Living: Me and Elizabeth Edwards

No scandal gossip here. Press coverage of Elizabeth Edwards' metastatic breast cancer has me steamed, and as a sister cancer patient, I want to say something about it. My story with breast cancer parallels Elizabeth's. Elizabeth Edwards and I are both *living* with cancer. We are alive!

My first occurrence of breast cancer happened back in July '04; I had surgery, then chemo started the day after Kerry/Edwards lost to Bush II. What a gloomy day in the chemo lounge at UC San Francisco! The next day Elizabeth Edwards announced she, too had breast cancer. My own surgeon appeared on the local news, explaining Mrs. Edwards' treatment. My heart went out to Elizabeth Edwards as we coped with chemo at the same time.

Readers know that I applied to grad school while in chemo, got in, finished chemo, and spent two glorious years studying for an MFA in fiction, while raising my children and loving my husband. In March 2007, just before I graduated, Elizabeth announced her terrible news... news I hoped I would never have to hear for myself. I tried not to read too much about her disease and treatment. I was busy juggling family life while preparing to teach college English in the fall of 2007.

One month into my first semester of teaching, I got the same news Elizabeth had received not long before. Metastatic - spread to the spine, lung and most troubling, the liver. Like Elizabeth, I was put on hormone treatment. I looked healthy still, 45 years old, fit, lots of hair. A little overweight from cancer treatment & hormone therapy, but the metastasis took care of that!

Unlike Elizabeth, I couldn't stay on Femara. It didn't work for me, and I started intensive chemo in November 2007. That seems so long ago. I've been getting chemo once a week - three weeks on, one week off - for ten cycles now. For a long time my doctor kept telling me -- more chemo. Just keep getting chemo.

Today my doctor decided, without much warning, that I get to go off chemo after this next 4 week cycle, and go on an aromatase inhibitor. This means so much for my quality of life, you cannot imagine. My hair will grow back, and I won't feel tired and draggy from the cytotoxins in my system every week.

In this last ten months of chemotherapy, I have managed to travel a little, give four parties, finish teaching that college semester, give a talk at my graduate school, write 200 pages of my novel, blog like crazy, read books and attend my writers' group, and attend movies, dinners, parties and school functions with my children. I've baked cakes, cooked soups, crafted artisan bread. (Cooking is my hobby). I've prayed, meditated, tried a little yoga, hiked in the redwoods. I can do almost two miles at a time.

Every week I take the bus in to San Francisco for chemo, because I like the independence of commuting in. People don't know I'm a cancer patient - if it comes up and I mention it, folks are staggered. One guy was complimenting my hairdo and clearly chatting me up - I had to tell him I am actually bald, it's a wig, and I am on my way to cancer treatment. My husband tells me I still look hot, and I am pretty sure he means it.

I do not look the way I did a year ago. I don't feel the way I did a year ago. But I am very much alive. In some ways I am MORE alive, because I have shed many of the resentments and obsessions that keep me from enjoying this moment. And when they arise again, I take them less seriously.

I'm a more patient and present mother. I want the boys to remember me at my best. I still make mistakes but I practice a lot more kindness and good communication, with them and with my husband.

Now about Elizabeth Edwards. Press coverage of her often includes comments that "she's dying." Or they talk about how bad her prognosis is.

Fiddlesticks.

Elizabeth Edwards is living. First of all, I have been on Femara, which seems to be what EE is taking based on the Vanity Fair profile; my experience is that it's very easy to tolerate. You take a pill every day. Big deal. Elizabeth's cancer is not spreading and she is doing what she wants to do. She has problems. But she is living her life. And so am I.

I meet women all the time in the chemo ward who have been living with metastatic breast cancer for YEARS. One lady has had it for twelve years.

I am LIVING with cancer, and so is Elizabeth Edwards. Don't write us off.

Nobody, including her doctor, knows how long Elizabeth Edwards has, and nobody knows how long YOU have. I have already, sadly, outlived one of my glorious, beautiful, healthy friends who grieved with me when I was first diagnosed. So enjoy this moment. It's all you've got. It's all I've got.

I am so glad to be alive here, at sunset in Oakland, CA, on this green and spinning planet, along with Elizabeth Edwards and millions of other brave cancer patients LIVING with this disease.

Comments

[Val]

Ahhhh. . .

I feel like today your post was written for me. I needed to be reminded of everything you said. Thank you.

[gloria p]

Bravo, Leila. You are the bravest, best adjusted person I know.

If we all weren't in such denial, we'd all admit we were "dying" from the day we were born.

[Leila Abu-Saba]

Thank you Val and Gloria... For me, Gloria, I prefer to think that we are all living until the hour of our death...

[Ingrid]

Hi Leila,

I came across your blog this morning by googling -yes, you guessed it! - red lentil soup! Ha ha. But instead of just copying down the recipe, I felt compelled to also click on your main page and read your latest post. Something in your eyes just caught my attention.

What a gift to read your post. You are right, none of us knows how long we have. Each of us should live the way you do. I have a friend with breast cancer, and she is one of the most amazing people I know. She embraces life with such vigor and spirit that she inspires those of us that are "healthy."

Thanks for the reminder and inspiration. You made my day!

[Leila Abu-Saba]

Hi Ingrid - thanks for dropping by! That red lentil soup brings me the nicest visitors. And thank you for your kind words.

[Janet Dietz]

Hi Leila. Great post. I, too, prefer the living with cancer phrase. A pet peeve of mine is that obituaries often say so and so died after a long battle with cancer. Why doesn't anyone die from a long battle with congestive heart failure? I dislike all of those war metaphors anyway. Janet

[nona]

Spectacular news!! Made my week. And a beautiful post, too. What a great happiness loop you created out there on DK. Shine on.

[Richard Witty]

Thank you for your courage and good words on this.

You give the world a lot of hope.

[tribalecho]

I havn't been here in a long time. You're on my desktop running Windows 98, I had forgotten how much I loved your blog. I really like your love of Oakland, a much maligned city. You remind me of Tower of Power.

Many loving regards. Be back soon, even after I get up the gaul to go to the crazy traffic up-scale mall area of Atlanta to finally get my Apple lap-top fixed.

[Yours Truly]

& I thought my life really sucked. " 'Coz I'm ugly & I've got no friends" (mimicking the kid who drove over seven people in Shinjuku, Tokyo, Japan, prior to stabbing 'em ).

You're a strong woman. An inspiration to many out there ( I sincerely meant that ).

Have a blessed day ahead!

[jan.s]

Leila! I visited your site for a Red Lentil Soup recipe! Ahhhhhhhhh and once again, as I've found when my intuition takes me to the place I need to be...more than a recipe arrives on my plate! I was diagnosed with breast cancer in 1991 and here I am at 61 still kicking! I want to send you all the love I can muster to say you're one amazing and beautiful human being. I wish you wonderful and enlightening moments of continued realizations. When and if you're interested check out the following url:www.taramandala.org/arts_cancer.htm - 23k also on that same site if you're interested listen to the audio teachings...so so beautiful and strengthening. www.taramandala.com/Media.html - 6k

[Susan Schembri]

I just finished chemo and radiation in April for infiltrating ductal carcinoma ,had my first mammo and ultra sound was devasted to hear theres something suspicious showing up .All weekend I have thot I am going to die .Youre storie and affirmations of living with cancer are profound .You have given me back hope and my fighting spirit .Thankyou !

[Lisa]

Thank You!! I was originally diagnosed with breast cancer in April 2003. I handled rediagnosis with grace in February of 2008. Have been on Femera until Friday...when I was told that a bone scan showed some progression (also have it in the lungs and suspicious areas in the liver). Looking at changing treatment this week...had a tough weekend. Am a strong Christian and believe in God's Will; however, fear for my 9 and 6 years old sent me googling this morning as my third grade classroom is taking a test. Tears in my eyes as I read your blog. Still a little fear, but great to know that there is the possibility to see my kids graduate from high school!! God Bless You!

[anita]

Hi Leila, I found your blog from a google search I did after I received my own diagnosis with breast cancer in late September. I've come back several times and am enjoying reading everything you write. I am so impressed with you and your strength and passion. Reading your blog has given me a lot of courage.

I've been an "intermittent blogger" over the years (not a very good one, but a blogger nonetheless) and you have inspired me to reactivate my blogging activities, to try to reconnect with some of the on-line friends I've made over the years, and just try to get through this without withdrawing into a well of self-pity. Right now I'm feeling the self-pity, but knowing I'm not alone makes it so much better.

Stay well. And THANK YOU for all the good things you do and write about!!!