Put the wet stuff on the hot stuff………..

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“Put the wet stuff on the hot stuff, and put that fire out….” it is part of the song the ‘firemen recruits’ perform in Legoland’s “The Big Test” show.  A song I can perform by heart after seeing Trevor do this show for six years. Then, Michelley in the same show. And, now, it is Michael and Christopher’s turn!

Michael auditioned.

Trevor will not be available for Legoland much during his second season at Cirque de la Mer. This created an opening and an immediate need. An audition was announced and held with a good number of acrobats attending.

And, Michael made it.

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Michael as Vern.

At this same time, the part of Chief was opening as well. The part that had four or five actors already committed and entrenched in this position for years. The part that Chris said he would love to do after seeing the show for the first time.  Some day.  Maybe.  Knowing this would most likely never happen. Not with a cast this deep for just one main role.

Sometimes, impossible things can suddenly become most possible.

The Entertainment Department put out the call. An audition for Chief. The other four actors suddenly had other gigs elsewhere, or moved over to other shows at Lego. Chief was open. Another audition was held.  Chris answered the call.

And, Christopher made it.

Chris as Chief with his brother, Trevor behind him as Marco as they enter to perform together.

Chris as Chief with his brother, Trevor, behind him as Marco as they enter to perform together.

Michelley and Trevor are out and Michael and Chris are in. I guess I will be hearing the ‘wet stuff on the hot stuff’ for a bit longer.  Before Trevor leaves for Cirque I get to see all three brothers perform together.  It would have been awesome if Michelley had been here to perform with them. They are all so good at their parts. I can never tire of this show and seeing my kids performing in it. The song, however, is another story.  It sticks in my head.

For days later.

I pull the bottom of my shirt away from my body, creating a fan, and try not to let it rub my skin too much. My burnt skin. This song goes through my mind over and over as I wait for Dr. K to enter. I wish it were that easy, to just put the wet stuff on the hot stuff.

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How Michael fights fires as Vern.

I am on fire.

We had expected the chemo to boost the side effects of radiation. Doing both at once, necessary, but, not part of the original plan.  Dr. K said it would amplify the side effects from radiation.

I do not think she expected it to burn quite this bad.

I am crying all of the time. Even though I am not actually crying. I am not sad.  My eyes are crying. Tearing. Welling up my lower lids and spilling over. Unannounced. Unwelcome.

Like a little old lady, I do not travel farther than a few steps away from the nearest box of tissues.  I look around this doctor’s examination room and can not believe that there is not one box of Kleenex any where.  I gingerly maneuver a little wad of tissue I have stuffed in my jeans pocket.  Still damp and falling apart.  I am using this to dab my eyes when Dr. K enters.

We say our usual hellos.  She does ask how Trevor is doing and smiles, but we skip the usual hugs.  I  lift my shirt so Dr. K can take a look at her piece of art, a left boob disfigured by cancer and re-designed by her radiation therapy.  Burned by radiation. She looks up to see my tears, she rubs my arm and pats my hand. There is a look of guilt in her eyes.

“Oh, I am not crying,” I tell her as I try to find a dry spot on my wad of Kleenex with one hand as I hold up my shirt with the other, “it is just the chemo.” Pieces of tissue have stuck to my face. I can see a piece on the one eye lash left after the second round of going bald.

Dr. K brushes off the tiny flecks of tissue still stuck to my cheek, “Oh, Lori,” she does a little tsk tsk with her tongue, “we sure put you through it, didn’t we?” She tells me to go ahead and pull my shirt back down while she goes to get Dr. L. “I would like her to see this if you don’t mind?”

At this point in time, baring my breasts for another nurse or doctor is no longer an issue. Much in the way my modesty flew out the window with each baby I had nursed. My first born and I would make a comical scene with the baby blanket over my head so that we could privately nurse in public.  One big nursing tent.  By the time baby number five, the last, came along, I was whipping up my shirt, exposing everything, to nurse while standing in the grocery store check-out line. I wasn’t about to lose my place in line.  Not after shopping with five kids.  Who cares if anyone saw my breast.

So, what’s one more doctor that I have yet to meet asking me to lift my shirt?

I fiddle with the thread that is fraying at the bottom of my shirt. It is old and loose. Like a favorite pajama top. It feels good. Worn. A bare film over my bare breasts. The burn is too bad for anything tight or for any bra wearing. I look down at my hands and see new nail growth. In spite of the radiation burn, there is new growth. In the aftermath of a forest fire, a tiny tree begins to bud. My growing nail buds feel like this. I am happy as Spring to see them, even though I’ve already learned to do without fingernails, hiding paperclips in several inconspicuous places around the house. The paperclips do the duty of fingernails.  I grab the paper clip I have attached with a leather strap to my purse.

I’ll just use this to clean under my new nails while I wait.

The two ladies enter. Two radiologists. Dr. K enters first with her little legs and short black hair curling around her face exposing the red dot on her third eye. Everything about her says doctor. She even wears the white coat and stethoscope.  Dr. L towers over Dr. K.  Nothing about this woman spells doctor.  Her loud German or Russian accent, I can not tell the difference, booms over the top of Dr. K’s head.  She wears loud, attention grabbing clothes. Tight skirt over gray, mesh stockings, high heels, flowery blouse and bright yellow cardigan sweater.  Something seen in a fancy dress shop, not in a professional office.  Certainly not the usual doctor’s attire.  Her blond hair, done up in an old fashioned French twist adds to her stature.  Clearly, Dr. L is the boss of this place.

I am lifting my shirt before they even close the door.

I watch eyes widen. They both take a step back. In unison.  A practiced dance step. Only, both doctors agree this is something new for them. “You probably see this all of the time, right?” I am looking for confirmation that my burn is not really so bad.  Dr. L is slowly shaking her head back and forth.  A sort of disbelief gesture. Dr. K answers for them both,

“No. This is the worst I have seen in my career. In in in, both of our careers?” She looks to Dr. L for an answer.

Dr. L just keeps shaking her head back and forth as if in a trance, “oh, oh, right, right.” She looks to Dr. K, eyes still wide. “Aquaphor, she should be putting Aquaphor on this.” They both nod. I say I am. We stare at each other a bit longer.  Dr. L watches tears stream down my face as I dab at them with the same wet spit-wad of a tissue.  “She is not crying”.  Dr. K explains to Dr. L, “it is just the chemo.”  She looks back at me as she is turning Dr. L around, “you can put your shirt down.”  They scurry out of the small room like a couple of kids who suddenly realize that playing with matches actually does start fires.

“Put the wet stuff on the hot stuff…..”

Dr. K comes back in. Alone this time. “As soon as we let this rest a bit,” she is sitting in her rolling chair now and facing me. Close. Dr. K grimaces, “We will need to schedule a few more rounds.” She winces, “Boosters.” I am not alarmed, but I ask, “is this because the first round did not work?” I do not know why I am asking. I know with my ‘Knowing like a feather perched in my soul’, that it did, in fact, work.

I know that the cancer is gone.

“No, no. This is something that I had planned. Although, I did not plan on burning you quite so bad.” I think I hear her say ‘damn chemo’ under her breath. But, I may have just imagined that part.

I know I am not imagining the sadness in her eyes.

I tell Dr. K that it is okay. It is not so bad. This stuff passes. I show her my new nails beginning to stretch up the nubs of my fingers. I pull back my hat and rub my head for her to see the new sprouts of coarse little hair buds. It all passes. We are on a journey and this is just a bumpy part of the road.

This new hair growth is different than the first time it started growing back. This time, I don’t have fear that cancer is sprouting along with them. It’s just not there.

I tell Dr. K that it has all been worth it because the cancer is gone. And, that she can do another ‘booster’ round if it makes her feel better. “don’t worry,” I say as we exit the examination room together, “the cancer is gone but, I will just keep coming so that you can keep your job.”  We both laugh.

But, I actually mean it.

Watching my boys so happy to be performing is the most healing remedy. Think I will go get a Legoland shopper’s pass.  A free pass into the park for one hour of shopping.  And,  I’ll just peek at another Big Test show.

Maybe even shop for a new coffee mug for Dr. K while I am there.

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The youngest brother giving the oldest brother a difficult time! Nothing new.
Maybe this isn’t really acting after all!!!!

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Trevor takes a turn at playing Vern. Chris as Chief and Michael as Chef Basil.
Three clowns for sure.

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They ‘wet his pants’.                 I am thinking I would not mind getting the wet stuff on the hot stuff this way right now!

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My boys. My super heroes.
This is how I heal.
Laughing.

Hope is a thing…………

April 11, 2012

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Let Hope Fly

Hope is the thing with feathers

That perches in the soul

And sings the tune without the words

And never stops at all.

~Emily Dickinson

“That perches in my soul”.  I love this line.  There is a Knowing that perches in all of our souls.  It may be as light as a feather. And, maybe that is why we sometimes have trouble listening to this Knowing.  But, it is there.  Singing.

This is how I birthed and how we have raised our children.

Listening to this ‘Knowing’ in my soul, rather than what society was telling me.  It is why we ended up home-birthing and home-schooling. It is what keeps me calm and gives me trust.  Hope when one of the kids appeared to not meet the proper criteria on the scale of expectation created by society.  It is the thing that perches in my soul.  Light as a feather.  I listen.

Maybe this is how I am healing from stage four breast cancer now.

Well, this along with the chemo and radiation that have my whole upper left torso completely burned and blistering. And, along with the juicing and raw foods. Those delicious colorful leafy healing foods. And, of course, along with my guides and angels.

I miss Michelle. An angel on this sweet Earth.  She has already been gone for nearly two months.  Our phone calls are better now.  We are past the first month of those dreadful skype calls.  The calls that came everyday with fears and tears.  Calls where I not only listened to her but could see her misery. Her dismay in finding herself in a foreign country. Alone in a studio apartment no bigger than the bedroom she so recently left empty in my home. Alone. She cried everyday for the first two weeks. “I wish Trevor made it into the show too.  He was so close. One of the top three.  Why didn’t he make it too?”  She would get the words out through sobs, “then, he would be here with me now.”

“I just want to come home.”

Skyping makes these far more than mere words. It’s one thing as a mother to just hear these words over the phone. Skype lets me see her. I am not sure I like such modern technology.  I am miserable too.

And I can’t wipe away the tears that I see streaming her face.

The song in my soul tells me she is doing the right thing.  The song without words.  I just know.

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This is Knowing, with feathers, who perches in my soul.

 “No.” I tell her. “This is a good thing. Hard. But good.” Trevor did not get the show in Japan. “And, though that seemed bad at the time, he ended up getting Cirque de la Mer again, stunt performing in the San Diego Opera-Moby Dick, and tramp wall show at the SD Zoo.  These are all great for Trevor.”  I remind Michelley of the Taoist story her daddy used to tell them all whenever they thought something bad just happened to us.  The story of the old farmer whose only response to any news, good or bad, was the same;

“We shall see.”

We thought it was bad, sad, that Michelley made it but Trevor did not.  Especially since he was the one who researched the audition and thought about doing that show for over a year.  We forgot to say, “we shall see.”  Trevor is in a far better place right now and could not have done this if he was in Japan.  “Besides,” I tell her, “something tells me that you need this experience on your own.”  I see myself in the little screen that sits over the top of her beautiful face on my laptop screen.

I try not to keep looking at myself when I talk to her over skype.

It makes me so self conscious. I check my teeth for spinach like I am looking into a mirror. She mimics me and laughs. Skyping will take some getting used to.  It will need a new set of proper etiquette, yet to be written. I try to stay focused on the conversation but it’s so hard to do.  It’s like talking to someone who has their back to a mirror and all I see is myself. “Besides, this experience is going to be life-changing for you. It is exactly the right thing for you at the right time. You will be fine.”

She says, “We shall see.”

I say these last four words with confidence. Yet, underneath this air of confidence the words are whispered more as a prayer of hope. Oh dear God I hope she will be fine. Let her be fine. During those tearful conversations I would find myself wondering……

How long will it take me to swim across the ocean?

I am just on the other side of the Pacific. Almost a direct line to Osaka. I look across my horizon when I stand on the pier. I like knowing she is just beyond this view. Fine. Doing fine. Momo used to tell the kids that whenever she missed them when she was back home in Florida, all she had to do was look up to the moon and the stars and know that they (the kids) were under the same big glow. “I see the moon, and the moon sees me…..”

I would say this to Michelley now, but, I know she would think I am being corny.  Already, she is doing fine.  She sends me a photo of herself.  Performing in the rain.  Smiling in the rain.

She is fine.288138_293371067428810_1621713322_o

I not only miss her, I am in a little panic. Did I teach her enough? The important stuff. Like, how to cook a meal, how to wash clothes, how not to get kidnapped. I know we taught her how to do gymnastics and how to brush her teeth, I remember doing that.

We just get so freaking busy living life. And in my defense, there were five of them.  The only thing I know for sure that I covered for each one of them was where babies come from.  I only know this, because to this day, I still ask if I had had this talk with him or her yet. I always worried that I might have told one child twice and then left one of them out of this little fact of life.

But, I never ask them if I covered any other important ‘how to live life’ topics.  Well, except, maybe to tell them that it was okay to be gay.  Another repetitive lesson.  I wanted them to be sure that if they happened to be gay, I would still love them to the moon and back.  So, this question, I know for sure, I asked each one of them.  Often.  Hundreds of times over their young lifetime.  Why didn’t I make sure I taught them other life skills?  I wish I had done a check list for raising my kids right. Maybe I should not have just listened to that thing with feathers perching on my soul, singing without words.  A song with words may have been a wiser ‘Knowing’.  Michelley’s not just down the road a piece so when she makes a mistake she can run home and lick her wounds. She is 6078.49 nautical miles away.

That is one big ocean between us.

I dig deep to my ‘Knowing’ with feathers.  I find Trust is also a thing. Perching right there beside Knowing and Hope.   I have to just trust at this point. Trust that Greg and I have done enough in raising her. Trust that she is part of this big beautiful universe. A universe that knows exactly what is right for her. Trust that she has guiding angels. I know that she listens. So, now I just have to trust.

Michelley sends me a photo of a meal she just made for herself.  She thinks it is chicken.  Shopping in Japan without knowing how to read the language can be a little surprising.  I see spinach and tomatoes on her plate and breathe a sigh of relief.  It is not a meal made from Doritos and Top Ramen.

I just hope she knows that poultry should not be eaten raw.

To name a hero…………

April 6, 2012

Sometimes super heroes have capes. Sometimes super heroes have webs shoot  from the palms of their hands. One thing that all heroes seem to have in common is perfect timing. They show up at just the right moment. The crucial minute that determines life or death. The moment that lives between despair and hope.

I had always hoped for a knight in shining armor. Someone to save me from my stupid mistakes, my poor decisions, my lack. A knight to come along with a bag of gold. Well, a bag of dollar bills, actually. To pay off my debts, buy me a house, a car, and a sewing machine. I like sewing.

A knight would fix everything that I had screwed up. Things that I now see weren’t ever really screwed up. It was just scenarios I had created by focusing on lack. Then, pulling on pity strings and waiting for that dang knight to show.cropped-13.jpg I thought I was defeated. All of this pales in the shadow of a cancer diagnosis. A true wake up call. And of all times, I stopped wanting pity. No longer expecting a knight in shining armor. Probably when I need one the most. This was serious. I knew that I needed to make changes. But, occasionally, I’d still look up to see if a white knight was on the horizon. What I did not know is that I would get a hero.

And, that sometimes, a hero can be a hero even before he or she is born.

We just found out. It’s a boy. This baby boy who had the perfect timing of a true hero. Who stands on that thin thread between despair and hope, balancing like a practiced tight-rope walker, fists on hips, red cape bellowing in the wind. This little hero who puts a stiff arm up to the side of despair and takes my hand into hope. This little boy, yet to be born, has no idea what a true hero he is with just being.

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Maybe we all are true heroes. If only we could just be. Just be. Nothing more. Just be who we are. Stop asking what do you want to be when you grow up. Start being. That’s enough. The people that I love the most, I love because of who they are, not because of what they have done. And, in this moment, I am finally realizing how this unborn child has already taught me this most important lesson. I hadn’t painted since high school.  But, I wanted to paint a little hero series for him.  Conceived at the most perfect time.  He is a hero just by being born.

A perfect little hero.

photophoto (2)His name will be Grayson. Grayson Chance. But, we are not to tell anyone yet. Cassie doesn’t want to be influenced by other people’s opinions. This is his name. And that is that.

I hope I can keep my mouth shut.

There is meaning behind each name. Chance, because it takes willingness and courage to take chances, to take risks and to not be afraid of failing. Failure is necessary and part of succeeding. The more you chance, the more chance you will no longer fear failure. The more chance you will succeed. Cassie picked the middle name of Chance for this reason. Justin picked Grayson for other reasons.

Justin is a life-long fan of Super Heroes. Particularly, Batman. And, Justin chose a name that is strong and meaningful.  Grayson.

I looked it up in Wikipedia: “Richard John “Dick” Grayson is just a fictional character, a superhero in the DC Comics. He was the youngest in a family of acrobats known as the “Flying Graysons”. Dick watches the mafia boss kill his parents in order to extort money from the circus that employed them. Batman takes him in as his legal ward, and later, Dick becomes his partner~Robin. He is the one that Batman cares about the most.”  So, there it is.  A little hero is named.  Grayson.

Grayson Chance. My own personal super hero.

Cassie decides we should prepare the nursery.  For my birthday.  Which, happens to be this Sunday. She wants me to paint a mural.  I know exactly what I want to do for it. I’ll go up on the train at six thirty tomorrow morning. I just have to time the painting so I am done by Sunday. To be back by Monday so I don’t miss radiation. And chemo. The duo that is setting me on fire. I am watching Shirley Maclaine and Jack Lemmon on the lobby tv at the radiation center. This might be another day that I stay to watch the ending. A new, fun habit. I think I am the only patient to take their warm welcome to heart. Maybe wearing out the welcome mat a bit.

“Lori Rubino, cooooome oooooon dowwwwnnnnn!” It’s Emil. He’s on the intercom. There is a camera poised on the lobby. He sees me watching tv, sipping coffee from their paper cups. Once I slide my card upon arrival, my information scans into the system and let’s the techs in the back know I have arrived. Still, I like to go to the clipboard and also sign in. This way I can say hello to Sharrone at the front desk. Then, I wait to be called back.

Emil turns it into a game show.

After going to the small locker room, hanging my clothes and slipping into the hospital robe, I wait again on the little chair by the locker room. This is when Emil physically comes to get me. And, usually in some surprising way. Today, he is waving a sticky note in the entrance with a smiley face. My flag to “Go”. I walk in to the treatment room to see birthday signs hanging from the robot arm.  “Happy Birthday Grandma Lori.”  I hop onto the cold metal, the techs get my spongy thing, the ice-cold sponge pack to fit across the area we radiate. It intensifies the radiation to the area. There is no getting used to this part. I squeak every single time it hits my skin. Particularly now that the skin is burned. Today, Tiffany pauses before laying the sponge. They all come to take a look.

This burn is getting bad.  Really really bad.

Emil wonders how many more they are going to be able to do. Dr. K is out so they call in one of the other doctors. I’ve never seen him. He tells me to go get Aquaphor. That’s all. We continue. We talk as we go through the routine. The, now, rote routine. I lay on the metal, someone puts the triangle pillow under my knees, someone else puts a warm blanket over my legs while someone else puts the cold sponge on me. Emil laughs at my reaction. Every time. They position things, check placements. I grab the handle bars and wiggle around several times. Always saying, “wait…wait..there…no…wait..okay….. now….yes…okay….oh crap….my nose…..wait….okay….now”. We carry  on a conversation about each others lives all the while.

I think of how Momo would.

“So, how is Cassie?” Tiffany always asks. The memory of the pain of childbearing still so recent in her mind. She usually asks about the pregnancy. I tell them it’s a boy. Emil wants to know if they have a name for him yet?

“Grayson Chance.” Oh my God. It’s the first time anyone has asked and I didn’t even hesitate. Oh well. I figure they will never get to meet Cassie. So, they can’t try to influence her.

“Grayson?” Emil fiddles with the remote control adjusting my bed alignment with the red light lines across my body. “The Flying Graysons,” he says and nods with approval.

“You know about the Flying Graysons?” I am amazed.

“Well, duh.” That’s it. That’s his answer. “Grayson is a good name. A strong name. A little super hero.”

‘Oh, Emil’, I think, ‘you know it.’  He turns up my music, hits the lights and the switch to close the door.  Last one out he laughs, “better than calling him Robin!”

I don’t even watch my handsome dance partner, the robot arm, this time as he works through the maneuvers of our dance number. As I usually do to make sure he doesn’t miss a beat. This time, I close my eyes and think about the nursery mural I am going to paint.

I think about how grateful I am for the little heroes in our world.

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She paints the crib.
I paint the wall.
She sings while we work.


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A little message for my little hero;
Grayson’s Grandma loves Grayson H.

I Am the Fourth Witch of Eastwick…….

November 29, 2011

I look in the mirror first thing this morning and see an old woman with drool marks on the corners of her mouth.  The chemo makes me drool, even in the day.  Sizzling deep crevices, creating jowls.  Chemo is drying my skin.  I look ninety years old today.

Maybe one-hundred.

I climb back into bed.  It’s early.  My blankets are still warm.  Greg still there, warm like my blankets.  Unlike all other mornings when he is either up at the crack of dawn peddling his bike down some path like a five year old, or up making me do yoga in the dark.

Sometimes he is awake and waiting for me.

Even though I don’t feel pretty, today my shirt comes off.  The lump already subsiding so very quickly. According to Dr. B, it is down nearly sixty percent.

Today I am feeling brave and full of life.  Who cares what my face looks like.

Even my hat comes off. A free and full me.

Greg makes love to a bald chic with a dried out face.  I almost laugh out loud at the thought of this.  But there are two full breasts (and, I use this term; full, quite loosely, as they never were much to begin with).

They don’t look too much different from each other right now.  I’ve still got them. For now.

And, I feel normal.

Not Brigitte Bardot-like, but, normal.

Until I am up for the day and take another look at my face.

Yesterday, I marveled over how I didn’t need any naps for three days in a row. I feel normal. High energy. Back to my old self, doing a million different things at once. Not really accomplishing anything significant, but, I am busy. Then, someone mentioned how November is almost over already. It hit me. That only means that this Friday it’s December 2nd. Time for my fourth chemo treatment.

It takes the wind out of my newly spread wings.  Friday, I get knocked down a few notches again.

I get my wings clipped.

Why am I complaining? It’s so wrong. Chemo is helping. I know I shouldn’t complain.  But I want to.  And do.   I should be celebrating that I get to go in for more. But, I look at my fingernails, as I type this.

They feel strange. Have felt strange all week. Today, I see discoloring under a couple of nails, like a new bruise, just beginning. My toenails are doing the same.  Will I lose these too?

Yup. I looked it up.  Fingernails and toenails are part of those fast growing cells.  Like my hair, they will soon be history. I don’t want this anymore.  I like feeling normal.  Can’t we be done now?  Enough chemicals.

Plus, my skin has had a strange reaction this last time.  I have a rash all over.  I didn’t get Benadryl before the last treatment to help with any possible allergic reactions.

“You’re doing great, we don’t need it this time.”

I am asking for a double dose Friday. After a treatment without it, I’ve felt like one of the characters in the movie Witches of Eastwick, with Cher, Susan Sarandon, Michelle Pfeiffer. The one where their skin, hair and random body parts keep falling off at inappropriate times.

My itchy rash randomly begins to bleed. Unbeknownst to me. I don’t feel it when it bleeds.  I come home from lunch with a friend to find the sleeve of my white shirt is blotched in blood stains.

I run out for a few groceries.  As I stand before the cashier in the store, I feel my face begin to dry up even more.  I feel it pulling into itself. When I get back into my car and look in the rear view mirror, I am mortified to see an ancient lady staring back at me, wrinkles so dry and deep across the entire face that they pull heavily on the mouth making me look sad and angry. Disapproving.

This makes me cry when I get home to show Greg. I don’t want to look this way. I will try to keep a half smile on my face, even when I’m alone, so that these wrinkles can not re-model my face into an angry old woman.

I am not angry.

I am the fourth witch of Eastwick.

Friday is Chemo Number Four.