What's in a Name?

Some people find strength in their name, trying to live up to its meaning. Zoe means "life" in Greek. Joseph and I thought that was appropriate, given the health challenges we were facing at the time of her birth. Kai means "ocean" in Hawaiian and "willow" in some Native American languages. We are hoping he can be sensitive and fluid, yet strong in a storm. I was wondering about the meaning of my name, hoping to find some kind of poetic power there. Can you imagine my disappointment to find that the Dannon company has branded me "little yogurt"? I'm determined to find something special in that.

fog

Okay, you've probably all heard about "chemo brain." I've heard of it too, but I laughed it off as one of those silly myths that people make up to excuse signs of aging. Well, I'm here to tell you it's no myth. I can't remember conversations, plans, dates, names or why the hell I find myself standing in the middle of the garage. Seriously, I stand at the fridge with the door wide open, trying for the life of me to figure out what the heck I wanted to get. Am I hungry? Oh, no, it's for the kids. I get Zoe's, Kai's and Joseph's names mixed up so that I'm starting to say, "Hey, you!" instead. It's like I have a constant hang-over.

People on the phone are starting to say, "Um, Danette, you already told me that." So, please forgive me if I repeat myself. It should go away a year after my treatment ends. Just in time to start showing normal signs of aging. Just in time to start showing normal signs of aging.

33.3%

Why am I always smiling in these damn infusion pics? Because I'm happy to be killing some cancer. Apoptosis! The update....my white blood cell count did the limbo, so I have to take neupogen shots for 5 days, starting Friday. Tuscano dropped by during my treatment and said that he can't predict how much pain I'll have, but he's hoping for less this time around (yeah, me too). My red blood cell count went down also, but not transfusion-low. I left the center with some artillery: special mouth wash for the sores, and pain meds for the bones. I'm ready!

Grateful

Mom and Dad are here for my 4th infusion. Mom came with a healing quilt that she and her Material Girls quilt group made for me. What a treasure! I keep wondering how I find myself surrounded by such caring, supportive people? They were there all along, but the cancer is allowing me to slow down and appreciate such love.
Peter surprising me with an afternoon visit, Belinda dropping off an apple crisp, check-in calls (almost daily) from Natalie, Penny's visit bearing gifts, money from my grandmother, constant cards and phone calls from my other grandmother, funny cards and emails from Kathleen, p.j.'s from Diane, cancer-killing drawings from my nephews, Berta's spa, flowers from students, tea dates from parents, surprises from Lynne, calls from Robin, phone calls and letters from cousins, a dragonfly from Elizabeth, sunflowers from Kristi, and gifts from friends of friends whom I don't even know. I am totally and completely grateful for good people in my life.

I Am Not My Hair!

I finally had to do it. Not because my hair was coming out in clumps, revealing bald patches, but because I couldn't stand finding hairs all over my clothes, cleaning it out of the shower and sink drains. Waking up with my pillow covered with it. Mentally, I needed to move on.



So, Joseph said he'd shave my head after work. I told Elizabeth of my plan and she delicately asked if she could watch. ok. Then she called Berta. ok. Then Natalie called to see if I wanted to go with her to get her nose pierced (Debbie and Kristi were going). I said I couldn't because I was shaving my head. Can we come watch? ok. Belinda called to ask if she could drop off a gift, so I said she'd have to join the party. Then I called Lisa.



It was a happening. We all gathered around our kitchen table, held hands and squeezed. Berta suggested we all think of a chrysalis metamorphosing into something new and different. I cried at the first swipe of the shears, but after that I felt excited.



Zoe was in good spirits because we had done so much work preparing her for this moment. But Kai was not happy. He kept saying, "I no like your hair" and it was obvious that he was getting increasingly anxious about the whole thing. Berta suggested leaving some hair just for him to get used to it, and so that when I wear my hats, there'd be a little hair sticking out at the bottom. It was a good idea. 3 days later, he's still saying, "You look like a man", and "I no like your hair", and "Grow it back, mom", but he's not freaked out like he was. (Peter, notice the bracelet:)



What could've been a sad evening for me turned out to be special and empowering. The universe sent me friends who are helping change my perspective about the whole hair thing. It's going to be hard at times, but it's going to be a way I can better answer the question, who am I really?........ I am certainly not my hair.

25% Finito

Okay, so this is me outside the center after my third infusion. My friend, Elizabeth, took the day off to accompany me. It was actually an enjoyable (?!) day. We shared secrets and gossip, which lightened the load a bit. The good news is that my white blood cell count is sky-high, so I don't have to take that nasty neulasta shot. The other good news is that my hemoglobin is up another point. I'm still below normal, but am absorbing more iron than I was. No transfusion in the near future.
I had a strange reaction to the last chemical this time. Elizabeth and I were in the parking lot, and my face started burning as if I had washed with acid. It was intense. I looked in the mirror and the capillaries in my cheeks had broken. My eyes were burning and I was getting nervous. About 5 minutes later it subsided. I reported the sensations to Tuscano and he said it was an allergic reaction to one of the drugs and at my next infusion, he's prescribing a higher dose of steroids and some benedryl. lovely.

Psychic Connection

My friend, Lorraine, sent me this poem yesterday. She said she had written it and then read my blog entry with the Genghis Khan reference. Amazing synchronicity.

transcend dance

defying
not defined
by the cancer
ravaging spirit
like Genghis Khan
in pursuit of
serenity
fierce love surrounding
her
dark chaos
silent turbulence
seeking a calm wake
bearing within
the image of wellness
like a sculptor
contemplates the rock
zest
and fear
entwined
compelling wisdom
from her bold spirit
to reach the light
again


loving you, Lorraine

Genghis is My Homeboy

I had a totally sucky day yesterday. It wasn't so bad physically, but my spirit took a major hit. For the first time, I was thinking, I can't do this 9 more times. Mouth sores, tired, headache, food not tasting good, losing hair, restless sleep, constipation, dark circles, sun-sensitive, blah blah blah. I'm under water, 3 feet above the ocean's floor, 9 feet below the surface. My energy must've been pretty strongly negative, because throughout the day I received gift after gift from the people I love. It started while dropping Zoe off at school. I ran into my class and got big hugs all around, a couple of presents and handmade cards. I got to see Penny, a friend who has recently finished her chemotherapy for breast cancer. She was back at work, energetic and beautiful as always. She showed me her new hair, which is about 3/4" long and she reminded me that what I'm going through is temporary. She said that after that last infusion, I'll only feel better and better and better. There is an end. Then, Zoe's friend's mom offered to take her after school for a playdate. She told me to rest and take a break from the norm, which I gladly did. Then, Elizabeth knocked on my door with a hug and words of encouragement. She reminded me to......"Keep telling yourself that this brutal, Genghis Khan medicine is going to help you. It is killing some innocent civilian cells along the way to kill the cancer cells, but you are going to bounce back from the bad days like today. You can do this." Then two-glasses-of-wine Berta called to schedule a spa date. She offered her babysitting and listening services........ A not so bad end to a sort of bad day.

Danette's Picks

I saw a blurb in last month's Yoga Journal about this woman who made a documentary of her cancer journey. So, Joseph and I watched it (thank you, Netflix!) and loved it. Kris Carr is her name, and she tells her story with such spirit. You're never bored following her from doctor to quack, to healing centers around the U.S. She is on a mission to stop the C-Beast! It was inspiring.

My friend, Elizabeth, just dropped off this book the other day. It's a fantastic autobiography by Marisa Marchetto. She was drawing cartoons for New Yorker Magazine, living the she-she life in Manhattan, about to get married to some hot shot restaurateur.... and gets diagnosed with breast cancer. The entire book is done in cartoon, which makes it fun to read, and she's got such a creative, comic book-way of letting you into her thoughts and feelings. Another strong woman telling her c-word story.

The Ripple Effect

So, I met with my Meditation group last night and Kate and I started chatting. She shared that her next door neighbor of 7 years is being treated for Hodgkin's Lymphoma. She explained that her neighbor is a very private person, who only exchanges with Kate on a superficial level. When she learned of the state of her neighbor's health, she didn't know how to respond. She said she was kind of suspended in a place of wanting to respect the woman's privacy, yet needing to offer help in some way. After reading my blog, Kate explained that for her, it demystified the whole ordeal. Reading about my experiences and seeing my pictures was a gift to her. It gave her the courage to approach her neighbor with a connection - "I have a friend who also has Hodgkin's Lymphoma. Is there anything I can help you with?" Just being able to say that helped Kate and her neighbor come together honestly. She told me that I will never really know in what ways my being open about this experience will positively influence others. The ripple effect is so subtle, yet powerful. Thank you, Kate, for sharing with me.