St. Peter and the Quest for Wheat Toast

It’s day three here at Providence St. Peter Hospital and other than being hooked to an IV for 60+ hours and a desperate yearning for wheat toast, it’s not bad. The downside is that it looks like for the next 5-6 weeks, I’m going to be “The Joy in the Bubble” and we’re going to need a lot more help with the kids.

St. Peter, the Rock
I arrived here on Thursday night with a fever.  Because I’m now on the AC chemo regimen (a.k.a. the “red devil”) I’m at risk for low white blood cells and therefore infection.   The magic temperature that sets off action is 100.4.  My temperature was 100.5, so I had called the after hours resident on call at Seattle Cancer Care Alliance.  We were told to go to the nearest emergency room immediately so they could give me antibiotics. We headed out to St. Pete’s in Olympia, about 10 minutes from our house. As I write this, I’m feeling pretty fantastic.  However, at that moment, I was going downhill fast.  I was achy and chilled, my throat felt like someone had taken sandpaper to it.  I was grateful Josh came with me (my mom was home with the kids) and was looking forward to grabbing a prescription and heading home.

Au contraire mon frère. My white blood cell count was crazy low so they admitted me.  Poor Josh stayed with me until they found a room for me at 3 am and he still had to go to work on Friday. 

The next morning, an oncologist from St. Pete’s visited me and gave me the scoop on my counts. She also let me know that I would have to avoid raw vegetables and fruits that can’t be peeled because my system can’t fight the bacteria that might be on them.  Somehow, the hospital kitchen, “Cascade Cuisine…Excellence Through Compassionate Service,” interpreted this to mean I can’t have many foods, including raisins or wheat toast.

So, for the last couple of days, I’ve been holed up at St. Pete’s getting pumped with antibiotics.  The nurses and MA’s have been phenomenal.  It’s also been nice to get to know the oncology staff here at St. Pete’s.  I really liked the oncologist yesterday.  He gave me the skinny on everything, and then when I told him about my wheat toast ordeal, he seemed as annoyed as I was about the kitchen’s refusal to give it to me and entered a note into my dietary restrictions:

Patient not to have raw fruits and vegetables.  Patient may have all other foods including cooked vegetables, fruits with peels that can be removed, and wheat toast.

Apparently, he was also in the hallway grumbling something like, “And for goodness sakes, let’s let that poor woman order some wheat toast.”

Unfortunately, the power of a renowned oncologist only goes so far at Cascade Cuisine because this morning I tried to order wheat toast along with oatmeal and raisins.  All the meds can really mess up a system so it’s nice to have some roughage. 

“No, ma’am, I’m sorry.  It says right in the computer you are on a soft diet.  No raisins.  No wheat toast.”

“But, I'm not on a soft diet.  My teeth work fine.  I’m on a general diet, I just can’t have raw fruits and vegetables.”

“Talk to your nurse and call me back.”

Enter: my hero, Becky the RN.  Becky has some spunk and even as a kid used to get in trouble for sassing her teachers in Scotland.  I like her a lot.  She called Cascade Cuisine and read them the note on my file, the same note that is on Cascade Cuisine's computer screen.

“So, if it says she can have wheat toast, why does she need to have a conversation about it?”

Becky rocks.  I got my wheat toast while writing this blog entry.

The Joy in the Bubble

I’m headed home sometime today, but life is going to change a bit.  I’m still really susceptible to catching any little bug that comes along and it’s very dangerous if I get sick because my system can’t fight it.  This means I’m going to have to limit my time in public.  When I do go out, I’m probably going to have to wear a mask, especially during the window after chemo and before my white blood cells recover 10 days later.  I’ll be washing my hands profusely and dousing myself with hand sanitizer.  It totally sucks.  I don't like being such a delicate little flower.

Then, there’s the issue with our kids.  They are walking petri dishes, and they are mixing and matching germs with other walking petri dishes at daycare.  So, we might be pulling them out of daycare and keeping them at home.  We’re going to need a lot of help, especially because the AC chemo knocks me so far down that I won’t be able to care for them for several days after treatment.  

CALL FOR HELP: Any (healthy) friends out there who want to come to Olympia for a day to help with the kids, let me know. We’re setting up a calendar.

Fortunately, this happened during a time of year when people are typically antisocial so it’s not like we’ll be missing any parties or anything and people generally have copious extra hours of time on their hands to help us out. Oh, boo.  There’s always next year.  Except that I’ll probably be undergoing an 8-hour reconstructive surgery next December.  Okay, there’s always Christmas 2016. THAT Christmas is going to be phenomenal!

Thanks to everyone for their support.  I’d also like to send a special note of thanks to Denise McCroskey. Her own breast cancer blog helped me immensely and when I contacted her this weekend, she got right back to me with really wonderful words of encouragement.  You’re amazing, Denise!  Here's one of her posts about Adriamycin Cytoxan (AC).

Catching Up with Chemo Part Three: Europe

I indicated there would be more uplifting posts and I promise, this is one of them!  Part travel log, part love story, here’s my tale of traveling to London, Paris and Bath and, other than a little fatigue the first day and being bald, this story has very little to do with chemo.

My husband and I had been hoping to go to London for a while. Our beautiful and charming friends, Sam and Bri, moved there for work and we were dying to visit them.  Since in 2013 we were busy being pregnant and then parents to a newborn, 2014 was officially our year for international travel.  Then, this whole cancer business popped up.  Fortunately, we were able to work it out with my doctors who not only flexed my schedule, but also encouraged me to go.  It was the best thing for me.  If there isn’t already a foundation that supports sending chemo patients on vacation, there should be.  I had a chance to step off of the rollercoaster of physical and mental stress and to enjoy life again.  But to understand this story, let’s step back even farther…to about 11 years ago at a place called the Irish Emigrant in Seattle’s U-District…

I met my husband, Josh, on karaoke night at a divey bar that was once the Irish Emigrant.  Dangerous Dan was hosting and the drinks were flowing as usual.  Neither of us can sing, but Josh’s friend, Tristin, can do a mean rendition of “Piano Man” that brings down the house.  I couldn’t help but to give Josh a “your friend’s good” nod, and it was then that he made his move.  Before we knew it, we were sharing beers and eventually sang “And It Stoned Me” together.  I still remember how his hand felt on my back as he led me to the stage.  I felt like I was home.

We were married in 2007 and now have two little kiddos running around the house.  Life with Josh is chaotic, loud and fun: that’s what I get for marrying a big, gregarious Italian who, as we say, puts the “ass” in “assertive.” He’s also incredibly caring and the most honest person I know and he puts up with me, which is a feat in itself.  I won’t say we've never had challenges. We learned the hard way that if you leave your marriage on the back burner, eventually the soup will cook off and the pot will burn.  Or something like that.  Though I would never recommend going through a rough patch to learn a lesson, I will say that it oddly prepared us for what is happening now. We don’t take our marriage for granted, and I’m grateful everyday that Josh is by my side. This cancer thing is just another chapter, it’s temporary, and it will pass.  At least we’re together.

So, traveling to Europe in the midst of chemo with my husband, sans children, was particularly restorative.  We left on Halloween night and arrived in London at noon the next day.  Ever classy, our friends sent a car for us.  We were scooped up at the airport and brought straight to their doorstep.  They live in a beautiful two-bedroom apartment not far from Kensington Gardens.  The place oozed our friends’ good taste.  In fact, I understand that they have a dining room table and chairs for sale, should one desire to have some of that good taste for one's very own.  (More information and plenty of unsolicited commentary available on Facebook.)

The first night in London, we went to an amazing Lebanese restaurant, Al Waha.  We ordered the set menu and then sat back and watched as one beautiful dish after another paraded before our eyes.  That’s a lie!  We inhaled the food like rabid hyenas – no sitting back and watching for us!  We even dug into the basket of raw vegetables placed at our table, though there was some concern that the vegetables were actually a centerpiece.  We’re talking whole bell peppers, scallions, a head of lettuce, there might have been rutabagas in there, I don’t know.  If anyone knows if this is for ambiance or consumption, please let us know.  I’d hate for Sam and Bri to get kicked out of their favorite Lebanese restaurant for eating the decorations.

My belly dancer heart, of course, was in heaven.  Fattoush!  Kibbeh! Falafel! I ate so much that I nearly had to be rolled back to the apartment.  I passed out at about 8 pm that night and didn’t wake up until 4 pm the next day.  Usually I hate being lazy, but I figured I had the mother of all good excuses: I’m fighting cancer. Boom!

The next day we ate at Côte Brasserie which appears to be UK chain, but very upscale French and it prepared us for our journey ahead: Paris.  You might also notice that a pattern is emerging.  I like to travel by stomach.  Sam was very hungry that night and ordered half the menu.  We have no idea how he still fits into his skinny jeans.

On Monday, we flew to Paris.  Because our friends are in the UK to work, we wanted to give them some time during the week to do just that.  It was a sacrifice, to be sure, but being the good friends we are, we suffered through several days of Paris.

Paris.  To love this city is cliché I suppose, but how can you not?  Everywhere we turned, there was beauty: stunning, poetic, heartaching beauty.  I had been there about 12 years earlier with my mom and this time, once we stepped onto Paris’s streets, I couldn’t believe I had stayed away so long. The architecture, the river, the light, the love songs sweetly pressed through accordions, the fashionable women en velo talking on cell phones, the joie de vivre and, of course, the food. What’s not to love?!

Our first day there, we explored a bit, but since rain was coming down in buckets, we holed up in a little corner café and drank champagne as the wet world went by.  My observation about what’s in vogue in Paris at the moment?  Bedhead.  Gorgeous designer clothes, fabulously quaffed suits, stylish shoes and accessories, and serious I-just-had-a-good-romp bedhead.  The contrast actually works, but of course, Parisian women seem to have a knack for putting together a look that is both edgy and classic at the same time.  Made me miss my hair – my wig was far too structured no matter how much I tried to mess it up.  Guess I should have employed Josh to help me mess up my wig. hehe

Around 6:30 pm, we were starting to get hungry so we set out to find a restaurant for dinner.  We leaped over puddles and hurried through the wet cobblestone streets until we came upon a restaurant with a lovely menu.  Glad to be out of the rain, we quickly stepped inside and politely asked for a table for two.

You would have thought we had just said, “We would like to get naked in your dining room and then set the curtains on fire.”  We’re talking utter, record-scratching, jaw-dropping, baffled horror on the faces of the wait staff. I had forgotten a cardinal rule: nobody eats dinner in Paris before 8 pm.  Pas de problème! More time for drinking!  We headed out for more beer and wine to wait for the magic dinner hour and later that night found ourselves in a lovely little Italian place with to-die-for handmade pasta. 

The next day, we explored Paris on foot.  The rain had cleared, and our cute little hotel, L’Hôtel des Saints-Pères, was well located in St. Germain, which put us close to the Seine, Notre Dame, the Louvre, the Quartier Latin and an easy walk to three of Paris’s breathtaking gardens: Le Jardin des Tuileries, Le Jardin du Luxembourg and Jardin des Plantes.  We started the day with croissants and coffee from one of the many bustling boulangeries and from there, crisscrossed all through central Paris’s sights, stopping for baguette sandwiches at lunch.  Feeling spunky, we decided to do a walking tour from one of our guidebooks through Le Quartier Latin. It seemed like a cheesy (excuse me, fromagey) thing to do at first, but it led us to some sites we might not have seen otherwise.  Like the Paris Mosque.  And the Roman amphitheater where old men now play petanque.

Knowing we shouldn’t dare try to eat dinner before 8 pm or risk being deported, we grabbed some yummy cheese, a crusty baguette and a bottle of wine and headed to our hotel to rejuvenate before dinner.  The French might be onto something here. That night, we had boeuf bourguigon at a so-so restaurant, but well, it’s Paris so even so-so beats the pants off Applebee’s.  We vowed to do some research and find something amazing for our last night in Paris.

Our second full day in Paris, we woke up at the bright hour of 11 am and wandered out for croissants and coffee.  I had been itching to see the Ancient Egyptian art at the Louvre and Josh was kind enough to indulge me.  The Louvre boasts being one of the largest, if not THE largest art museum in the world.  It not only houses an incredible collection of art (including superstars like the Mona Lisa), it is also an opulent palace.  Not a bad way to spend an afternoon.  That night, we dined at Le Bistrot D’Henri.  This place was the real deal.  From pâté, to veal with butter noodles, to the chocolate mousse…I could eat that meal a million times over.

Satisfied that we had eaten and walked our way through as much of Paris as possible over the course of a few short days, we headed back to London that Thursday. Back in London, Bri treated me to a night out at the Book of Mormon. We laughed our asses off and then met up with the boys later on. They had been out drinking with Sam's friends, but failed to remember to eat until 10 pm.  They were a bit of a mess.

The next day, we boarded a train for Bath.  Sam and Bri are the perfect travel partners.  Our itinerary in Bath generally consisted of the following:

Beer

Food

A little walking

More food

Sleep

Food

A little sightseeing

Beer

Food

Beer

A little walking

Wine

Food

Sleep

Food

A little walking

Beer

Food

Beer

Back to London

I could not have put together a better itinerary myself.  We ate at incredible restaurants including the Marlborough Tavern and Rustico Bistro.  

Despite all of the eating and drinking, we did get to see some of Bath’s highlights including the Fashion Museum, the Bath Abbey bell tower, and the Roman Baths. 

I may or may not have gotten a little tipsy on the last night and started a cheerful diatribe about crumpets and Corgis before passing out in bed with my wig on.  (One step closer to Parisian bedhead!)  Good food in my belly, uninterrupted time with my sweet husband, the warmth and love of being with friends: I had officially reached off-the-charts happiness.

Our last full day in London, we headed out to see some of the sights and met up with my friend, Gina, and her adorable daughter, Valentina at the White Horse. Gina has always been one of my most favorite people on this planet so it was great to see her.  She was fun and irreverent as usual, and I also got to tick off another food item on my British bingo card: bangers and mash.  That night, we ate yet another mind-blowing meal at Aphrodite Taverna.  Sam and Bri really know how to pick ‘em.

By the time we boarded our plane to Seattle, the rest, walking and eating had restored me to the person I was before chemo started.  It was just me, my old self.  It was so nice to take a week off from chemo to remind me why I’m doing all of this in the first place: so I can stick around and keep living this great life.  I was joined at the hip with my husband for nearly the entire trip, and I only wanted more time with him.  It was wonderful to see our friends and I can’t wait to see them again, whichever side of the earth. 

Since the trip, I had two more rounds of the Taxol cocktail and last Friday, I started on the AC chemo regimen.  Josh came with me and supported me as we journeyed into this leg of the cancer fight.  Afterward, we headed to Paddy Coyne’s for dinner.  Standing outside was none other than the owner of Paddy Coyne’s who also owned the Irish Emigrant.  I sidled up to him and thanked him – without the Irish Emigrant I wouldn’t have met my husband.  The ruddy-faced Irishman smoking a cigarette outside of Paddy Coyne’s was oddly responsible for the life I have – Josh is my best friend, father to my children, and now my caregiver.  I feel like the Irishman's presence that night was a reminder that forces far greater than I can comprehend are at work.  Hundreds of hands have been helping me through all along – my family, my friends, my friends’ friends, total strangers: some visible, some invisible, all have helped to weave my destiny, as each of our destinies have been woven.  My side of the bargain? To honor the forces that have shaped this life by keeping this life going. As I head into these dark few weeks, I am determined to emerge again at the other side stronger.  And more grateful.

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.

40^th Birthday Celebration: Many of you have probably already guessed, but we are cancelling my 40^th 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 29^th, 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.