Women, Men and Horses Go to Battle, Cancer Retreats

The Report from the Battlefield

I brought out the cavalry over the last few weeks, and we’re winning.  My beautiful band of warrior women, a few good men, and strong, sweet horses have seen me through chemo treatments #4, #5, and #6 and tests are showing that the tumors in my breast have already shrunk by half. Yes, half!  Not only that, all of the little satellite tumors have disappeared and even the tumors in my lymph nodes are shrinking.  Those results were after only three treatments! Just imagine what the last few weeks have accomplished.  My friends, medical staff and I brought out the big guns and we aren’t taking any prisoners.  Take that, cancer!  We know you are cowering like the cruel and injudicious enemy that you are.  FYI, we aren’t taking anything less than defeat.

Breast Cancer Walk October 11

Speaking of armies, we’re literally marching against breast cancer on Saturday, October 11 in Tacoma. My wonderful belly dance students have organized a team, complete with pink coin belts!  Big love to my dear friend and student, Michele, for heading this up.  To join our team or to contribute, visit my page: http://main.acsevents.org/goto/JoyAmiraJohnston

Chemo Dates #4, #5, & #6

It has been challenging to keep up with this blog because my PR business has picked up in crazy ways.  Not that I’m complaining. I love to work and it makes me feel useful and alive.  However, it definitely shifts priorities.  To put it in perspective, I have contracted for more hours September through December than I have had total for the previous 9 months.  Add to it this whole cancer thing  - which feels like a part-time job -  plus a family and a dance career.  Makes me a busy gal.  Blah, blah, blah, everyone is busy, right?  I feel terrible that each of my chemo dates didn’t get a full write up as I planned to do.  I hope they’ll forgive me!  Here are some photos and brief summaries of my dates to get caught up...

During the worst of all my crises,

friends appeared.

Since then, the first thing I do 

is ask for help.

~ Paulo Coelho, from Chronicle - Crises and Their Traps

My lovely friend Whitney joined me for Chemo Date #4.  I had hoped to catch up with her more, but I was given Benadryl again and very quickly became a terrible conversationalist, worse than usual even.  Whitney was very patient with me, thank goodness. The treatment went long (three infusions plus some paperwork problems) so Whitney was kind enough to head across the street and pick up a late dinner for us at A Terrible Beauty.  I had an amazing time under her care and it was fun to swap stories about our babies, husbands, and careers.  She is beautiful inside and out!

While on Chemo Date #4 with Whitney, my dear friend Michelle stopped by and brought me a giant bag of goodies: magazines, cookbooks, a head scarf, treats, and a Paulo Coelho book (hence the quote above, the first quote I turned to when I opened the book!)  So sweet of her and it was wonderful to see her.  Isn't she stunning? And so helpful to hold my chemo tube for me. haha

I am not posting a photo of my Chemo Date #5 because I'm sorry to say, she is hideous.  It's quite unfortunate, really. I feel sorry for her. We all do, but we put up with her.  Okay, that's not true at all.  I just forgot to take a photo, darn it!  My chemo date and friend, Taiece, is kind, loving and so gorgeous that the certain well- known coffee company that she works for has asked her to be a model.  She brought me my favorite, a PSL, from the above-mentioned anonymous coffee company to start the day.  My Uncle John from Montana and my cousin Tana stopped by, too.  It was so great to see them!  [And to all future dates and visitors...remind me to take photos!!!]  The day was a bit of an adventure since I had a flat tire coming into Seattle Cancer Care Alliance.  Fortunately, Josh's longtime friend, Bryan Williams, bailed me out. He met Taiece in the SCCA parking garage to get air into the tire, then Taiece drove me in my Benadryl haze to Firestone after chemo.  While waiting for the car, we had lunch at Cactus and then Taiece introduced me to the Goodwill at South Lake Union.  So dangerous...all designer and name brands, and, of course, proceeds support Goodwill.  Taiece pointed out that I might be the most obnoxious breast cancer patient ever.  What did I do after chemo?  I contributed to Goodwill.  I should have finished the day by rescuing a puppy.

Yesterday was Chemo Date #6 with my amazing and beautiful friend, Kristin.  The date started with a surprise visit from my friend and dance hero, Tina.  She is studying to be a naturopathic doctor at Bastyr and had wonderful insights on cancer-fighting nutrition.  She couldn't stay long because she had her own date with cadaver training, but it was such a treat to see her even for a short time.

Kristin and I are lucky to be going through life with sons who are only 3 months apart and who adore each other.  Our hubbies adore each other, too, but it probably would embarrass them to no end if I were to publish that on a public blog.  Wait, did I just type that out loud?  Kristin was having her own rough week but was still there for me with a smile.  Such a sweetheart!  We commiserated about having three-year-olds and laughed so much that the nurses had to keep closing my infusion bay door.  We were also productive and finished a fancy spreadsheet on vacation rentals for our group of friends.  Afterwards, we headed to Cactus (I'm becoming a regular!) and had a fabulous lunch.  I convinced my doc to lay off the Benadryl for now so that I could still function.  It was a much less dicey drive back to Olympia.

My instructor, Jordyn + Cooper & Elfy

In between chemo appointments, I've been riding every chance I get.  Included are a few photos from my latest riding adventures...thank you to my riding friends and to the horses and ponies, too.  Even though I've been getting much more tired as the chemo treatments go on, riding gives me energy!

I should mention that my husband and my mom have been providing endless love, support and patience during my treatment.  I couldn't do it without them!  Thank you!

My friend Rachel from Switzerland + Lancer

Finally, I'm including a lovely quote that my student and friend Meagan sent me.  I have named the crab tattooed on my neck “Hildegard.”  As Meagan smartly guessed, it was after St. Hildegard of Bingen. But what I didn’t know, is that the name Hildegard means “defending battle maiden.”  Rock on. Thank you, Meagan, I love it!  Here is a quote that Meagan sent me from St. Hildegard herself:

My friends/dance students Anastasia & Cathy + Zeus

Underneath all the texts, all the sacred psalms and canticles, these watery varieties of sounds and silences, terrifying, mysterious, whirling and sometimes gestating and gentle must somehow be felt in the pulse, ebb, and flow of the music that sings in me. My new song must float like a feather on the breath of God.

              ~Hildegard von Bingen

Chemo Date #3: Happy Bellies

I’m a little late in posting my report on Chemo Date #3 because, while the day of chemo was actually very nice, the days after were not so great.  I came down with The Worst Cold in the History of Colds and was laid out flat all weekend.  My head and throat were so full of sludge that I could barely breathe and I was so tired and achy that it was impossible to get out of bed. While chemo might not have been the direct cause, my hunch is that it doesn’t exactly help. 

My poor husband had to manage the kids all weekend and try to tend to me at the same time. It’s becoming clear to us that he will not be able to be my Florence Nightingale, though he would look cute in a mid-nineteenth century bonnet.  His primary job while we fight cancer is being Dad.  Particularly because we’ve got a three-year-old who is a hot mess right now because he’s worried about his mom.  We’re doing our best to talk with him and give him lots of extra love, but, well, he’s three.

Fortunately, time and rest are amazing medicine and it is now Tuesday.  I’m finally coming back to life, and I have lots of GOOD news to share:

1. Genetic testing came back and indicated I do not have a genetic predisposition for breast cancer.  This is helpful news as my doctors and I decide whether or not to keep a breast when surgery time comes along.

2. Tomorrow I'll get an MRI and biopsy that will help us see what kind of progress we’re making.  I’m feeling very positive about it because of the best news…

3. I can’t find the tumors anymore.  Seriously!  I had two nearly golfball-sized tumors in my left breast and they aren’t there anymore!  The tissue still feels a tiny bit odd, but not like it did before we started treatment. That’s only after three rounds of chemo.  They work miracles over there at Seattle Cancer Care Alliance! Not to mention all of the love and prayers.  It's working!

And despite walking pneumonia, then a head-to-toe rash, then the Evil Cold, it certainly hasn’t been all bad.  Last week’s chemo date was really fun.  

My friend and dance student, Sarah, picked me up around noon and took me to SCCA. As usual, I started with a blood draw and had an enthusiastic nurse who reached out and touched my crab tattoo before she realized that might not be appropriate.  I, of course, said, “Get your filthy hands off of me” and then punched her.  She had it coming.  Okay, that’s not true at all.  We laughed and I gave her the formal introduction to Hildegard, my Dungeness Protectress.

Sarah and I grabbed lunch in the bistro which has pretty decent food for a hospital.  We then headed to the 5^th floor to check in.  Unfortunately I was assigned to one of the lame bays.  Since this was only my third time there, I didn’t realize there were nice bays and lame ones, and I’m not sure I have much control over where I end up.  (Can I generously tip for a better bay?  Form an alliance with the bay assigner? I might be a little too addicted to Boardwalk Empire.) This one was tiny and cramped with curtains on three sides so there was very little privacy.  My other friend and dance student, Michele, joined us.  We huddled in my tiny room and tried to watch a little of the Liz Taylor Cleopatra but in the end, it was much more fun to talk.  About belly dancing.  And costuming.  And life in general.  And then more belly dancing.  I was in heaven.

Afterward, we took a walk and then hit happy hour at A Terrible Beauty across the street.  The evening was gorgeous and it was wonderful to sit alongside Lake Union in the sun.  No alcohol for me since my liver is already taking a beating with the chemo, but the appetizers were delicious.  Sarah also sent me off with beautiful vegetables from her garden. My students are so good to me.  I don’t know what I did to deserve such amazing people in my life.  Thank you Sarah and Michele for being there for me!  Big shimmies and hugs to you!

Chemo Date #2: Chocolate Makes Everything Better

Mmm....chocolate!

Yesterday was my second chemo treatment and this time, my cute little mom joined me.  I can’t believe I’m actually writing this, but, other than having to be hooked up to a pump, the day was a blast.

Since my chemo appointment wasn’t until 5 pm, I spent the first half of the day doing work and meeting with a client for my PR business.  Around 2, my mom and I drove up to Lake Forest Park with the kids to drop them off with my in-laws.  While we were up there, we stopped by Honey Bear Bakery for dinner to go and I surprised my mom with a visit to The Chocolate Man.  To say my mom is a fan of chocolate is a tragic understatement.  Let me try to convey just how much my mom loves chocolate:

• She has admitted (with pride!) that she eats dessert about three times a day.
• She likes to argue that things like chocolate chip cookies and cake are good for you because they have eggs in them.
• She worked in a chocolate shop for about 10 years (?), sometimes so much more beyond what she was getting paid for that she was practically a volunteer.
• When my mom and I went to Paris several years ago, we spent the entire trip seeking out world renowned chocolate shops, which deliciously led us to remote neighborhoods and sometimes dark alleys.  So worth it.

Needless to say, the surprise visit to The Chocolate Man nearly made her pass out.  This store is heaven: tons of different chocolate confections, bulk chocolate from all over the world, fresh truffles…she immediately dove into the samples and had I not whipped out my Cancer Card, I don’t know if I would have ever gotten her out of there.  I love her so much.

We headed to Seattle Cancer Care Alliance and arrived early.  I checked in for my blood draw and was immediately taken back to have my port accessed.  Turns out that 5 pm is a fabulous time to go for chemo – no waiting!  After my blood draw, we headed up to the fifth floor, checked in, and then enjoyed our scrumptious Honey Bear Bakery sandwiches while overlooking Lake Union.  It was such a pretty day and the air was electric with Seahawks fervor.  (Go Hawks!)

They called me into my chemo appointment early and everything went smooth as silk.  Ironically, one of the nurses happened to be the daughter of the owner of the chocolate shop my mom worked for!  We knew the family well since all of the daughters worked at the shop at one time or another.  A total sweetheart, she hung out in my room for a while to catch up and regale us with stories of her family.

I finished my appointment early – about 8:30 instead of 9:00 pm – which meant we were able to scoot out ahead of game traffic.  I’m doing okay today.  Had trouble sleeping despite taking an Ambien and I have broken out in a rash from my neck down to my toes.  Other than that, I’m feeling pretty spunky.  I’m very grateful to my mom for being such a wonderful support, and to my in-laws for caring for my kiddos overnight.  Overall, a great day.  The truffles were mind-blowing and the company even sweeter.

Next chemo appointment is Thursday and my date is my dance student and friend, Michele, possibly along with another student and friend, Sarah.  Sounds crazy to say it, but I’m looking forward to it!

Short and Sweet

Since my doctor said I’ll lose my hair for certain, if gradually, I decided to chop off my hair.  That way it won’t be quite so traumatic when it starts falling out.  Though I miss my long hair, I’m pretty happy with my new sassy ‘do, and I’m very grateful to my awesome stylist, Carolyn, at Salon Milano in Olympia.  She worked her magic!

I’ll keep this update short because I’m a little tired, though it’s hard to say how much is the chemo and how much of it is the walking pneumonia that I’ve been fighting for the past two weeks (yes, really!) Other than that, I’m feeling mostly okay. And even walking pneumonia hasn’t kept me down.   My PR business has been crazy busy lately, I rode horses on Thursday and my father-in-law took me crabbing on Friday.  Though I don’t think I have necessarily taken life for granted, having cancer has made me face mortality head on and reminded me how precious life is. It’s been nice to be able to do things I love, even if I have to fight through a little fatigue to do it.

Next chemo appointment is Thursday evening and my sweet little mom is going with me.  To those who have offered to be a chemo date, I’ll send a schedule out soon.  Thanks to everyone for so many kind texts and emails.  I have heard that I am also in many Christian and Buddhist prayers right now, and I am humbled and grateful for that as well.  It's working!

I think the kiddos have finally succumbed to their afternoon naps, which means my bed is calling my name…