You Have a Certain Glow About You: The Radiation Report

I'm cancer-free and now on the last leg of treatment. It took a little longer to get started than expected, but I officially began radiation treatment this week. Two treatments down, only 28 to go.  Sounds daunting, but I’m hoping it will go fast.  Radiation is 5 days/week for six weeks total.  The appointments are short and the nurses are cheerful – they even sing to me – so I can’t complain.  Plus, starting next week I’m jumping into my Radiation Silver Lining Plan.  Since I have to drive up to Seattle from Olympia every day anyway, I’m going to stick around and take dance classes.

This whole thing took a while to get going because we were waiting on insurance.  My doctor had recommended proton therapy. Proton is different from conventional radiation because the radiation can be programmed to stop and bounce back at a certain point, rather than continuing through my body.  Since the area affected by cancer is just above my heart, conventional radiation poses a slight risk of damaging my heart, where proton therapy would protect my heart. Ultimately, insurance denied proton therapy.  We could have appealed again, but I really just want to get this stage of cancer treatment over with so I can move on with my life. I can't get too gritchy about insurance since, by the time we're done with this whole thing, they will have probably shelled out around $200K. Besides, my doctor was able to come up with a great plan through conventional radiation.  We are using a “breath hold” method which is exactly what is sounds like: I take a deep breath and hold it during radiation. That expands my lungs and pushes my heart back out of the way of radiation.  Pretty slick.  That, and all of this deep breathing is making me super relaxed.

I now have five tiny tattoo dots on my torso so they can align the radiation machine each time I go in.  I’m becoming quite the painted lady.  When they set me up, the nurses draw all over me with a Sharpie.  My kids think this is hilarious.  The side effects are supposed to be fairly mild.  Some people experience fatigue.  It’s expected that the area they are radiating will become red and sore over time and I am religiously applying a special gel for radiated skin.  But, compared to chemo, this feels like nothing.

One of the questions I get asked quite a bit is why I need to go through radiation if I’m now cancer-free.  Radiation is insurance that cancer won’t come back.  Because they found cancer in my lymph nodes, radiation is a critical part of my treatment.  Without radiation, chances of cancer returning are 30-35%. With radiation, the risk is reduced to around 5%.  One of the earlier studies done on this showed that for women who had breast cancer that spread to their lymph nodes, 97.9%  of those who received radiation were cancer-free five years later.  Of those who did not receive radiation, only 63.8% remained cancer-free.  Makes a mere six weeks of treatment seem worthwhile. 

The event food was almost too gorgeous to eat!

In other news, my business is starting to pick up again. I had the privilege of planning a high-end event for a client at the Rainier Club last week.  It was a blast.  Lots of Seattle celebrities whom I won’t mention here since it was a private event, but let’s just say one of them wears an eye patch and dabbles in glass.  If anyone is looking for help with events or marketing, let me know.  Business slowed down quite a bit during chemo and surgery, so now that I’m feeling great, I have capacity for new clients.

I’m also excited to present a show in Olympia!  Dances of Hope and Healing will take place on Sunday, June 28, 2015, 6 pm at the Kenneth J. Minnaert Center for the Arts on the South Puget Sound Community College Campus (2011 Mottman Rd SW, Olympia). Join me for a night of belly dance, flamenco, and the meditative sounds of crystal singing bowls   Proceeds benefit the Healing Garden for cancer patients at Providence St. Peter Hospital in Olympia. Tickets are available at olytix.org or by calling 360-753-8586.

Carter likes to use the bra stuffers
that people have given me as a "fat belly."
Disturbing.  But hysterical!

Overall, I’m adjusting okay to my body post-surgery.  I am working with a fantastic physical therapist who is helping me regain my range of motion and avoid lymphedema.  Sometimes I feel myself dipping into a bit of a depression since all of the treatments have taken such a toll physically and mentally.  I hate to even admit that I feel down since I should be happy that I’m now cancer-free.  But apparently, post-cancer depression isn’t all that uncommon. (Here's an article from a NY Times writer as an example). I think for me, some of the adrenalin of fighting cancer has worn off and now I’m faced with the reality that I look very different from what I looked like last August and my PR firm that was booming last year is barely squeaking by.  All of these things are temporary, so I’m trying to be patient and positive and do healthy things like exercise, hang out with friends, and cuddle my babies.  And, in the end, I am proud that I beat cancer.  Proud enough that I’m not interested in wearing prosthetics or a even a hat anymore.  The way I look, while sometimes shocking to me, is also a symbol of the victory my family and I achieved with the help of many, many amazing people.

Farewell, My Fabulous Friend

My friend and dance student, Nora, died yesterday after a long and brave battle with cancer.  I miss her already and it’s hard to believe that she didn’t beat cancer.  To say that Nora had a feisty spirit is an understatement.  My sassy friend with flame red (or sometimes hot pink) hair was a firecracker who didn’t mince words and went after exactly what she liked.  I’m just fortunate that she liked belly dancing and that brought her into my life.

The first time I met Nora, we were dancing in a basement.  I had been teaching for a couple of years at that point but due to a scheduling snafu with the studio I had rented, my small class suddenly didn’t have a home.  One of my students (and now dear friend) Melissa generously opened her basement so that we could continue to dance on Saturday mornings.  

Those classes were raucous and celebratory and into that mix walked Nora. She was wearing what I came to understand was a signature look.  She had carefully thought through her dancewear from head to toe and looked like she was ready for a photo shoot. On this particular day, her ensemble was an artful mix of neon yellow and neon green, boldly brilliant against her tan skin and shocking red hair.  She was no shrinking violet.

Belly Dance Spectacular 2013

For ten years, I had the privilege of teaching with Nora at my side. Our Saturday morning classes eventually found their way back into a studio, and Nora gravitated to the front of the class, usually on my right side.  She threw herself into belly dancing with every ounce of her being, each outfit more splendid than the last, and with a love of dance that radiated in her every move and every expression. Her sense of style, broad interest in music and unparalleled eye for color were the inspiration for several choreographies and troupe costumes.  Even in the last year or so, when Nora wasn’t well enough to come to class, her presence stayed with us.  The class held the space in the front, to my right, open for her.  Just in case.

Nora watches Atasha Manila with delight
at the 2013 Belly Dance Spectacular

We grew close over the years and would go to dance shows, just she and I. I used to joke that, as the teacher, I was mother duck to a whole flock of pretty ducklings. Nora for a time called me “Mama Duck” and would lean her head on my shoulder lovingly.  In more recent years, she would still lean her head on my shoulder, but she started calling me “Mom” even though she is a few years older than I am. It was our little joke and I would often hug her and say “there, there, little duckie.”  I liked being that person for her.  Despite her outward boldness, there was much about her that was private. I’m grateful that she let me in. 

I’m glad, too, that for a short time – before we were both swallowed up by the side effects of our treatments – we could commiserate together.  We compared hair loss and talked about wigs and how stupid all of this cancer business is. I was still sore and swollen from my mastectomy when I got word that she was in the hospital.  I stopped by to see her on Monday, as soon as I was able.  She was being moved to hospice care. And now she’s gone.

Nora and Anastasia after having makeup done
by the irrepressible Louie (a.k.a. Atasha Manila)

I want to focus on my memories of her, but it’s impossible not to think about our cancer journeys.  Less than two weeks ago, a few days after my breasts were removed, I was told my pathology report showed no living cancer cells.  The chemo worked, and after radiation and some additional chemotherapy, it is very likely that breast cancer won’t ever come back. Other than the two large scars across my chest, breast cancer could conceivably be a distant memory for me someday.  But why me and not Nora?  And do I dare believe in a life beyond cancer even though repeat invasions seem so indiscriminate and merciless?

I don’t understand everything that goes into freeing people from the grip of cancer, and I don’t think we can ever understand why Nora’s treatment wasn’t enough to win the fight. There are so many variables: the type of cancer, the health of the body invaded by cancer, the resources and support available. Like me, Nora was probably bombarded with information and difficult choices.  She had to put her faith in some form of treatment and then hope for the best, probably many times throughout the years of her fight.  If only the outcome could have been different.

I would end this post on an uplifting note except that it would have annoyed the bejesus out of Nora. Cancer sucks big time. I recently read a book in which the author conducted workshops for the doctors and nurses of cancer patients to talk about death and dying.  After a few weeks, many of them concluded that if given a choice, they would prefer to die from cancer.  In other words, it’s not such a bad way to go.  You can see death coming, unlike, say, if you are hit by a bus. You have a little time to put your affairs in order, say your goodbyes, and prepare emotionally and spiritually. 

That sounds fine in theory, but on the ground it feels awful.  Nora suffered for a long time.  Not just weeks, but years of her life were filled with doctor appointments, treatments and their horrific side effects, and the uncertainty that comes with cancer’s slow waltz with death.  Nora was too young and too full of life to leave like this. I miss her, her friends and fellow dancers miss her, her family misses her, and the world isn’t the same without her.  Damn cancer.  Don’t worry, Nora, I’m going to beat cancer up and down the street. I love you so much my little duckling, you glorious creature.  Come dance in my dreams whenever you want.

Nora in 2006

The Surgery Report

This is a quick post just to let everyone know that surgery went great and I’m resting and recovering well.  The best news is that the pathology report showed no living cancer cells in the tissues that were taken from my body.  That means that my body had a “total response” to chemo: the chemicals carefully chosen by my doctor annihilated the evil cancer cells and didn’t leave a single one standing.  That’s a huge weight off my chest.  (Gotta love mastectomy puns!)

Thank you for all of the kind messages and gifts!  I’m up and around this week and hoping to get caught up on email over the next few days.  I’m so grateful to my parents and my in-laws for helping out with the kids since I'm not supposed to lift over 10 lbs and both kids are well over that mark. My amazing husband has done the brunt of housework without complaint and has also made me feel beautiful despite the fact that I'm bald and boobless. Finally, a big thanks to my spectacular friend, Penny, who not only helped with the kids but also fed us better than we could have imagined. Here is a sampling of the foods she cooked for us while I convalesced last week:

Dinner 1

Meatballs delicately cooked sous vide

Pasta with spinach-almond pesto

Butter lettuce salad with green herb dressing

Dinner 2

Barley with red wine and mushrooms

Lamb chops with carmelized garlic sauce

Sautéed baby spinach

Dessert

Mango-lime shortcake with Greek yogurt, mango honey and pistachios

Woe is me. I have been suffering ever so. 

A few of the ingredients were left over from a "Modernist" dinner that Penny and some friends and I were cooking the night before my surgery.  Since I had to stop eating after a certain time, I was very grateful to enjoy the beautiful flavors post-surgery, and I am grateful to Penny for doing so much cooking.  I’m fairly certain that delicious food helps a person recover faster.

Boobless or Bust

Surgery is now just a couple of days away.  I feel ready, to the point where I just want to get it over with and begin healing.  It’s a little scary to think about how odd my body will look without breasts, but the outpouring support and love I have received has given me the strength and courage I need for this next step.

Farewell to Titsy…and to Big Mountain

A few posts ago I talked about having only Titsy, the left (cancerous) breast, removed.  It is still true that there is no real medical reason for removing both breasts.  However, after much deliberation and many conversations with my oncologist and surgeon, I have made the personal choice to have both breasts removed. 

I might have surgery on my mind,
but did this Fred Meyer cash register read
"Boob Void?!"

Here is my thinking: Big Mountain, the right breast, is perfectly healthy and therefore has the same potential for getting breast cancer as any, non-genetically predisposed breast.  There is a 1 in 8 chance a woman will get breast cancer in her lifetime, and I’ve heard slightly greater chances for those of us in the Northwest, more like 1 in 7.  So, while I would never recommend based on these statistics that all woman go around lopping off their breasts, in my case, I don’t want to go through this again.  I feel like my family and I are going through hell and back with treatment and if I can eliminate the chance of going through this again, I’m all for it.  If chances were more like 1 in 100, okay, maybe there’d be a reason to hang onto the healthy breast.  But 1 in 7 is just too much of a risk for me.  And, as my oncologist confirmed, there might be a slightly greater chance of getting breast cancer in the healthy breast just because we don’t really know what caused cancer in the left breast in the first place.  If it was some mysterious cancer-causing thing I ate or breathed or came in contact with over my lifetime, Big Mountain was there right alongside Titsy the whole time and had the same exposure. (P.S. The nicknames came about when breastfeeding my kids and trying to keep track of feedings in the midst of mind-numbing sleep-deprivation.)

I can’t emphasize enough what a personal choice this is.  Every breast cancer patient is unique: there is variability in the types and stages of cancer, bodies are different, life journeys are different.  In my case, I am done breastfeeding children.  Also, hauling around a giant DDD breast for about a year before it could be reduced sounded like a nightmare and a recipe for major back problems.  This way, I can decide if and when to undergo reconstruction.  Who knows, maybe it will feel so good to go running without having to wear two sports bras and an underwire that I’ll stay flat as pancake for the rest of my life?!  

Mastecto-Mix

As I head into surgery, I’ve been trying to come up with my playlist.  Yes, really.  I can’t take credit for the idea. My awesome friend, Erin, put together her own “Mastecto-Mix” before her surgery and her surgeon, whom we share in common, still remembers it years after.  I believe hers started with “The First Cut is the Deepest.”  I’m adding in the 1968 “You’ve Got to Have Boobs” by Ruth Wallis.  Nina Simone’s “Ain’t Got No, I Got Life” needs to be on the playlist, too.  Some friends have suggested that since I’ll no longer be a busty gal that I should highlight other assets and therefore should include songs like “Baby Got Back.”  I’m looking for inspiration, so if you’ve got ideas, send ‘em my way!

Warding Off Evil Spirits

The Great Veil Mountain

My wonderful belly dance community came out in full force to exorcise evil cancer spirits and pour love on me.  It was amazing.  Our “Tata to the Tatas” party was kindly hosted by Mirabai at a yoga studio in West Seattle and even included boob piñatas.  I lost count, but I think there were about fifty women there.  Excuse me, fifty fabulous women.  Truly.  From two of the grande dames of Seattle belly dance, Mish Mish and Zaphara, to many of the professionals and instructors, to my own dear students, we packed the place with glittery pink sweetness and strong, confident beauty.  Each woman danced and placed a veil on me and later offered affirmations, prayers and uplifting words.  The talented Antoinette of Magic Magpie Studio was there doing henna designs on the women, some reflecting Hildegard, the crab tattoo on my neck who is helping me fight cancer. The party was also intended as a Zaar, a ritual originating in north and east Africa to ward off evil spirits.  Mish Mish led us in drumming, clapping, chanting and swinging our heads about until I could feel the evil cancer spirits quivering in fear and my own spirit lifting.  I left feeling stronger than ever.

We also raised $300 for the Healing Garden for cancer patients at Providence St. Peter Hospital.  If you are interested in buying a t-shirt, here is the link for the current campaign.  I'm also planning a fundraising dance show in Olympia on June 28...stay tuned for more details!

Looking Ahead

It sounds like I’ll be laid flat for at least two weeks, with another 3-4 weeks to start feeling like my old self again.  Soon, probably early April, I will start radiation for 6 weeks, nearly every day.  The earliest I can consider reconstruction will be in December 2015 and then it will be over a year of surgeries before that process is completed.  Silicone and saline are not options for me because of radiation treatment: the best I can hope for are Frankenboobs constructed from my own flesh that are significantly smaller than my current situation. So, those who mention something about how lucky I am that I will get perky boobs might get a cross-eyed look from me.  Or might get punched.

Peace and Healing

I have been going to a yoga nidra class at Olympia’s Yoga Loft.  There is some gentle stretching, but mostly the class is a guided meditation.  I wasn’t sure what to expect, or what I would get out of it but I figured I’d just let the process wash over me and see what happened.  At the very worst, it would be nearly 90 minutes of peace and quiet which, with two little kids and loud Italian husband, are in short supply at my house.  Last week, as I drove away after the class, I thought about how nice it was to relax but there wasn’t much else to it.  That’s when I had an epiphany.  Through all of this cancer business, part of me has been feeling wounded.  I still feel like I’m an okay mom, an okay wife, I have great friends, and someday my business will build back up after I get through treatment.  I realized the part of me hurting the most right now is the belly dancer in me.  She is the one who likes to feel beautiful, to feel her hair fly around her shoulders as she moves, to feel energetic, sensuous and feminine. She’s losing so much through all of this.  For this reason, I am doubly grateful to my belly dance community for rallying around me and making me feel beautiful and cherished no matter what.

I chose to have Antoinette henna my head so that I can carry that belly dancer brand of love with me into the surgery room.  In 2013, Antoinette did a henna design on my belly when I was pregnant with Lovisa.  I love the idea that henna decorations are traveling with me through major life passages.  Here’s to the new life beyond.

My henna belly when I was pregnant
with Lovisa

My henna head, with sweet Lovisa looking on.

Joy Unplugged...Almost

Five months of chemotherapy treatments have finally come to an end!  I’m so glad to have made it through, and utterly grateful to the many people who held my hand and cared for my family along the way.  It’s great to have a break before having both breasts removed at the end of this month – more on that in a future blog entry.  For now, I just want to get healthy and spend lots of time cuddling my little kiddos.

I would say that I’m footloose and fancy-free, untethered as it were from the thin plastic lines that fed chemicals into the port in my chest.  However, I’m currently at Providence St. Peter Hospital (again) and have been plugged into an IV pump for going on 48 hours now.  To be honest, it’s cramping my style. Fortunately, everyone here at the hospital has been great and I’m feeling better than when I first came in with a fever on Friday morning.  Even the food service, Cascade Cuisine, has been beautifully cooperative this time. (You can read about my previous wheat toast adventures here.) Word on the streets is they’ll let me out today.  Fingers crossed!  So, since I’m on a short leash, I might as well catch up on my blog and tell the happy tale of finishing up chemo.

But first! If you haven’t already bought a T-shirt, they are still for sale! ORDER A T-SHIRT Proceeds go toward the Healing Garden that is being constructed for cancer patients here at St. Pete’s hospital. After being cooped up here for a few days, I can honestly say the need is dire.  As a cancer patient, I would give anything for a dedicated outdoor space on the third floor so I could take a walk, even if I had to drag the IV pump - my "dance partner" - with me. The T-shirt bears a cancer-fighting crab just like the one on my neck, fondly known as Hildegard (more about the crab tattoo here).  If you’d rather donate straight to St. Pete’s instead of ordering a T-shirt, try this link.

Final and Fabulous Chemo Date

Callie, my gorgeous and fierce chemo date.

My last chemo treatment – treatment #16 – was on January 15.  My date for the day was my saucy friend from grad school, Callie.  I’m so proud of her.  She just landed an awesome new job and I’m sure is rockin’ it.  It was so fun to catch up with her.  She’s also the perfect person to hang out with even when I’m not feeling the greatest.  I know with her, there's no judgement.  I could have completely tossed my cookies or broken down in tears and she wouldn't have flinched. She has worked with some of downtown Seattle’s most challenged homeless citizens and she has seen firsthand both how strong and how fragile humans can be. Through it all, she has held onto her compassion as well as her wise and honest take on life.  Let's go on a tangent, shall we?  Once, many years ago, I went to a showing of Wim Wenders’ Wings of Desire where Wim himself introduced the film by talking about his concept of the angels in the movie. He said that angels witness us as we are: our good intentions, our victories, and our countless flaws and failures.  And yet, despite – or maybe because of – our imperfections, he imagined that angels must still care for us and he wanted to convey their unending compassion in his movie. Callie is like a Wim Wenders angel.

Callie and I were joined by a wonderful parade of friends throughout the chemo date.  My Montana uncle stopped by and regaled us with tales of family gossip and bear attacks (a.k.a. “Montana facelifts”).  My uncle embodies the Wild West – he’s true Montana through and through.  He’s a rough-around-the edges tough guy who loves the mountains, Bozeman summers, and dry snow.  He also has a sweet, sensitive side whether he'd admit or not: he has been checking in with me nearly every week since I started chemo. And, despite complaining about the traffic and dirtiness of downtown Seattle, he was on his way to see Itzhak Perlman at the Benaroya.  We all agreed my uncle is a riddle wrapped in a mystery inside an enigma.

My friend Tina and I.  And yes, that might be beer behind us.

My dear friend, Tina, stopped by, too.  Tina and I have known each other more or less since the first grade.  Or maybe second.  I can never get it straight.  Regardless, she has put up with me for a very long time.  I adore Tina and she can poke fun at me like nobody else.  Keeps me humble, at least for a few minutes.  She brought a belated birthday present of very cool beer glasses and other fun tchotchkes.  I of course, had not yet gotten around to sending her Christmas present.  She has always been more thoughtful than me. Anyway, it made me so happy to see her and it was such a nice surprise!  I vowed to find some time before surgery to hang out, and we did!  More on that later.

Also joining us was the lovely and talented Emily. She started as my dance student about 7 years ago and it has been wonderful to watch her grow and become a mom.  I also consider her the Lena to my Ray Donavan, except that I am in no way involved in criminal activity or large sums of money.  I’m more like the NPR version of Ray Donavan, if Ray were to work for small municipalities instead of Hollywood stars.  Okay, it's a total stretch but what I'm trying to say is that I can depend on Emily for anything.  She's a smart cookie, a great problem-solver and a self-starter. And if you don’t know what I'm talking about, you need to get Showtime.  

Erin and Laurie make me smile. A lot.

Rounding out this fabulous chemo par-tay were my dear friends Laurie and Erin.  I hope I am not disclosing too much to say that Erin has been through circumstances similar to what I am going through and the two of them have been invaluable in their support, encouragement, and advice for Josh and me as we go through this together as a couple.  I love them so much.  They completely light up a room when they walk in and my jaw aches from smiling and laughing so much when they are around.  Come to think of it, I have a lot of friends like that.  Man, I LUCKED OUT!  Well, Laurie and Erin are a special brand of lightness and fun and I was very grateful to see them.

My new BFF, the owner of the Beer Authority.
That place is AMAHZING!

Since the last chemo treatment, I had my usual dip into the stormy seas of side effects.  But I emerged really quickly and by day 8, I was feeling pretty good. Over the past few days, I went on a mini beer tour with Tina through Lake City and the Greenwood neighborhood - including a stop by the Beer Authority, fixed a big Italian dinner for my mother-in-law’s birthday, started working out at the gym again, and I even got to see my friend Penny for dinner and a flamenco class.  Then, the fever.  Chemo had to grab me by the ankles and pull me under one last time.  I can’t wait to get out of the hospital and take a shower, maybe go for a long run/walk around Capitol Lake. Take THAT, chemo!  Oh yeah, and I think there is some kind of important sporting competition happening today?  Something involving large men and a funny-shaped ball, perchance?  GO SEAHAWKS!

My niece, Ivy, and I showing off
our glowing noggins with her lovely mom,
Erica, looking on.