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.

Sass, Savvy and Sweet Salvation Thanks to Sadie Marquardt

Last week was a rough chemo week, but it wasn’t anything a few good shimmies couldn’t fix.  The usual chemo side effects crept in around Sunday night and then laid me flat by Tuesday.  However, after spending way too many hours in bed sleeping or reading Deep Down Dark: The Untold Stories of 33 Men Buried in a Chilean Mine, and the Miracle That Set Them Free, the effects of chemo started subsiding. By Friday, I was feeling perky enough to head to downtown Seattle for a dance workshop with the amazing Sadie, and the weekend just kept getting better from there.

I love going to belly dance workshops.  It’s what feeds dance creativity, and I believe it’s important to support our dance community whenever we can.  I would have attended the entire weekend with Sadie had life not been so interruptive lately.  As it was, I was able to attend the Friday workshop and half of the Saturday workshop, and I’m absolutely grateful that I did.

Hailing from Denver, CO, Sadie is a lovely dancer and a beautiful person.  I must confess I didn’t know that much about her before attending her workshop except that one of her dances seems to be ubiquitous on YouTube.  Or, at least, ubiquitous for those of us who use YouTube to relentlessly search belly dance videos.  That video alone has had nearly 29 million views.  Imagine if every living soul in Ireland, Norway, Switzerland and Greece had watched you belly dance.  That’s how many people have seen that video alone.

The Friday class focused on “Creating Your Signature Dance Set.”  As far as restaurant dancing and putting together a set, I’d probably put myself in the “veteran” category.  I was fortunate to dance in lots of Seattle area restaurants and clubs for a period of about seven years, often performing 6 or 7 sets a week.  It adds up (over 2,000 sets!) so I sort of had my signature set down after a while.  However, I wanted to get Sadie’s insight to see if there were any great nuggets of wisdom to pass along to my own students.

Sadie is one hot tamale!
And just as beautiful as a person!

Sadie was smart and honest about what it takes to succeed as a belly dancer.  It was also clear how much she honors the dance and its origins.  She gave us a chance to practice stage presence and gave us some fun tricks, especially a tasty little veil wrap. 

I wasn’t able to swing childcare for Saturday morning and was also being careful about my energy level, so I slipped into only the second half of the Saturday workshop which focused on “Drum Solo Secrets.”  This is where Sadie’s technical abilities really shined.  She kicked my butt for sure, and maybe every butt in that room.  I was especially impressed with her patience to see a move through.  There was a part of the workshop where the collective frustration of the attendees was palpable.  We weren’t grasping a layering technique and the mechanics of it.  If I had been teaching, I might have crumbled and simply moved onto a different technique.  But Sadie stuck with it, and continued to explain and demonstrate the move in different ways.  Eventually understanding seemed to click into place around the room.  She didn’t back off, and in doing so, we learned a tricky technique and the value of tenacity.

The weekend with Sadie couldn’t have come at a better time. After a rough week, it felt good to be in the presence of such a positive and inclusive instructor.  It was also great to be surrounded by friends. I attended Friday’s workshop with one of my best dance buds, the lovely and talented Mirabai, and at the workshop were many sweet and familiar faces.  There's nothing like a bunch of hugs from sparkly, fabulous women to make a person feel loved and alive.

It helped, too, to hear Sadie's thoughts on what it takes to be a great restaurant dancer.  She talked about how restaurant gigs force a dancer to be extremely versatile, intuitive and clever, while being thick-skinned enough to deal with sharing attention with distractions like flaming cheese.  I had always beaten myself up for not being a great theater dancer.  In the two dozen or so times that I’ve been able to dance on a theatrical stage, it hasn’t always gone well.  For example, I fell off of a dumbek in front of 800 people at the Bagley Wright Theatre.  Not cool.  But restaurant gigs, well, I had those down.  Lots of practice helped, of course, but after several years of gigging on a regular basis, I feel like I wasn’t half bad at reading people and situations and adjusting my performance on the fly.  I’d still like to nail a stage performance someday, but after this weekend, I let go of feeling like a failure because I was primarily a restaurant dancer.  That’s big!

The dance workshop was also healing because cancer treatment had recently forced me to give up a part of my dance life that was precious to me.  After 12 years of teaching belly dance, last week I announced that I would no longer be teaching.  I love my students and it broke my heart to let go of my classes, but with chemo, and then surgery, then radiation, then reconstruction, I just couldn’t see how I could continue.  I have taught through getting a Master’s degree, two pregnancies and a move to Olympia.  It was cancer treatment that finally forced a difficult decision. 

As I told my students, I have to believe that something good will come of this. Already after dancing this weekend, I see hope in the future.  I’m determined to become a stronger dancer after this, even if I have to dance with scars. Maybe someday I’ll start teaching in Olympia. And for my students, I knew another teacher had been arranged for them, but I didn’t know who she was.  The beautiful coincidence is that she happened to be at the workshop with Sadie, and one of my dance friends was able to introduce us.  The new teacher, Soraya, has a long dance history and is a lovely, lovely person.  I’m so happy for my students and I know they are in good hands.   

At Zaina in Seattle's Pioneer Square in 2005, and,
no, I'm not balancing a speaker on my head.
That would have cost extra.

I am so grateful to Sadie, to the amazing Roxy for hosting the workshops, and to my many wonderful sisters in dance.  As I head into my last treatment of chemo and with surgery just a few weeks away, I know this dance, this community, will continue to be a source of strength.  I also feel a renewed commitment to stick with it. Twenty years of belly dance isn’t enough – I want 20, 40, maybe even 60 more.   There are so many reasons that I love being a belly dancer.  Here’s one:

My four-year-old son, Carter, is obsessed with Princess Elsa from Disney’s Frozen.  I’ve caught him having conversations with posters of her and we’ve played “Let It Go” oh, about fifty million times in the car.  I asked him, “Do you like Princess Elsa?” “Yes, I like her a lot.”  “Do you think she’s pretty?” “Yes, but she doesn’t belly dance.”  So, this heiress to the throne of Arendelle with the power to make whole palaces of ice and plunge her kingdom into eternal winter falls short of amazing because she doesn’t belly dance. Sorry, Elsa, guess you’re not as cool as Carter’s mom.

For more information about Sadie, please visit her website.

If you’d like to buy a T-shirt to support the construction of a Healing Garden at St. Pete’s Hospital, follow this link: https://www.booster.com/joyfullycrabby1.  My very kind father-in-law designed the T-shirt in my honor and it includes the crab that is now tattooed on the back of my neck to help me fight cancer, known fondly as “Hildegard.”  Thank you for your support!

Lost at Sea Due to AC

I’m now in week 17 of 20 weeks of treatment.  Or, put an even better way, I just had my second to last chemo infusion yesterday.  HOORAY! I have finished 12 weekly treatments of a Taxol cocktail and now 3 every-other-week treatments of AC, with only one more to go.  I’m so excited to be done with chemo, even with surgery, radiation and reconstruction ahead.  The AC regimen has totally kicked my butt, so I’m looking forward to finishing it and getting back to my old self.

The best way I can describe how it feels is being lost at sea and hanging onto a piece of driftwood.  I get the AC infusion (yesterday it took about 4.5 hours) along with a steroid, so I feel sort of okay for a few days.  Maybe a little disoriented and hyper – like I’ve just been thrown from a ship but I’m buzzed to be alive.  Then, after a couple of days, when the steroid wears off, I enter very dark, very stormy waters.  I’m nauseated, I hurt, I can’t think, and I’m barely able to get out of bed.  I literally have dreams of drowning.  There are moments here and there when I come up for air, but mostly I’m plunged into chemo hell.  After a few days, the storm subsides and I’m left exhausted, just drifting.  It’s at this point that my white blood cells are dipping to their lowest and I have to hope that I don’t catch anything since my system is unable to fight infection.  Usually during this time I start getting awful sores in my mouth and throat. Around day 10, I start coming back to normal.  It’s like the sun comes out and a boat rescues me and for three or four days, I try not to be too dazed because, well, I still have work to do.  So, I madly try to cram all of my writing for my consulting business into the days when my brain is working.  Then, I go back to Seattle Cancer Care Alliance, and they (very kindly) throw me off the boat and into the AC sea again.

Only one more treatment left.  January 15. I just have to get through the side effects of the treatment that I received yesterday, then the next treatment, and I figure by the end of January, I can start feeling “normal” again, at least until surgery. Happy day!  Thanks to all of the wonderful friends and family who have been helping us get through this patch and others who are signed up to help us in the coming weeks.  We have the kids home right now instead of daycare to reduce the amount of new germs coming into the house. That has meant extra help since I’m stuck in bed for about a week at a time now.

To name a few of the people who have stepped in selflessly and with an abundance of love and support: my mom, my in-laws Sharon & Bob, Aunt Catina, Uncle Dave & Aunt Mary, my irrepressible friend Penny, the lovely Emily, sweet Juliana and more to come.  Thanks also to my cousins Jeb & Kathy and to Taiece for visiting me during chemo. Thanks also to everyone for the kind cards, emails, texts and PMs.  I do my best to get back to you, but, well, if I’m getting swallowed by waves of chemo, I hope you can understand.  And finally, the kids and I would be truly lost without Josh.  Thank you for being our rock.  I love you.