On the Home Stretch

As of today, I only have four more radiation treatments left.  I can’t believe it. This means that nearly a year of cancer treatment is finally coming to an end.  When I finish next Tuesday, I will have endured five months of chemo, a double mastectomy and 34 treatments of radiation.  I’ll still have a few follow-up appointments and a small dose of chemo every three weeks, but for all intents and purposes, I will be done with treatment and cancer-free.

Radiation hasn’t been nearly the ordeal that chemo was.  The appointments are very quick – only about 20 minutes on average – and I’ve had almost no side effects.  My skin is definitely pink and tender in the radiation fields, but I’m not experiencing any of the fatigue that I’ve heard others experience.  Of course, exercising 3-4 hours a day might be helping keep my energy up, too.  I might be going a little overboard, but it feels so good to MOVE after being nearly dormant for so many months.

In fact the only really painful part of the radiation experience so far isn't directly because of radiation.  I was getting a MUGA test where they take out some of my blood, make it radioactive and then shoot it back through my body and take pictures of my heart to see how it’s functioning.  (MUGA in this case, my dear friends in local government, stands for something to do with the heart and not for “Municipal Urban Growth Area.”  And yes, I am well aware that I’m a nerd.)  For the test, the tech attached sensors to my torso, including one on my radiation field.  I didn’t think much of it until she ripped the sensors off and a one and half inch piece of my radiated skin came with it.  It was the opposite of fun.  Even a week later, I still have a gaping wound despite using specially prescribed lotion to heal and protect it.  So annoying!  I would be mad, except that it was an honest mistake and I have heard that they have since issued a safety bulletin to MUGA techs so this won’t happen to anyone in the future.  

Other than missing some skin, the only other downside to radiation has been the driving back and forth from Olympia to Seattle.  Dancing everyday has totally made up for this, however, and I am so grateful to my husband and family for supporting me in this endeavor.  I’ll write more about my 7-week dance odessey in the next blog post…stay tuned!  But for now, I’ll just say that all of this exercise and the deep sense of community that I have experienced in each dance class have completely lifted my spirits.  I feel good, and that makes it so much easier to say, “Yeah, I’m missing my boobs and long hair, but heck, I’m alive.”

I have SO much to look forward to in the coming days: We’re getting together with friends on my last day of radiation, after my flamenco class in West Seattle.  Then, on June 20, I am honored to be the feature dancer at Enat Ethiopian Restaurant (11546 15th Avenue NE / Seattle, WA) along with my friends/students Raiyah and Sakura.  Just eight days after that, on June 28, is the show I’m presenting in Olympia to raise money for the Healing Garden for cancer patients at Providence St. Peter Hospital!  Dances of Hope and Healing is coming together beautifully - all of the performers, the theater and the hospital have been a dream to work with.  More information about the show and tickets are available here. Thurston Talk was kind enough to do an article about the show, too.

So much to look forward to in the coming days...and the rest of my life.  Thank you to my doctors, to Seattle Cancer Care Alliance, to Providence St. Peter Hospital and to all of my friends and family for giving me another chance at this amazing life.

The Boobless Life

If you didn’t guess from the title, this entry is the very definition of TMI.  If you are, say, a male relative or a former coworker, you might want to skip this blog entry in the interest of staying blissfully ignorant of such private matters.  Consider yourself warned.

For any woman curious about what it’s like to suddenly be flat-chested after many years of being the opposite of flat-chested, especially anyone facing a mastectomy, I thought it might be useful to share my story.  It’s now been nearly three months since my bilateral mastectomy.  The pain is gone, most of my flexibility is back, and I’ve been working out like a fiend to try to undo the damage from months of chemotherapy and surgery recovery.  It’s just me and my new body.  I haven’t decided if I want to go through reconstruction at the end of the year, or at all.  But there’s no deadline.  Here are some of the pros and cons of living the boobless life:

PRO: I’m very glad that I had both breasts removed.  Absolutely no regrets.  As difficult as this has been, I can’t imagine how hard it would have been had I kept the healthy, larger breast. I would be fighting with my clothes, lopsided, uncomfortable, and feeling pressure to wear a prosthesis.  This way, I don’t have to do any reconstruction if I don’t want to.  This could be it! Radiation has given me another reason to be grateful that I went boob-free: I would have had to reveal my one giant boob to a rotating team of radiation techs on a daily basis for seven straight weeks.  No thank you. 

CON: I’m not actually as flat-chested as I expected.  The surgeon left the natural fat pads along the sides (near my arm pits) and there is also some flesh left near where my cleavage used to be. These weird lumps and bumps on my front and sides make it awkward to wear tight T-shirts. I’m hoping some of this goes away through exercise and a healthier diet, but I suspect I’m stuck with ‘em unless I have some kind of surgery.

PRO: Exercise is way more comfortable, especially when it comes to jogging and bhangra.  Anything that involved bouncing previously required a very complex system of exercise bras and heavy duty underwires, plus constant adjustment.  I feel so liberated!

CON: In some exercise classes, particularly Barre, I feel a bit like a freak.  So many sweet young things with lovely figures and pretty hair.  I try to smile a lot so that I don’t seem scary. I have also resisted throttling the women in the class who are my age, wear probably a size 4, and are complaining about their “side boob fat.” 

PRO: Certain clothes like button down shirts and tight-fitting jackets fit so easily now!  No gapping! 

CON: I need a new wardrobe. Many of my old clothes look odd and my outfits don’t balance very well.

PRO: I need a new wardrobe. heh heh

PRO: I don’t need to wear a bra. Period!  I can get dressed faster and hopping into bed at the end of the day is a snap.  No worrying about if I have the right color bra under certain shirts or if I need a smooth bra vs. lace, etc. Plus, no underwire chafing!

CON: Every once in a while, I miss wearing bras. They can be so pretty! But probably less expensive this way.  I was becoming what one might call a "bra hoarder."

PRO: Somehow being flat-chested makes me feel more sophisticated.  This is probably a reflection of the many conflicting pressures that society continues to place on women in order to keep them subordinate to men and perpetuate body image dissatisfaction, therefore driving fashion consumption.  But hey, if you’ve lost your lemons, ya gotta appreciate the lemonade life serves you.  Or something like that.

CON: Even though there are many, many days when I feel strong and powerful for beating cancer, there probably just as many days that I feel unsexy.  Sexless actually. I’ve even had a couple of men make cruel comments under their breath when they’ve passed by me.  It was upsetting at first, and then I realized they are likely ignorant players in the aforementioned conflicting societal pressures, probably stupid, and definitely have small penises.

PRO: I can hold the people I love very, very close now. I can give big bear hugs to friends and family.  My husband can really wrap his arms around my back and pull me in close to his chest. My son and daughter cuddle right up to me and I can feel my heart beating against their little warm bodies.

CON: There is no downside to this.

Journey Through Egypt: A MUST for Belly Dancers

I have been wanting to write this entry for a while.  Several weeks have passed since taking Sahra Saeeda’s Journey Through Egypt 1 program in Seattle and it is still blowing my mind.  Radiation treatment and adjustment to life post-cancer have taken up a bit of time, so I hope I can be forgiven for being so late in posting this.  But if you are a belly dancer, please read on. I kid you not: this is life-changing stuff.

Mirabai, Sahra and I at the workshop

To begin with, it might be helpful to understand where I’m coming from.  I started belly dancing in the early 1990’s.  I learned from a spectacular Greek teacher, Zaphara, and then expanded my training to learn from tons of teachers around the U.S., Canada, Australia and Egypt including a protégé of Bobby Farah (Maleeha) as well as taking workshops with Mahmoud Reda every chance I got.  I have briefly studied under folkloric experts such as Mish Mish and Helene Eriksen. I love the many forms belly dance embodies and tried to honor it by getting little nibbles of true Egyptian culture whenever possible.  Sahra’s Journey Through Egypt was more than a nibble.  It was a lifetime of nourishment that I have been looking for and I can’t wait to get more.

Sahra’s method of breaking down Egyptian dance into form and region made 20 years of belly dancing suddenly make sense.  I feel a bit like I have been groping in the dark, trying to understand Egyptian dance through bits and pieces:  a little Saidi here, some Ghawazee there, a base knowledge of Little Egypt, familiarity with modern Egyptian greats like Dina or Fifi Abdo.  Basking in Sahra’s presence for 20 hours was like suddenly turning the lights on.

The gorgeous Shining modeling
one of Sahra's folkloric costumes

To begin with, her method of breaking down regional dance forms into “homestyle,” “local professionals,” “regional government-sponsored,” “national troupes,” and “stage professionals” kicked all of the “what’s authentic/what isn’t authentic” talk to the curb.  It gave a whole new vocabulary to approaching authenticity.  A dance performed casually at home is going to be different from the way it is interpreted intellectually for stage and different yet from the way it might receive a nod from dancers performing in grand Egyptian hotels. All of these forms are legitimately artistic in their own way.  It is up to the smart, knowledgeable dancer to understand dance origins and make choices about how to weave various forms into a performance.

Another highlight of the three-day course was learning just how integral dance is in Egyptian life.  It’s difficult to make a comparison to the U.S.  Through the Journey Through Egypt course, it became clear that dance is (or at least, has been for many centuries) a part of daily life in Egypt.  It is how people celebrate weddings, it’s how housewives shake the blues, it’s how a community grieves.  Since the last of the European-backed kings left Egypt in the 1950’s, the Egyptian government embarked on a concerted effort to preserve and promote regional Egyptian dances by supporting two national dance companies as well as creating local government-sponsored dance programs.  There simply is no parallel for the way dance is woven into Egyptian culture to how we function in American culture. No wonder my understanding has been so fuzzy all of these years.

Classic Sahra from way back when!

On top of everything, Sahra is an amazing teacher.  Every question we asked led us to another charming story of her experiences in Egypt or with Mahmoud Reda.  She was endlessly generous with her knowledge and openly supportive of others who want to do research into Egyptian dance.  More than that, she bared her heart to us.  Though apologetic and embarrassed for her periodic tears, Sahra’s display of emotion for the dance that she loves – that we all love – was just further proof that she was speaking directly from the heart.

Thank you, Sahra. Thank you to the beautiful team of Kiteria and Maila for hosting the workshop. And thank you also to Roxy for hostingSahra next year.  I’ll be there for JtE2 with bells on and am dreaming of JtE3. I am humbled beyond belief with how much more there is to learn.

Looks like I might have a buddy to join me on future Egyptian adventures...

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.