Catching Up...Finally!

It’s been a few months since I last posted!  In part, I've been so relieved to be done with the bulk of treatment that it has been nice to take a break from regular updates.  I’ve been playing with my kiddos and very unplugged all summer which is just what I needed after this whole cancer ordeal.  Then, there’s also the fact that I’m not really, truly done with treatment. That’s made it hard to post a big splashy, “I’m done!” I’ve been getting Hercerptin infusions every three weeks, plus ongoing tests and follow up appointments.  The infusions are winding down, so I can see the light at the end of the tunnel.  I think when I have my port removed I'll finally start feeling more like a regular person again and less like being a patient is a major part of my identity.

The other reason I’ve taken a break from writing is a bit more difficult to explain.  I have wanted to keep this blog fairly positive, but also honest in case it's helpful to anyone else going through breast cancer treatment.  So, if I’m being honest, I need to admit that I’ve been in somewhat of a depression since June.  I’m coming out of it now, so I can write about it. But after so many had rallied around me, so many had celebrated my last day of radiation, so many had congratulated me and assumed it was time to move on, I was afraid of sounding ungrateful.  Even though I know post-cancer depression is not uncommon, I was embarrassed that I couldn't rally.  I couldn’t imagine saying to my friends, “Yes, I know you moved heaven and earth to rally around me for this past year, and I know I’m alive and healthy and all, but now I’m in the dumps and I need more support.”  So, I kept it mostly among my immediate family and those very close to me.  And, eventually, a counselor.

I had started to dip into this depression back in March. I was temporarily lifted up by the seven-week dance odyssey that coincided with radiation.   All of the samba, flamenco, hip hop, bollywood and bhangra was good for the soul. I was floating along with lots of help with the kids while I was driving back and forth to Seattle Cancer Care Alliance for the daily radiation treatments. I had the Dances of Hope and Healing Show to plan and look forward to as well, so really, things were looking up in May and June. 

Then, radiation ended. The Dances of Hope and Healing show happened (beautifully, I might add – everyone involved was truly amazing – and we raised over $1000).  I kept up with flamenco, but all of the other dancing stopped. Yes, I was healthy and in many ways stronger than I had been in a long time, but my body still looked terrible to me.  The damage from months of chemo and surgery were going to take longer than a few weeks to fix.  My hair is years from looking like it did before. And boobs don’t just grow back.  That, and the mental effects of chemo were lingering, leaving me foggy-headed and feeling stupid.  I struggled to find my vocabulary, I couldn’t make connections, I couldn’t think creatively: all skills required of a communications consultant.  I had to give up my work.  Suddenly I was full-time mom to two little kids who were intent on testing boundaries. Not that being a full-time mom is a bad thing, it’s just not the career/parenthood balance that I had hoped and worked for.  I also had a lot to process after spending a year focused mainly only on survival.  All of this left me sad, angry, tired and, well, not feeling much like blogging.

Josh and I at the Making Strides Against Breast Cancer
Kickoff Breakfast in August

Speaking at the kickoff breakfast for Making Strides Against Breast Cancer in August gave me the foothold I needed to start the climb to recovery. Josh and I had been connected to Making Strides South Sound through a friend of ours who recommended us.  We immediately accepted the invitation to speak assuming we were but one speech among many.  The morning of the event, as we took our seats at the Tacoma Convention Center, we were informed that we were later in the program, just before the "ask."  In other words, keynote position.  Scanning the room and realizing we were about to tell our very personal story to a crowd of about 300 people, I broke out into a sweat.

It turned out to be the best thing we could have done.  Josh and I both cried as we shared our past year battling cancer.  The audience cried with us.  I mean, they really cried. At the end, they gave us a standing ovation.  It was the validation I needed to begin moving on with my life.  Every breast cancer survivor should have a chance to tell their story to 300 people who empathize with their struggles and celebrate their courage.  Seeing everyone reach for their wallets and donate generously after our speech also gave me hope that some good could come out of a scary and difficult year.

The opening event for the Healing Garden

And good can come indeed out of a tough time: the Healing Garden opened in September.  Between the T-shirt campaign that my dear father-in-law started, the money raised at the Ta-ta to the Tatas party that my sweet friend Mirabai hosted, and the Dances of Hope and Healing show, we raised around $3000 for the Healing Garden at Providence St. Peter Hospital.  The hospital also reported that all of the publicity surrounding the show helped sell all of the naming rights in the garden. Josh and I attended the garden opening and we were kindly honored for our efforts, but really all of the gratitude goes to our friends and family.  The garden is a beautiful, peaceful space that will provide solace for cancer patients for years to come.

Dancing has helped improve my mood, too.  As someone who has danced fairly consistently for the last 20 years, it shouldn’t have been a surprise how intricately it is tied into my well-being.  But, the annoying cycle of depression is that you don’t have the energy or will to do the very things that will make you happy.  Getting my dance company back together has been an amazing boost and I’m so glad to get to see my beautiful friends again on a regular basis.  In a wonderful meeting of two worlds, we have been asked to perform at the beginning of the Making Strides walk this Saturday, October 10.  We walked last year with pink jingly coin belts and now, this year, we’ll get to dance, too!  If you’re headed to Tacoma to do the walk, come early (9:15 am) if you want to see us!

It's also been useful to learn more about brain biology and how chemo can alter the structure of brain cells to the point of making depression almost inevitable.  My counselor drew a diagram showing how the flow of good-feeling serotonin can be completely disrupted by the damage that chemo does to cells. My brain needed to heal.  And it is healing.  The fog is finally lifting, I’m feeling much more clear-headed and able to write again.  As my brain repairs itself and serotonin is going where it's supposed to, the depression is quickly dissipating.

Pulling myself out of this funk has required firing on all cylinders. I’m exercising, working on projects, going to counseling, hanging out with new and old friends, dancing, and spending lots of time snuggling with my kids and loving my husband. Fortunately, all of this effort is paying off and I'm definitely feeling better about things. Life isn’t perfect, but I don’t think it’s supposed to be, or, frankly, what that would even look like.  How uninteresting life would be if there weren’t challenges, how lonely it would be if we didn’t need to rely on each other now and then, and how easy it would be to take life for granted if we weren’t constantly reminded death follows us more closely than our own shadows.

Thank you for your ongoing support and thanks for your patience with these ups and downs.  Looking forward to more up!

Amirat Dance Company - photo by Todd Hobert Photography

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...