Rights

(photo courtesy Archives.gov, one of my favorite websites)

Social Rights for Cancer .... People 

(one woman's perspective) 

Once you are diagnosed with cancer, you immediately inherit a brand-spanking new group of inalienable rights. At least, you should. Here are some thoughts from someone who has been a caregiver/patient/advocate/observer/concerned friend for a good bit of time. 

You get to choose your title. 

Probably not "Tsar" or anything like that, but now that I mention it, sure. You can call yourself a Tsar. Or patient, survivor, thriver, pink, warrior, hero, fighter, flower mama, fragile patient, stalwart trooper, pink power mom, angry advocate, sparkly unicorn cancer princess - it doesn't matter.  You can call yourself wizard for all I care.  This is your trek, you own the rights as if you are a member of the Plantagenet dynasty.

Scars.

Show them. Have them photographed, gloriously, and put on giant canvases for a world-wide gallery tour. Because, beautiful! Or hide them, cover completely and make your cancer your own business, for no one else to know. Your path, your choice, your decision. Social media should bow to your options if you choose to share pics of these bad boys, too - remember, you are now fully titled. 

Hair.

 Rainbow Afro Wig? Yes, please.  Bald with a henna tattoo?  You betcha. Scarf, ballcap with little fake bangs, motorcycle helmet, skullcap, lace doily? Okey dokey. Not one single thing except your shiny head? Yep. The general non-title cancer society is permitted to say only one thing when observing your new choice of headware: "you look amazing!".  That is all. (Please note: when you compliment us on our wig by saying something like 'gosh you can hardly tell that is a wig' you automatically identify the fact that we are sporting a horrific wig, like some gaudy toupee. So stick to the 'amazing' line.)

Treatment.

Are we making morning smoothies with magic pond scum from Madagascar as part of our holistic therapy?  Maybe.  Our decision, not yours. Do we know that chemotherapy/radiation/everysinglething under the sun is toxic?  Yep.  Do we want to hear it from your mouth? No, unless you are an oncologist.  More specifically, our personal oncologist. Have we tried yoga, did we know that your sister/aunt/cousin's step-dog became miraculously cured after visiting a special doctor in Mexico?  Good on 'em, but really, unless we specifically say 'hey, can you tell me everything you've ever heard about cancer', please don't.


Friends, we've really tried to talk to our docs and nurses about everything. The icky, hard, awkward and downright embarrassing things.  Sometimes we even email them at 2 am if we hear about some new miracle drug and want to learn more.  We live this stuff, so there are very few things you might tell us that we haven't heard before.  BUT please know, we love that you try. That you want to help.  And we understand that you might just not know what to say, or how to help.

For that, I respectfully guide you to a handy-dandy list of things to do to help us.

Sincerely,

Heidi.  (my title: Pink Floyd)

Devon

 I have an image on my Facebook page that has been the promulgating factor for several conversations. Who took it, why, when, where, how come you are looking down, why are you sad, etc. Yesterday I had to do a search on my email and accidentally found an old message from Devon; it has prompted me to talk a bit about that photo.

Devon Williams was a bright spot in a pretty dark time for me, and I don't think she ever realized the full scope of what she did for my heart.  There are no coincidences in this world, I believe that firmly.  When I made a phone call to a cancer center in Pasadena a few years ago to locate fellow patients with a specific breast cancer diagnosis, Devon's was the first name suggested.  Do you think she might be willing to connect with me, I asked the director.  15 minutes later, a fireball actress from California was calling me.

She was in a parade with me, and it was nice. It was a shadow; a pale imitation of the true beauty of that meeting. She had an amazing husband who looked at her as if she hung the moon, and 2 little daughters that were absolute perfection.  The entire family allowed me to be with them every moment we were not working on the parade. For a mommy who had to be away from her own kiddos, snuggling with her sweet girls made me less homesick.  And to be with such a darling, kind, charming family on a work trip? Sublime.

So that was a weekend. Devon took that and ran with the connection we had made.  I received emails from her, we shared photos on social media, we called.  But Devon had a passion for hand-written notes. She sent me words of encouragement, to keep going through difficulties. She reprimanded when I allowed others to try to write darkness into my future.  She wrote about the flowers she'd seen that day, and about her daughter losing a tooth. She wrote life, and did so with beautiful abandon. 

Then she asked a favor; the kind that drew an immediate 'no way' from my heart. But how could I say no to her, after all of this? We had become sisters, I simply couldn't say no. Her request? That I return to Pasadena, speak at an event and be photographed for a book about breast cancer patients.  I don't do photographs, I pleaded. I'll speak at any event for you, dear one, for the rest of my life, but I can't do photos like that. My hair, post chemo, has never grown right.  My surgery did not turn out well, so I look like one of Dr. Frankenstein rejects. She told me that this I needed to come do this...please.

Back to Pasadena. Event was delightful, just fine. Then we went to the studio, and I was heartsick. These photos were to be exposing, to show our scars.  My photo shoot was private, but that still meant that Devon, the photographer and the makeup artist would see me - scars and all.

As I reclined in the makeup chair, the artist approached me and tilted her head.  She told me her name was Jan, and was it ok if she moved my hair a bit so she could get a better look at my face structure?  You won't have much to work with I'm afraid, I cautioned her. For some patients, chemo leaves your skin sallow and tired. Depending on the diagnosis/surgeries/treatment, some women lack estrogen which play a huge part in appearance change as well. Jan took my face in her hands, and gently smoothed my eyebrows.  Look at this, she said, here, take this mirror.  Do you see how beautiful they have grown back?  Goodness, even your eyelashes are starting to fill in nicely. They accentuate your eyes in such a lovely way. Have you noticed that?

Why no, you wonderful Jan, I hadn't. To be honest, I hadn't worked up the courage to look in a mirror for quite some. And now this gentle, compassionate soul was treating me like I was somebody, and sharing the kindest words I'd heard in a long, long time. Turns out she is an Emmy-Award winning makeup artist, and a fellow breast cancer survivor. Heart of gold and hands of magic, that one.

Then out we walked to the photographer, Catherine. Would you like to take off your shirt, so we can photograph your scar?  She asks.  Lifted by Jan's kindness, I feel comfortable enough to say that, in fact, the last thing I ever want to do is take my shirt of in front of anyone. Ever.

Catherine looks at Devon, who now comes over to talk to me.  Heidi, she says, in that voice of hers that makes me realize I'm about to be convinced to do what is needed.  Heidi, we need for others to see that we aren't alone. This book will be published so that a woman in Topeka can realize her scars match mine.  The woman in Long Island knows she has a cancer doppelganger and her mastectomy turned out the same way.  That world wide, our fellow patients could find solace in our journey and boost them to continue their own paths.

Catherine, the amazing photographer, quietly told me why she was doing this. Her own mother had breast cancer.  She said that for 30 years she'd saw her dealing with lack of self-esteem. When her momma looked at herself in the back of the digital camera it was the first time since her surgery that she had looked directly at her own body.

Both Devon and Catherine assured me that I could dress however I wanted. This was about showing scars to empower, to take back the idea that beauty is what we see. We are beauty, no matter what time and surgery has done to us. So I did.  I wore pearls, a beautiful coat that I used almost daily since I traveled so frequently, and they started taking photographs.

Just as this photo was being taken, Jan came out from behind her counter.  The warm California sunshine was just fading, and it caught me full-face.  Jan laughed, and Devon asked (with a big smile on her face) what was so funny?  Not funny, said Jan, just perfect. Look at her eyes, do you see how beautiful they are?

And I cried.  I put down my face and cried, as I am doing now as I write this. I cried because that woman who was so willing to talk to me, a stranger,  was now including me in this amazing group.  Because I was blessed enough to be with 3 people who were such incandescent talents. That for a moment, I was standing there with my giant, jagged scars exposed.  And in that moment my self-esteem issues were ignored and these women just looked into my eyes.  And I realized the scars were now my beauty marks.

So today, I found an old email from Devon. I then went on Facebook and looked at her beautiful daughters and I see her smile in the amazing young ladies they have become. I applauded and stand in awe of her husband, doing the job of 2 parents and doing a fantastic job.  I went to Jan's page and smiled as I saw she was jetting off to yet another fun gig.  And I re-read the article from so long ago that celebrated Catherine's stunning work and vision.

I miss you, Devon. I'm so thankful that you encouraged me to stand in the light, pick up my face, and laugh. And cry.  And feel just a bit more comfortable in this skin. I thank God that I was able to know you, that you introduce me to Jan and Catherine.  I'll never delete those emails, and I'll always cherish your letters.

http://www.pasadenaweekly.com/cms/story/detail/taking_back_beautiful/9256/

Mommy Has Cancer (and other tough things I've had to say to my children)

My sweet Alex was just a little peanut in elementary school when I picked her up from class that day.  I'd just learned, on phone call in my office downtown Chicago, that I had breast cancer.  Now I had to look into her beautiful face (that you see above) and tell her, somehow.  Explain cancer to a child.

All she knew of cancer was what I'd inadvertently taught her:  Cancer took away many of the people we loved and that loved us. We did the Walk & Roll event downtown since she was born (before, actually). We used to pin the 'walking in memory of Grandma Roberta' tag on her stroller when she was too small to actively participate. Licked yogurt lids, bought endless amounts of pink ribbon merchandise, joined in where/whenever possible just to help 'the cause'...without knowing exactly where all those dollars were going.  We didn't care, we just wanted to do something.

And now here we were.  She was so young and terrified.  "Your mama died, and so did everyone else. I don't want you to die yet! Not until I'm really really old...like at least 30!" At the time of my first diagnosis, it was as if I were on a planet alone; there were scant few resources to help young women going through breast cancer.  A young mom?  Even fewer resources - we were on our own.

I found gentle ways to explain that chemotherapy, while hard to take and yes toxic, is also hard for the cancer to take.  I talked her through what the surgery might be like (in round, simple terms - nothing graphic).  That the recovery would be tricky, but yes, she could hop in bed with me.  Hug me. Snuggle with me. The research we did was an amazing education for both her and myself, and to this day has provided a good foundation for understanding what it means to be proactive with health care.

Her little sisters were another story entirely.  Catie was 3, Bella was 2.  Bella laughed when she saw my bald head, and that was the end of her curiosity.  Catie, always the fashionista even as a toddler, requested that I always wear a scarf or 'fake hair'.  There was a great debate about why on EARTH I would opt for a wig that looked so much like my other hair.  Couldn't you just try the purple and silver wig, mommy?  Just for a little while?

And then there was Noah. Pregnant with him for my first diagnosis, he went through all the chemotherapy with me.  The surgeries and radiation that followed his birth became just as much his story as it was my own.  5 years later, with a new tumor, I had to explain the situation to a little man who assumed (like the rest of us) that cancer was something in our past.

Through it all, I relied on my faith, my family and a growing network of breast cancer sisters.  I now know where to direct newly diagnosed mommies and daddies when they need a book to help explain what chemotherapy is (NoWhere Hair), when they need to find an app explaining how to do self exams (Get In Touch), when new scarves are needed for bald heads (http://hopescarves.org/), when they need someone to help watch the kiddos (my little waiting room and nannyangelnetwork), when bills need to be paid (Pink Fund) and vacations seem impossible (Little Pink and Camp Kesem). And of course, an amazing online resource of strength and compassion (#BCSM)

There is help - you don't have to walk this journey alone.  Reach out to us. Allow us to help lift you and your kiddos.

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