

Yep, there's more of it.

And the topic of my hair keeps coming up in conversation... how much there is, how thick it is, how to style it. This is the hair on my head, of course.

I'm noticing all the other hair that is coming back too. I wish I could have maybe personalized the post-chemo hair order from the Hair Fairy.

Head hair? Check.

Eyelashes? Check, check.

Eyebrows? Ditto.

Arm hair? Well, ok.

Arm pit hair. Hmmm... reluctant check.

Upper lip hair? No. No check. I said no hair on the upper lip! Bad Hair Fairy.

What's that old saying? Beggars can't be choosers?

I'm pretty much still wearing a hat all the time, but people, it turns out, really want to see my head.

And I'm a pleaser.

Even though I don't know how to style it yet. And my head gets cold.

Here it is:

Thank you, Hair Fairy.

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This Body Belongs to Me... Doesn't It?

Do you remember the part in the Hunger Games when Katniss is in the arena for the second time and she finds the edge, where the arena ends? She shoots the arrow into thin air and makes a tear? 

I had a Hunger Games moment the other day.

(If I just lost you because you don't fancy yourself a reader of YA fiction, keep reading. You'll get it in  a sec.)

There I was, flat on my back, arms stretched back over my head, hands gripping plastic handle bars. Above me was a photo of a redwood forest fixed to the ceiling. Immediately beside me was a huge x-ray machine, which rotated around me, taking pictures of my bare chest.

I kept staring up at that picture. It was a huge picture -- maybe six feet by 3 feet, light from behind. You were meant to get lost in that picture.

But suddenly I noticed a small hole in the picture, and spanning out from the hole were green lines. Lines made from laser beams.

And while I never thought the forest was actually there, the laser beams were jarring. The hole was startling, too. I found myself thinking, This isn't real. This whole scene has been fabricated...

And suddenly, not only was the picture not real, but my whole situation became surreal.

My mind came suddenly back to the present. All around me, faceless technicians came and went, occasionally adding marks to a Sharpie-map only they could understand.

A map on my body. On my physical person.

Another little tattoo was added to the mix. Sometimes I was spoken to, usually not.

And it is moments like this -- and there have been a handful throughout this journey -- when I feel less like a person with cancer and more like a cancer with a person.

Or maybe just like a cancer, period.

Only the cancer is gone now. This body belongs to me... right?

I began radiation treatments yesterday. Down one, 27 sessions to go. Five days a week.

Turns out that while they are doing the treatments, they draw on me some more with a Sharpie. I'll stop trying so hard to scrub it off. (The initial map-making was in the "dress rehearsal" appointment.)

As I lay there, I focused on the music in my ear-buds & blinked back the tears in the corners of my eyes.

You need to lay perfectly still, came a voice from somewhere beyond my line of vision.

~~~

I feel so grouchy about all of this and this morning I suddenly put it together: I don't WANT to be a patient anymore. I'm tired of leaving my crying child to go to yet another cancer-related doctor appointment. (When will the cancer be gone? she asks, pleadingly.) I'm tired of hospital gowns (even my own).

I'm tired of being Cancer Girl.

This body belongs to me. This body, this medical body, I want it back.

Breathe in. 1 down.

Breathe out. 27 to go.

 

Dark Chocolate is My Weapon: What's Your Anticancer Food?

It's 6am and my eyes pop open. I just remembered something I read last night right before bed:

Dark chocolate will cause my cancer cells to commit suicide.

(This picture is here to strike terror in the heart of any microscopic cells wandering around my body looking for a new place to set up shop -- because my cancer reads my blog.)

Anyway. Committing suicide, yeah. Ok, it wasn't necessarily written like that exactly, but pretty darn close. Here is what David Servan-Schreiber, MD, PhD actually said:

Blueberries contain anthocyanidins and proanthocyanidins, molecules that are capable of forcing cancer cells to commit suicide (apoptosis). Other rich sources of proanthocyanidins are cranberries, cinnamon, and dark chocolate.

Dark chocolate. YES! Die suckers!

All this is from Dr. Servan-Schrieber's book Anticancer: A New Way of Life. In the book he asks us to imagine our bodies like a fresh garden bed. You know, soil. And the cancer is a weed. Our goal is to create healthy soil that does not purposefully -- or accidentally -- fertilize weeds.

What makes the weeds grow? Let's call them tumors for a sec. Tumors need an environment rich in inflammatory factors for growth. Remove the inflammation and they cannot spread. Major dietary "fertilizers" for "weeds" are refined sugars, excess omega-6s, and growth hormones.

A few posts back I wrote that it is my job now to create an environment in my body that is inhospitable for cancer... and suddenly the textbook for how to do this falls in my lap!

But it isn't a book only for cancer survivors. Really, everyone should read this. As Dr. Servan-Schrieber puts it: All of us have cancer cells in our bodies. But not all of us will develop cancer.

Cancer flourishes when there are more promoters [dietary factors that feed cancer growth] than anti-promoters. Cancer growth slows or stops when the anti-promoters prevail. It's a push-pull process. Promotion is reversible, depending on whether the early cancer growth is given the right conditions in which to grow. [p. 109]

This last quote is included in the book and comes from T. Colin Campbell, PhD, a professor at Cornell University, and the author of "the most far-ranging study ever carried out on the link between cancer and dietary habits."

So what will I eat now? Here's a short list of the highlights:

Various kinds of cabbage

Broccoli

Garlic

Soy

Green tea

Turmeric

Raspberries

Blueberries

Dark chocolate

Olive oil

As Dr. Richard Beliveau, a researcher in biochemistry and professor at the University of Montreal, puts it: Cancer is like diabetes. You must look after it every day.

I have never heard anything like that. Cancer is like diabetes... Every. Single. Day....

So that's what I'll do. I'll give my Herceptin a little boost by consuming olive oil every day*. I'll avoid refined sugars, white flour especially.

I'll feed all the cells of my body with green tea.

And I'll figure out how to consume Turmeric.

~~~

*At the Catalan Oncology Institute in Spain, researchers "demonstrated that polyphenols and oleic acid [olive oil] can inhibit expression of the HER2 gene. It is possible that the consumption of olive oil by women taking Herceptin may increase the efficacy of the medication." [p 112]

Photo credit here.

Seeing Pink

Can we talk for a second about this whole "pinking" of October and Breast Cancer "Awareness" Month?

This might upset you, gentle reader, but I have to get something off my chest (pun intended!):

I don't buy it. Literally.

I don't buy that making everything pink has made anything better for breast cancer survivors -- or our mothers, grandmothers, sisters, daughters, and friends who've lost their battles to this horrific disease.

Does awareness really do anything for anyone? Particularly the selling of awareness?

Do pink ribbons literally everywhere save lives?

Has the pinking of the NFL improved breast cancer outcomes?

Here's the truth:

Breast cancer isn't sexy. Sorry, Facebook.

Breast cancer isn't an all girls sleep over party with pillow fights and cute pajamas.

The truth is -- the unsexy truth is: Breast cancer can kill. And some women loose their breasts to save their lives.

I think all that pink has anesthetized the public to what breast cancer is really all about.

Breast cancer is scary, painful, depressing, make-you-so-mad-you-see-red.

Breast cancer is my daughter suddenly crying into my one remaining breast that she loves me and doesn't want me to die. Breast cancer is me gripping my husband's hand in the middle of the night, scared that I might not be here for all our wedding anniversaries. Breast cancer is my grandmother dying in a hospital bed, so high on morphine she didn't recognize us anymore.

Breast cancer is all the women in the Chemo Lounge, juggling their lives with their treatments. Some of them -- too many of them -- will be doing treatments for the rest of their lives.

Breast cancer is the brave women in the clinical trials, and the doctors and scientists working year after year after year to bring a life-saving drug to the light of day against all odds.

And what about other cancers? Why is October all about Breast Cancer? Why not raise awareness for the fighting of all cancers, especially children's cancers?

And what about the men diagnosed with breast cancer? I'm sure they love the pink ribbons.

Here is my point:  Think before you pink.

Instead:

• Make a donation directly to a cancer-fighting/cancer-support organization
• Do an act of kindness for a friend who has cancer
• Save yourself: Get a mammogram/get your moles checked/get a colonoscopy (I'm scheduling a mammogram for my right breast right now!)

Here is my pink October:

PS. If you're up for more, check out the SCAR Project.