Wednesday, December 10, 2014

Cancer Update Potpourri

I’m still working on “Catching Up with Chemo Part Three: Europe” but thought I should post a few of the recent developments:

Tests: I just went through another round of tests and things are looking good: the tumors continue to shrink so the chemo is working!  There’s also good news that my heart is still functioning well, which is sometimes a problem with chemo drugs.  In fact, my heart somehow got stronger from when we first tested it before starting chemo.  Josh calls me a “super villain” because the crazy chemicals actually made me stronger.  If I keep this up, I’ll be unstoppable!

Chemo: I started the new chemo regimen known as “AC” last week.  I’m not going to lie, it totally sucks. I was doing okay over the weekend while I had steroids in my system, but then things took a turn for the worse.  It’s hard to describe, but basically I feel like I’ve been hit by a truck.  And on the verge of throwing up all the time. And really fuzzy-headed.  Last night I woke up covered in blood and was relieved that it was only my nose.  To all of the very sweet people who have been sending me nice messages, thank you.  They've been keeping me from dropping into a serious funk. I hope you will forgive me if I don’t get back to you right away.  I’m not trying to be a jerk, just feeling like I can only do the bare minimum some days.  Three more treatments of AC over the course of the next 6 weeks, then I'm done with chemo! Yay!

Mastectomy: Surgery has been scheduled for late February.  Here are some answers to some of the common questions that I’ve been getting…

Q: If the tumors shrink enough, can you have a lumpectomy instead of a mastectomy?
A: Despite some earlier hopefulness, it turns out that in my case, no.  The tumors were big and affected a large portion of the tissue. Since they have to remove all of the affected tissue, it would not leave very much of the breast. So, my left breast will be removed entirely.

Q: Why don’t you have both breasts removed?
A: When I was first diagnosed, I was ready to jump right in and have both boobs lopped off.  Get rid of these ticking timebags, I say!  That was before I met with an oncologist.  And a surgeon. And a radiation oncologist. And a genetic counselor. And a plastic surgeon.  Since I don’t have a genetic predisposition for breast cancer, there’s no medical reason for having the right (healthy) breast removed.

Reconstruction: I met with the plastic surgeon at UW Medical last week and liked her instantly. She’s beautiful and listened to me and I think we have a good plan.  Because I will be undergoing radiation, I can’t have a saline or silcone implant (failure rates are really high after radiation).  We’ll remove tissue from my belly. This will leave a 10” scar across my abdomen, about an inch under my belly button. I’m going to have to get creative with belly dance costumes!  It also means that, because of the time between mastectomy and reconstruction, I will be lugging around one boob for about 9 months of 2015.  I’m calling it the Year of Big Mountain.  I thought I was doing fairly well after looking at the surgeon’s portfolio of reconstructed breasts. Just a few scars, no big deal, right?  But then I managed to crunch my car in the UW Medical parking garage.  And also forgot to pay the cashier so I caused a traffic jam when I tried to leave the garage.  Apparently I was a bit distracted.

40th Birthday Celebration: Many of you have probably already guessed, but we are cancelling my 40th birthday celebration at the end of this month.  We had a great venue and a caterer lined up, but all of that was before this darn cancer thing happened.  I just don’t have the time or energy to put together a party this year.  We’ll plan a celebration someday in the future, maybe after I kick cancer’s butt up and down the street.


Life is Precious: As if we need more proof that cancer is horrible, we lost a friend to cancer recently.  Our friend, Bob, had been fighting for a couple of years and things took an unexpected turn.  On November 29th, I received a call that he only had a few days to live.  By the next morning, he was gone.  My heart breaks for his wife (and my dear friend and dance student), Lani.  Friends for many years, they were married a couple of years ago in Hawaii.  A few of us from the troupe went and celebrated with them as they pledged their commitment beneath swaying palm trees. My husband, Josh is ordained through the Church of Life (that's another story) and he officiated their wedding.  We felt truly honored to be part of their lives. They were so happy together, and they truly loved each other.  They should have grown old together.  For Bob, for Lani, for my husband and children, for my parents, my friends…I cannot lose.  Cancer has taken too much already, I won’t let it take me, too.  

Thank you to everyone for your love and support.


Saturday, December 6, 2014

Catching Up with Chemo Part Two: Harborview

This blog entry is one of the tougher ones I’ve written.  I’ve tried to keep most of the entries fairly upbeat and truthfully, breast cancer has given me many amazing moments and wonderful opportunities to connect with friends and family, far more than I could have expected.  But if I’m being really honest, it can also be freakin’ hard. 

The story I’m about to tell is about the challenges and stresses of dealing with breast cancer.  It’s deeply personal.  If you’d prefer to read the more uplifting blog entries, please skip this one and read the past entries and the ones to come.  The reason I am posting raw personal details publicly is this: since my diagnosis, I’ve stumbled on several breast cancer blogs that have been immensely helpful.  They’ve made me feel like I’m not alone in this journey, and that I will survive.  However, there are some breast cancer blogs that are all roses and sunshine all the time.  They make me smile a bit, and then I want to punch the writers in the face.  I’m sorry, I don’t care how strong of a person you are, breast cancer sucks.  It is the ones who have had the courage to candidly tell some tales of woe and redemption that have been the most helpful to me.  So, cancer sisters, this one’s for you…

On a mid-October Monday, I checked myself into Harborview Emergency.  For those not familiar with Harborview, it’s probably one of the busier, more frequented emergency rooms in Seattle.  Or, at least, one of the most commonly known hospitals for serious health emergencies.  We’re talking all kinds of crazy trauma, drug overdoses, physical and mental illness, blood, guts and gore. The S gets real in that emergency room.  How I ended up there likely starts with my cancer diagnosis in July, but primarily stems from what had been happening since starting chemo in late August.

I have mostly been lucky with the chemo drugs: barely any nausea or intestinal problems, just a little fatigue and numbness in my toes, a rash here and there.  The main problem since the beginning, however, has been lack of sleep.  The chemo drugs keep me in a weird state of tiredness without sleepiness.  Without some other type of drug to knock me out, I lay in bed, floating above sleep.  Anxiety over cancer, work, family, etc. probably doesn’t help.

On top of it, I caught a cold early in my treatment and it refused to go away.  For over 40 days, I was stuffy and had an obnoxious cough and heavy lungs.  Compounded with lack of sleep, it seemed like the cold would never leave.  Most annoying was that the cough only seemed to come to life when I was in important meetings with clients.  Eventually it morphed into a cough that would sneak up on me and burst forth before I had a chance to open my mouth so at one point, as the center of attention at a large conference table with 30 or so upper managers, I found myself making odd burbling, flappy lip noises and then hacking uncontrollably.  That particular meeting was with a public health agency.  Oh the irony.

To manage sleep, my oncologist prescribed Ambien.  At first, it worked.  Then it stopped working.  On my next visit, my oncologist checked my records and they indicated that I was taking 5 mg of Ambien.  She suggested going up to 10 mg and gave me a prescription.  This is where things went horribly wrong.  Assuming I was taking 5 mg tablets, I started doubling my dose.  It wasn’t until I went to get the prescription refilled that I discovered that the pills were actually 10 mg, so I was actually taking 20 mg of Ambien: also known as overdosing. Totally my fault: I should have checked the bottle.  In no way do I blame my oncologist - she rocks.  Something weird with the records. Afraid that I wouldn’t sleep before a day of important meetings, I took one more 20 mg dose of Ambien on a Sunday night and called the nurse on Monday.  She didn’t hesitate to tell me that taking 20 mg of Ambien was a no-no.

The sleeplessness, the fuzzy-headedness, the cold, and even the Ambien overdose might not have landed me at Harborview had there not been so much other stress happening in my life.  Let’s take a little inventory, shall we?

  1. Work: Before starting chemo, I took on a new client (the aforementioned public health agency).  The work seemed paced out and manageable. I would be helping them with their overall communications strategy and supporting a part-time PIO for a period of 4 months.  Totally in my wheelhouse and a great team of people.  I mean, what’s the worse that could happen?  Then the Ebola crisis hit.  The first case of Ebola had landed on U.S. soil and public health agencies across the nation were scrambling to prepare for whatever media S-storms came their way.  The agency also had other emergent needs. I jumped in to help as much as I could while trying to keep up with my other client work and juggle a million doctor appointments.  All the while, I hadn’t told my clients that I was undergoing breast cancer treatment.  I was too afraid that they’d lose faith in my reliability.
  2. Parenting:  My husband has been amazing through all of this, but both of us had been struggling with our three (now four) year old.  He has the capacity to be an incredibly sweet, sensitive little boy which often gets overshadowed by the fact that about 60% of the time, he’s an S-show.  There, I said it.  I love him with all of my heart and I don’t want him to go through life like this.  But parenting while having breast cancer gets very complicated. How tough should I be on him when I know a lot of his bad behavior is because he’s stressed about his mom’s health?  How do I balance time with my kids with work and also the need to rest?  How can I make sure life feels normal around him when it’s not normal at all right now?  I had been working my google fingers to the bone trying to find resources on parenting while having breast cancer but kept getting led to publications like “A Mom’s Last Letters to Her Children.”  Ack. 
  3. Genes: This is an issue that I can only allude to because to explain the story, I would have to divulge private information about another person. While I am open to sharing my own details, it would not be fair to publish details about someone else without permission.  I also think it’s kind of an odd situation that might not be helpful to anyone else to read about.  So, I’m just going to leave it as this:  there was (and to some extent still is) something horribly, horribly stressful happening in the relationship I have with a relative whom I love dearly and having breast cancer has made the situation worse.  Those close to me know who and what I am talking about.  Nuff said.

So.  There I was.  Stressed over cancer, work, my son, and an important relationship.  Over the course of several weeks, I had slept an average of about 3-4 hours a night.  I had a tiring and embarrassing cough.  Chemo and the pre-meds had left me fatigued, constipated, rashy and bald.  And there was the Ambien, which I have since learned is a fairly evil drug, especially if you don’t actually sleep and even worse if you are overdosing.  During the weekend of my kids’ birthday party, I was up and down, sometimes crying, sometimes screaming, and totally exhausted.

When I woke up that Monday, I knew it was not good.  My mind was racing a million miles an hour with incomplete thoughts.  When I spoke, I felt like I was yelling above a noisy crowd, but that crowd was in my head.  I struggled to keep myself together, but I felt like I was sounding crazy. Trying to facilitate a meeting, I got into an argument with a police captain that continued after the meeting.  Frustrated, confused, feeling stupid and angry, I yanked my wig off in front of him and told him I’d been going through a rough time so I’d appreciate some patience.  By the time I left, I was crying uncontrollably.

I had scheduled a visit with my in-laws so that my mother-in-law could give my wig a trim.  I stopped at a grocery story to pull myself together and buy her some flowers.  But at their house, I was crying again.  I cheered up a bit in their presence, but after I drove away, things went downhill fast.  

My thoughts kept racing, and now it was about all of my failures and embarrassments of the day. I wasn’t keeping up with my work.  My work as a consultant demanded that I be one of the smarter people in the room, but insomnia and chemo drugs made me feel like the village idiot and an emotional wreck. I hated having to go through chemo and the way it seemed to be impacting every facet of my life. I felt ugly and confused and like I would never be myself again.  Yes, chemo was helping me live, but what kind of life?  A life where my body after surgery and reconstruction will look like a crazy quilt and I will be forever in fear of cancer returning?

Suddenly, I realized that I was driving through red lights, as if a part of me wanted to get into an accident.  I gripped the wheel and got onto the freeway, trying to pull myself together, but my thoughts kept drifting to what felt the most comforting at the time: killing myself.  I didn’t know how exactly, but I just wanted it all to end, and soon.  I became so afraid that I would do something while driving that would hurt someone else that I knew I had to get help.  I was on my way to pick up my son and it was clear that he would be in danger if I were to continue to drive while I was in this state.  

Thankfully, even in my fuzzy-headed state, I also knew a lot of people counted on me and loved me.  Among the dark thoughts was this streak of clarity now and then: ending my life would be a horrible thing to do to the people who have been supporting me and who need me.

I drove to Harborview Emergency and checked myself in.  After a short wait, they ushered me in to the emergency psychiatric department.  I had to check in my bag, my jewelry and high-heeled boots (no sharp objects allowed).  

The walls are painted gray, the room was plain and grim.  I could hear the occasional wails  and shouts of other patients and smelled the faint aroma of bleach, vomit and feces.  One of the nurses moved my bed closer to the emergency call button.  “You’re the only female in here right now.  You should be fine, but push the button if you don’t feel safe.”  This was not a place that I would have gone willingly had I not been in such a terrible state.  I laid down, covered myself in the institutional-grade blankets and wept.

A couple of hours later I think (I had no idea of the time), a nurse came in and told me that I had visitors.  It was my amazing in-laws. They were so kind to me, so sympathetic.  I can’t believe they drove to downtown Seattle in rush hour to see me.  My husband was driving up from Olympia with our daughter (Carter had been with my parents for the day).  Josh handed Lovisa off to my in-laws and then stayed with me until I was released.  I was relieved to see him and hold his hand.

I’m so grateful to the psychiatrist at Harborview.  She listened to me, gave me just the right sympathy and kind words, and made a call to the psychiatrist at Seattle Cancer Care Alliance.  Since I’m being completely honest here, I need to divulge that this was not my first bout with depression and suicide. It is something I have been dealing with since I was a teenager. Fortunately, my depression has been well-managed over the past many years with counseling and the right medication. However, I knew I needed the extra support through cancer treatment so I had requested help from SCCA’s psychiatry department two months earlier.  I turns out that my request had been lost in their system. The call from Harborview got it back on track.

Since then, things have gotten much better.  I’m sleeping, my head has cleared, my health is better, and I love life again.  I’m so glad I sought help, and I’m grateful for all of the people in my life who have been supporting me through this ordeal.  Even at my worst, I knew I couldn’t let you down!

The SCCA psychiatrist got me off Ambien and onto a much better drug regimen so I now sleep like a baby.  I have been upfront with my clients about my breast cancer and am pulling back on some of the work.  The aforementioned police captain reached out and we made peace - such a good guy. A social worker at SCCA helped get me in touch with the Young Survivor Coalition so that I can talk to other women my age who are raising small children while dealing with breast cancer.  There’s even a chapter in Olympia! As for the relationship issue mentioned earlier, things still aren’t great, but I am more at peace with the situation.  A nice trip to London and Paris with lots of walking, eating and resting finally kicked that cold. Getting a break here and there from chemo recently also restored aspects of life that I had lost: the taste of food, happy memory-jogging smells, my energy, my mind, and my strength.  Dance, as ever, saves me time and time again and I am grateful to my sweet students and the opportunity to teach each week. I feel like my old self again: the self I actually like and wouldn’t mind having around for a few more decades. It also seems pretty clear that my family and friends want me around, too.

Many people have said that I’m brave, but I’m not always sure.  To me, bravery requires a choice.  People who serve in the military or as police officers or who fight fires or stand up for civil rights under threat of violence: these people choose to put themselves in harm’s way for the good of others.  They could stay home, but they selflessly choose to face danger head on.  I don’t feel like I have a choice, or, at least, it doesn’t seem like much of a choice.  My form of cancer is fast-growing and aggressive.  I either go through treatment or I die.  Is that bravery or just the responsibility we all have as humans? It feels like there is no option of just staying home.


Getting help when I wanted to give up?  Well, okay, I’ll humbly accept the bravery label on that one. It felt like it took some courage anyway.  But I don’t feel like what I’m going through is all that special. I know so many people who have suffered in their lives, whether over death of loved ones, fertility complications, major illnesses, job loss…you name it.  I’m proud to have many courageous people in my life.  I hope my story shows that even in the darkest of moments, there are people who can help.  And life is worth it.

Thursday, November 20, 2014

Catching Up With Chemo Part One

I have heard from many friends and family that they'd like to stay abreast of this whole cancer business, so to speak.  I've been such a boob about posting so it's high time I get a few things off my chest.  (Yes!  The breast cancer puns just keep coming!)  I do love the attention and plan to milk it for all it's worth. (I can't stop!)

Anywhoozle, much has happened over the last few weeks: more chemo dates, head-shaving, a makeup workshop with my favorite drag queen, my kiddos' birthdays, a visit to Harborview emergency, London, Paris...you know, the usual.  In Part One of what I imagine to be a three-part series of posts, we will learn what has been happening on the chemo front, along with other notable events along the way.  Here goes...

Since the last post, my chemo dates have been primarily with family.  For Chemo Date # 7, I took my little Carter with me and was joined by the amazing positive force that is my Aunt Catina a.k.a. "Tia."  Technically, she's my husband's aunt but I love her so much that I'd be a fool not to claim her as my own.  Back when I worked full-time, she took care of Carter for the first year and half of his life and she and Carter are still very bonded.  Since Carter had been having nightmares and in general seemed stressed about my chemo treatments, it seemed like the perfect opportunity to bring him along so he could see it was no big deal.  It worked!  Whatever he was imagining stopped haunting him and he turned into a calm, perfect little angel who minds everything I say.  Okay, that's a lie.  But at least he doesn't seem as stressed about the chemo.
 
As chemo progressed, my hair started getting thinner and thinner and it was making a mess all over the house.  A clump here, a handful there.  I couldn't stand to watch the slow death of my hair and was tired of cleaning out the tub so I had my head shaved.  It’s very handy that my mother-in-law does hair for a living.  She was kind enough to open up her salon for a little shaving party followed by a lovely lunch and a stop by the Chocolate Man. Eat your heart out, Joan Lunden!


I have a wig that I can wear, which doesn’t look so bad in this photo, but it drives me crazy and makes me feel very self-conscious so I usually just wear a hat.  I’m not going to lie, I miss my hair a lot.  Probably more than I should.  Darn vanity.

The next day after shaving my head, I joined my amazing belly dance students for a Making Strides walk in Tacoma to raise money for breast cancer research.  There were about 25 of us, I believe, all in pink jingly coin belts.  I think we were the 3rd highest fundraising group?  It was amazing and randomly, my best buddy from high school, Cedric, happened to be there.  It felt so incredible to walk with my kids, my husband, and so many people I love.  We were a force to contend with!  Thank you especially to Michele Loveday for organizing.

The next day after that, I hosted a makeup workshop with the irrepressible Atasha Manila.  Atasha performs at Inay’s Filipino restaurant among other places and is one of the most creative, most hilarious, most big-hearted performers I know.  The Inay’s show includes about a zillion costume changes and so much exuberant raunchiness that my jaw usually aches from laughing by the end of the night.  

When not Atasha, he is Louie and he happens to be a professionally trained, very talented makeup artist.  It was wonderful to share a ridiculously fun afternoon with him and several sweet women.  


Sometimes I feel like the luckiest breast cancer fighter in the world to have Atasha in my life: who better to understand how to use wigs and fake boobs to feel like a woman?  Smoke and mirrors, baby.  I love you SO MUCH, Louie!


My mother-in-law joined me for Chemo Date #8.  She was so kind to bring me gifts including a box of chocolate from the aforementioned Chocolate Man.  (I accuse my mom of being an addict, but I apparently am no better!)  The details of this chemo date are a bit fuzzy because it was about at this point that I had not slept well for several weeks, had been fighting a 40-day cold, and was accidentally overdosing on Ambien.  More on that in the next blog entry (ooooo…foreshadowing!).  However, I remember it being a very nice time and we were also grateful that she came back to Olympia with me and helped us take care of the kids, along with making a giant casserole.  She rocks.

That weekend, we celebrated the kids’ 1st and 4th birthdays.  They were born three years and 1 day apart and while they are small, we’re getting away with combining their birthdays (thank goodness!)  The party had a lion theme, complete with homemade tissue paper lion faces and goodie bags, a lion cake and lion cupcakes.  Carter came down with a little bug so he ended up quarantined in his room. In a way, that was okay because Lovisa really had a chance to shine.  We celebrated more the following week to make up for it.

So you might be wondering at this point how I am doing so much while undergoing chemotherapy?  Participating in a breast cancer walk, hosting a makeup workshop, throwing a party for the kiddos, all while running a consulting business, teaching dance, being a parent, and suffering from horrible insomnia and other debilitating effects of chemo.  It turns out that was not such a good idea.  Again, more on that in the next blog entry.  (The suspense!)

Chemo Date #9 was with my dear friend Gabriele.  She started as one of my students but really, our relationship goes far beyond its roots.  We braved Helene Ericksen’s Anar Dana dance program together and have also had fun adventures such as seeing the Shen Yun Dance Company.  I adore Gabriele.  She is the perfect mix of sweetness and spice.  And Gabriele, if you are reading this, honestly, the henna party was the first time I’ve ever been to Len’s house!  You have nothing to worry about!  teehee

Chemo Date #10 was with my little mom again who was cute and supportive as always.  I should also mention that at this point, it was becoming a regular thing that I was getting hooked up with my most favorite nurse for my chemo treatments.  I originally met her as Michelle (see earlier blog post) and Mitch, as she is now known, is like family. But even cooler.  She’s smart, quick, and chic.  Stars aligned and she just happens to get assigned to me over and over.  I love it!

The last two chemo appointments including today’s I have done on my own.  Because I haven’t been having allergic reactions, they’ve been able to remove Benadryl from my list of pre-meds.  That means, I can drive myself!  And I can use the chemo time to work, write, read and simply be quiet.  Heaven.


I’m now done with the first 12 rounds of chemo that included Taxol. Week after next, I start the AC regimen for 4 treatments, every other week.  This one is supposed to be a little more brutal, but at least it’s not every week.  After that, I will be having surgery to remove my left breast (February) and will start radiation in about late March.  There’s much more to go, but at least we’re making progress.  Next entry: my visit to Harborview, and then in the entry after that, I’ll take us to Paris, London and Bath which will be a much cheerier subject.  Stay tuned!

Leaving with a parting shot...my dad photobombing me and my sis after we went to dinner with him. He should have had more than sliders with that wine.  Just sayin'.