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.

Rocking down the isle……

February 3, 2012

Here I am again.  Reclining.  Sinking, a not very sick body, into the rich brown leather of my doctor’s chair.  It’s the first break I have had in two months.  Though, it is forced upon me via Herceptin dripping into my veins as I write this.

Still, it is a welcome break.

Today is the first time I will get Herceptin only.  Goodbye Caroplatin and Taxotere.  No more of your harsh behavior.  Your wreaking havoc.

Already, I see a problem with dropping these two drugs from my chemo treatment plan. With the mixture of receiving all three drugs I could easily spend the six hours it took to drip.  Now, with just Herceptin, I am lucky to get just an hour in this chair.

I will miss the big bag of ‘to-do’s’ that usually accompany me.  Moreso, I will miss my chair-side companion.  Now that the worst is over in chemo-land, it doesn’t make sense to force someone to come along for such a short time in the chairs.  Maybe this is good.  Maybe it is time I use my chair experience to reflect.  Alone.

So much has happened in this past month.  I couldn’t even keep up with keeping a journal. So very much like the day Christopher Alan Rubino was born.  That same afternoon, still in the hospital with a sleeping baby in my arms, I opened my newly purchased journal.  The one I bought just for this purpose, wanting to capture and record the remarkable experience of birthing and parenting.  I wrote,  “I want to write.”  That’s it.  That is all that was ever written in that most important journal.

I want to write.

Instead, I believe I fell asleep.  And, then, I started living as a mommy.  Full swing.  For twenty-some years that journal stayed empty.  Except for that one sentence of course.

This past month feels the same.  My list has finally bowled me over.  I am already asking Nurse Pam if I can just stay past the last drip from my IV bag. My bag is already half empty and this recliner feels way too good.  So does writing again.  Writing.

As necessary as the drugs.

Mom and Dad had arrived for a second visit from Florida with my sisters, Chari and Pam. They came for the wedding and to help.  We painted the glass jars that held candles throughout the wedding garden and clubhouse, with little hearts and love quotes. I think I use every event and holiday as an excuse to do crafts.  I also made the cake topper—in honor of Justin’s favorite super hero…417871_10150643320993417_80423341_n

Cassie and Justin Wedding 012

Cassie and Justin Wedding 013

I am happiest when doing crafty things with our hands, while sitting around my dining table.  Conversations seem more free and natural this way.  I am loving this time with them.

Chari

Chari, like Mom, works seriously and diligently.

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Mom concentrates.

of course, Pam always thinks Dad is funny!

of course, Pam always thinks Dad is funny!


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We finally took away the jars from Dad. He was doing his own thing on them, not entirely wedding appropriate.

Also, during this past month among all of the other normal wedding preparations, we had a bridal shower, Michael’s call-backs for Hook and I’ve had my first consultation for radiation. I love Dr. K. We talked about our families, children, and the importance of a good coffee mug.  A mug with just the right weight and the right color or design.  This lady is smart.

We talked about Trevor’s break up with Shannon and of Dr. K’s daughter, nearly the same age as Trevor, of how, like Trevor, all she really wants is to have a real and loving relationship.  We talked about Cassie and how the wedding is just five days away.  We talked about Michael and how theatre is saving him.

January has been a good month.  Michael got Hook.

And, Cassie got hitched.  The wedding happened.

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Cassie and Justin rocked it.

Literally.

This was no ordinary walk down the isle.  Well, this is no ordinary couple.  I guess it’s safe to say that this is not an ordinary family, either.  “Besides,” Cassie said as she rubbed her belly and kissed my cheek, “there is so much to celebrate”.

She decides that we will be rocking  down the isle.

No, typical did not fit into Cassie’s desires for this wedding day.  Although, she did draw the line and refused to let Justin enter the way he really wanted to; dropping Ninja style from out of the tree over-hanging the altar.

The three brothers kicked it off with a choreographed dance number.

The Rubino Brothers

The Rubino Brothers

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Yup.  The mother of the bride!

Yup. The mother of the bride!

Then, the wedding party danced in.

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Michelle in the Maid of Honor’s dress that she begged Cassie to allow her to get…..more fitting to her personal style!
Cassie made sure that everybody was happy at this wedding!!!



Here Comes the Bride!

Here Comes the Bride!

Her brothers danced back in order to “walk” Cassie down the isle.  As the Reverend Dr. Greg Rubino Daddy was Officiating the ceremony, so she didn’t have daddy walk her.  He and Groom Justin waited at the other end.

I would love to have seen the two of them rock down the isle.

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Justin's nephews, Honey and Cooper bring the rings on teddy bears.

Justin’s nephews, Honey and Cooper bring the rings on puppy dogs….with the agreement that if they bring rings, they get to keep the puppies afterwards.

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The Halliwells

The Halliwells

Nurse Pam unhooks my IV from the port in my chest.  She sees my computer open on my lap.  My tea is still steaming from the cup beside me.  Pam looks around the chemo room, it’s nearly empty, “Go ahead,” she smiles at me, “stay as long as you’d like.”

I think I’ll just close the laptop and close my eyes, too.

Just for a little while.

Rich like this…………

November 28, 2011

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It is raining.  A morning rain.  As if the morning can’t be fresh enough on it’s own.

I watch the leaves grow deeper and richer in green as the rain drops glide along their folds on the tree that is so close to my balcony I think one day I will step off the ledge and find myself in a favorite childhood place.

The top of a tree.

I could climb the tallest pine tree in the cemetery on Christie Street.  Not that the cemetery had anything to do with the tallest tree on the street.  I did not care that it was in a cemetery.  The old graves didn’t scare me.  During the day.  The tree was far too inviting and intriguing than to worry about where it’s roots might be.

Besides, this old pine sat straight up on the biggest hill on Christie Street.  Majestic.

It was a step ladder tree giving me her branches at perfect intervals straight to the top. And, this became my favorite place to be.  I didn’t care that I’d collect sap in my hair on the way up.  The quiet breeze swaying me in the smaller branches of the tree top, made it all worth it.

I don’t even remember now what I could see from there.  But I do remember the smell of fresh pine.  It was Christmas in my tree top, even if it was the middle of summer.   I probably don’t remember what I was seeing, because I am quite sure I kept my eyes closed and only felt my arms around the narrow top branch.  I was part of this magnificent tree.

And, I was rich.

Cassie and I, taking a refreshment break from hiking up Big Bear with the family.

Cassie and I, on a refreshment break while hiking Big Bear with the family. (Before diagnosis–Before pregnancy)

I am rich like this today.

The rain drops trickle off the leaves that exude their greenest greens when they are wet. Small droplets dancing, leaping, twirling onto my own balcony garden.  I started growing wheat grass for juicing.  And, tomatoes in one of those upside down vegetable growers Cassie bought for me.  A ten dollar item at Rite Aid Drug Store, worth a million.

Cassie calls on her way to work.  Every day.  Today, she wants to sleep in.  To stay in bed and listen to the rain.  But, she can’t.  She is casting for a popular Chef’s show.

First, we have to talk about how horrible she feels.  Pregnancy is not at all the way she heard (from me) that it is supposed to be.  She is sick.  All day.  Plus she has to still go in to work long, very long, hours.  Productions don’t seem to care if you are pregnant and sick.

Chemo and pregnancy are so similar.  We laugh at how we both are experiencing “side effects”.  We are both so exhausted throughout the day.  “Yes,” I tell her, “and, we both will have a good ending, too, when we each get to our ninth month.”  My chemo is scheduled to end right around her due date.  May 23, 2012.

I intend to be done with cancer by then.

We decide to make a list of how similar our side effects are. There’s the nauseousness. Except, for me, no vomiting.  I am not that sick.  We have an unusual moment for us when on the phone.  There is a long pause.  Quiet.

Okay.  We are not experiencing the same things at all.  She hasn’t lost hair, all finger and toe nails as I have.  And, I do not have to try to work while feeling like an alien.

Cassie is convinced she has it far worse than me.  I am getting thinner, more fit.  She is getting fatter and out of shape.  Cassie hates fat.

Maybe she is right.  There are times when I just don’t want to get out of bed.  It would be so easy to stay there huddled under an oversize comforter, fuzzy bathrobe and my head on my favorite flowery, frilly pillow shams.  Feeling sorry for myself.  For the most part, I just don’t have the horrible side effects we read so much about.

But, there are strange and rather inconvenient side effects I hadn’t read about.  I wasn’t expecting.

Losing finger and toe nails, for one.  And, the teary eyes.  My eyes have started tearing at random moments throughout the day.  Pooling tears.  I am not crying, but my face is streaked with tears as if I was sobbing.  So I pack several travel tissue packets.

I have also created a “finger nail”.  Which is just a large paper clip attached to a long thin leather strap that I wear around my neck for the number of times I find I can’t function without a finger nail.

That number reaches one million.  Each day.

I tell Cassie we can do this.  We can get through our ‘side effects’.  I have a  total of six treatments of Taxotere, Carboplatin and Herceptin scheduled.  And, then just Herceptin until May.  And, for now, things are going so well.  Surprisingly well.  There is no longer talk of surgery.  We may even put a hold on radiation.  We may just ride out on Herceptin.

No mastectomy.

Dr. B. says he doesn’t see enough data to show him that this would be a good choice for me.  I like this lack of data.  I also think Dr. B has not expected such good results for me.  He told me to train like an athlete.  Which, I have.  He just couldn’t advise me nutritionally, or about herbs.  He tells me not to even ask.  He doesn’t know.  I think he doesn’t believe food is medicine.

I like this other doctor’s philosophy better. Some Ancient Greek physician named Hippocrates.

Hippocrates – “Let food be thy medicine and medicine be thy food

Organic.Fresh.Delicious.

Organic.
Fresh.
Delicious.
Nature’s medicine.

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Part of my morning juice.

“Hippocrates is credited with being the first person to believe that diseases were caused naturally, not because of superstition and gods. Hippocrates was credited by the disciples of Pythagoras of allying philosophy and medicine.[16] He separated the discipline of medicine from religion, believing and arguing that disease was not a punishment inflicted by the gods but rather the product of environmental factors, diet, and living habits.”–Wikipedia

I have been religiously practicing Kundalini yoga every day, and riding my bike in the beautiful ocean breezes.  Greg juices carrots with other richly green and leafy veggies for me every morning.  Evidently, carrots are great little warriors.  The Ninja vegetable. Except, they wear orange and not black.  But, they are sneaky little veggies.

Apparently, cancer likes the sugar that the carrots deliver.  And, while the sugar reels in the cancer cells, “welcome to the feast, fellows!”, the beta carotene follows up with the attack on cancer cells.  “Kaia!” (kee-eye).

This, of course, is my child-like vision of what I think I understand in Greg’s nutritional research for me.  Juice it up, baby.  I am convinced this is helping me.  And, even if it is not what is healing me, saving me, then, at the very least I know it is helping me to feel good.  If it is the chemo doing the work on the cancer cells, that’s okay too.  I don’t care what works, as long as it is working like it is.  The food and exercise make me feel good along the way.  And already, I am stronger than I ever was coaching gymnastics.

We are also learning about the benefits of juicing wheat grass.

Growing my own on the balcony is a spiritual benefit I did not plan.  Getting black, moist soil under my finger nails, smelling the sweet earth as I pull handfuls out of the Organic Soil bag makes me feel alive and well.  I am gardening on a two and a half foot wide balcony and feeling like a farmer of a million acres.

I am rich like this.

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The spiritual part comes when I see green sprouts popping out of this rich earthy soil.  I think, “Oh, hello God.”  To feel energy in the palms of my hands as I brush them over the tops of the new green grass.  Gently feeling green.  To realize how the right combinations of nature produce food rich in nourishment.  To do this work myself, nourishes my soul.

My left breast looks nearly it’s normal self. Except, now where a huge lump used to protrude screaming red and angry, it is concave a bit.  Still red.  Not angry.  The nipple still does change daily.  I know there is cancer activity here. Sometimes it pulls inward and sometimes it cracks open.  Exposed.  Sometimes, it looks perfectly normal.  Lumps are gone under my arms.

I tell Cassie she should maybe try juicing.

I only hear gagging sounds coming over the phone.  She’s going to go be sick now.

We hang up.

It’s okay. She will find her own way.  This baby will be fine.  My little hero.

I notice a snail sliding across the brim of my terracotta planter.  I say, “Well, hello, Mr. Snail” as he peeks his head out.  I think I will sit here a while longer, sip my tea and just watch this snail.

I can not wait for this grandchild of mine to get here.  I want to see this child’s eyes watching the rain and how the leaves glisten.  I want to hear this child’s voice say hello to the snail.

I want to watch as my grandchild climbs trees.  Getting all sappy hair and smelling like pine.  To know the gentle swaying and the quiet breezes way up high in the sky.

To feel majestic in the top of trees.

My wish for this grandchild is to be rich like this.

Sticks and Stones–Words and Wolves………….

Laura Roslin   -Battlestar Galatica- Season 3 Episode 19-Crossroad

November 27, 2011

We recently started watching Battlestar Galatica, our next series to obsess over.

I am thinking that this series choice is a mistake.  The main star just got diagnosed with breast cancer. Great. This is just great.  Watching makes it increasingly more difficult for me to not feed energy and fear to my own breast cancer.

I believe the words we use in our self talk make all of the difference in the world between good and bad, health and well, death.  I think words create the world we choose to live in.

We get our dinner plates with our mounds of salad and park ourselves in front of the computer screen and our friend, Netflix.  It hasn’t taken us long to get to Season 3.  I am really considering feigning dislike for the series and convincing Greg to choose something else.  I don’t want to see Madam President, Laura Roslin, lose her hair (of which, I am quite astounded over. This show takes place one hundred fifty thousand years in the future—really? No one figures out a way to cure cancer and do without chemo and hair loss in a hundred fifty thousand years??)

That’s a little disappointing.

We are up to episode 19.  And, this is WHY we are watching this show at this particular time. My angels have a message for me.

Karen: Madam President, how long do you have to live?
President Roslin: How long do you have to live, Karen?

Who really knows how long they have to live?  Just because there is a cancer diagnosis does not mean that I will not live longer than a healthy person who steps off the curb and gets accidentally hit by a bus. Sorry. But, this does happen. Every day. Somewhere.

I decide to relax. We go when we are supposed to go.

So. I will live while I am living. Really live.

Thank you Laura Roslin. Even though you are just a character in a tv episode. I needed to hear these words of yours.  My angel’s words. Important words.

“Stick and stones will break your bones, but words can never hurt you.”

Oh, I said this one a lot growing up in my neighborhood that was over-run by neighbor kids and no supervisors. Except for the occasional bug-eyed mom peeking out from behind a curtained window.

Only peeking out the window when one of us kids was screaming sticks and stones at the top of our lungs.

My lungs.

Now, I beg to differ with these words. Words can hurt. Words can kill. I am careful with my words now.  I believe we help to create, manifest, the worlds we live in with our thoughts. With the words we choose to allow into our heads.  Repeating.  Digging deep grooves.

However, as a kid, I used the sticks and stones phrase everyday. There was a lot of name calling in my childhood. In those days, kids were all kicked out of the house early in the day. Sent out to play, it did not matter what, we did not take toys out with us, except for a box of old dance recital costumes, we had to figure out how to play with our “imaginations”. That left a lot of room for name calling.

Especially when I was adamant about being the president of the club, or the manager of the show.

And, this went on until the street lamps turned on. Our cue that it was time to go in. Unless, we heard a whistle before street lamps. That meant your dad was home, dinner was on the table and you better high tail it home before he has to whistle twice.

Each dad had his own unique whistle call. My dad’s was one long beginning, that first went up in octaves and swooped down to come back up with a short ending. I later turned this into a vocal “boooooo-whoop” as a family call. An idea I stole from a girl’s camp Greg and I worked for one summer in the mountains.

If ever we’d lose sight of a group of campers while hiking, the camp had a vocal whistle call, since not every counselor nor kid could produce the loud whistle our fathers could do back in 1963. Counselors would call out a whooping ‘whistle’, and the wandering campers would do the return whoop. Voices echoing through the trees. We would know they were near. All was good.

Once Greg and I started hiking with our own children, I transformed my dad’s whistle into our own vocal family call. Much needed because we had a five year old who loved to run ahead, go off the beaten path, find the highest cliff, and yell hello down there as we passed by.

My kids hate when I Booo-whoop for them now. Especially when they are in a show and I want them to know I am there among the applause and standing ovations. They prefer I just wait to meet them back stage and use my words to express how much I loved their show.

Those would be good words. There are bad words that I am careful to avoid now.

Dangerous words, like, I am; sick, ill, dying, cancer.

Words give cancer a place in the world. Fear of cancer breathes energy into the confused monster that it is.

We give a name to an ailment, put energy into thinking about it, fearing it. Name a stage of this disease and, suddenly it owns us. I know there is research out there to prove mind over matter. Even the bible talks about the power of words.

“In the beginning there was the Word. The Word was with God, and the Word was God”. The fact that the King James bible capitalizes the word Word, makes me pay attention.  Words matter.

I am not a religious girl. Even though I was dunked in the full body size baptizing pools of nearly every church within a ten mile radius in Statesville, NC during my seventeen years of raising the kids in this small Southern town.

I was on a spiritual quest.

This means, probably without exaggerating, I visited and raised my hand, because “Yes, I am here to learn more about Jesus”, thank you for asking, in at the very least a dozen different denominations. Mostly, different versions of the Baptist church. One of which, asked me to leave for nursing in the front row pew during a sermon. I didn’t realize that none of the ladies of the church heard any part of the sermon that morning. They were too distracted. Appalled. Praying for me. Upset with a baby doing “something that should be saved for the bedroom.”

“Really?” I ask.

“I am not having sex with my baby. And, I am pretty sure God didn’t invent bottles until about a hundred years ago, so nursing a baby is probably a whole lot more in tune with God’s original intention than bringing a bottle into church on Sundays.”

Maybe my words were too harsh? They didn’t invite me to fellowship that morning.

I don’t go to church anymore.

Not because of these women. I just later realized that I was visiting God on a daily basis. Doing yoga. Looking at my children. Walking in nature. I felt a part of the universe. I sensed things. I found God in every thing and everyone. Somehow, it just never felt that way inside the four walls of a church building. I find God when I write in my journals. Or, better yet, I listen to God when I write in a journal.  And, I don’t think God is a man sitting on a cloud waiting to tell me what to do.  But, I do believe there is an energy, a source, a spirit, within every living thing.

Someone recently asked me why I would want to write about my journey with cancer in a journal. She asked, “Why hold onto this negative nightmare part of your life?” She’s heard me talk about how I believe there is power in our words and thoughts, that we help to manifest that which we envision and think. Power in the words we repeat over and over again in our heads.

I tell her that writing a journal makes me pay attention. It forces me to focus on details and possible lessons that might otherwise be missed.

“Besides,” I tell her, “you have to know which wolf you are feeding.”

Confused, this gets her to raise eyebrows like they are doing their own sports-fan-like ripple. I have a well read husband. I might only half listen to his ‘sermons’, I do end up learning things like this that I would never otherwise know.

“The story of the two wolves,” I tell her like I am all that!  “The Cherokee Legend of Two Wolves?”   I tell her to look up the story.

When the grandson asks his grandfather which of the two wolves that live within him, the evil and the good, will win, the grandfather simply replies, “The one you feed.”

I write about cancer not to feed cancer. I am not using words like; fighting cancer, surviving cancer; disease, illness, poor me. Pity me. Do not pity me. Pity is a greater disease.

A word with the power of a pack of wolves.

 

I do not feed energy to this wolf.

A Thanksgiving announcement…..

November 24, 2011

Even though Trevor has his own apartment in San Diego, he is at our house.  A lot!  Still performing at Legoland in between other shows as they come along.  We live close to Lego.  Stopping over, sleeping over is a nice convenience for him.  A treat for me.

And if I can’t get him over due to his Legoland schedule, I lure him with buying sweet desert and telling him it’s in my freezer!  Today is an easy day to get a Trevor visit.  He’s a vegetarian.  Turkey in the oven could be a turn off.  However, Cassie has baked three different pies. Trevor shows up early.

We rented our condo’s community room. The guest list kept growing.  I love to gather ‘orphans’.  Even when it’s not Thanksgiving.  They will be here soon.

Trevor sends Michael out of Michelley’s room to come get me.  He, Chris and Michael are all in Michelley’s room while she pulls clothes out of her closet.  Spring cleaning in November.  Michelley is getting ready.  She received the phone call.  Universal Studios Japan hires Michelley to play “Helen” in the Water World show.

Carrah Galloway, the current ‘Helen” of Water World Japan.

She is moving to Japan.

We cry.  We laugh.  We are astounded.  Shocked.  She is not sure she wants to go.

This infuriates Trevor.  He hasn’t heard, yet.  I tell him, no answer is still an open possibility.  He doesn’t think so.  This is going to be hard.  Michelley gets the offer he wants and she’s not even sure if she is going to accept.  He is proud of her and excited for her.   She has a couple of weeks before signing contracts.  Fear is talking right now.  We know she will go.  Trevor wants us to celebrate Michelley’s achievement and not to focus on him.

“Oh well,” he says, “it’s just an audition.”  Another way of saying, you can’t win them all.  He will soon get over it and be working on his next gig.  It is also apparent that the newly formed Pending Productions company they started together may have to remain pending if they lose one of the key players.  The first documentary done.  The sixteen or so other plausible topics will truly be pending.

So, it surprises me to see Trevor is suddenly very excited.  He makes me sit down on the bed with the other three.  He has an announcement, but leaves the room so he can make an entrance.  The door opens.  Trevor walks in with a grand posture and open arm gesture.  Wait.  This needs music.

“Michelle, turn on your ipod.”  He backs out of the room again.

She can’t find her ipod.  We dig through her bed.  We find pieces of potato chips.  We find Ressie, her chihuahua, sleeping under the covers.  But, no ipod.

Trevor gives up on the music and enters making his own trumpet sounds.

“We are going to collaborate on a book!”  he beams with, yet another, Trevor idea. They had been hanging out in Michelley’s room.  Talking.  It occurred to them that each had been keeping a diary/journal about mom’s cancer diagnosis.  Everyone, except for Michael.  He is still just trying to get his head out of his gaming addiction.  Having grown up with dyslexia, not even fully reading on his own until he was a young teen, writing is still a chore for him.  They agree that they can help Michael with this so that he can participate in Trevor’s great idea.

A sibling book!  Then they each read a chapter from their individual books.  It is so interesting to hear the different perspectives on the same hospital experience.  To hear the different styles of writing.  Each so unique and captivating.

We talk about that week in the hospital.  My diagnosis.  Chris tells the kids that he is excited to see my next scans.  I am healing.  He hears that chemo usually first kills the cancer cells that were last to develop.   He is anxious to see if it is no longer in the liver.  This shocks Michelley.  It is the first she, Trevor and Michael have heard this.  Cassie isn’t here to hear this.  I am sure Michelley will be on the phone with her in a matter of seconds.

They look at Christopher in absolute shock.  He looks back at them like they are all deaf and blind.  They all look at me.  My eyes grow big, my mouth pulls closed, the corners drawn across my face like an exaggerated drawing.  I am glad to learn that it is as I had hoped.  They didn’t really listen to Dr. B. in my hospital room the night he came in and announced to the room that I had stage four cancer and he was angry.

It stays quiet until I try to assure them that it isn’t liver cancer.  Just breast cancer cells that decided to travel.

“You waited too long, didn’t you?”  Michelley can be quite matter of fact.

I know this will worry her more than she will admit.  Okay.  The kids now know.  But, I still will not tell my parent’s and sisters.  I look around the room and decide to help fold clothes while Chris explains to them.  He is surprised that none of them seem to know this fact.  He scratches his ultra curly head.  I know that it is just his keen observation and listening abilities at work.  While the others couldn’t take in so much devastating information at once, and were probably focused on how a doctor can come into a hospital room full of family and spout off with anger about a diagnosis.

“Don’t you remember?  Dr. B. told us when he gave the diagnosis.  Remember?  He said it was in her lymph nodes and on the liver.”  He touches under his arm to show the lymph nodes, just like Dr. B had done.

I run to get my medical records out of my closet.  My copies Dr. B’s office gave to me for filing disability insurance.  After seeing it all in writing I highly recommend never reading medical reports. But, I do show them Dr. B’s notes on seeing me after just twelve days out of my first chemo treatment.

“The PET/CT scan that showed a fairly large FDG avid breast mass measureing 5.3 cm with erosion to the adjacent soft tissue along with regional and distant lymphadenopathy in the left axilla, mediastinum and left internal mammary chain…..a noncalcified lung nodules measuring up to 6.9 …etc etc blah blah blah.”   I scan through the report to find this and point it out to them.

“….Lungs are clear to auscultation bilaterally.  Examination of the left breast revealed an almost 60%-70% decrease in the size of the breast mass.  This mass had been red, angry looking with invasion into the skin.  All these changes are reverted.  The mass now measures less than 2 cm. …”

We believe that the liver is one organ in the body that can completely regenerate itself.

I feel the healing.

I don’t want to think about all of this medical mumbo jumbo now.  Friends are arriving.  As we gather around the beautiful table Justin’s sister, Hannah decorated, and watch steam float up from dishes that Justin’s friend of nineteen years, Matt Swanson, our friend of eighteen years, Jessy Bell, Susan (Justin’s mom) and Cassie and I have made, all blending in the fragrant air above our heads, we lift our glasses to meet in the center.  I see my good friend, Michael Wallot and our newly ‘adopted’ Rubino brother, Jeffrey Griffith smiling.  And I feel love in the yellow glow of our candles.

After we take turns expressing gratitude around the table,  I tell them all that I hope each one here today will be with us next year.  Although, we will need to ‘skype’ Michelley Rubino around our Thanksgiving table.

She will be in Japan.

Come to my circus……….

November 16, 2011

Greg was a neighborhood carnival genius growing up in Parma, Ohio.  A true talent for ringing in the big bucks, ‘nickle and diming’ all of the naive and unassuming kids with pockets full of pennies.  Greg was the master of fun.  The creator of circus shinanigans.  A true ring leader.

I think this is why he married me.  He knew we would live like a circus and birth five of our own performers and clowns.

Michelley and Trevor audition together for Universal Studios Japan. I like this. For me, it is an affirmation that they truly believe I will heal. That cancer will be gone. Soon.

They are confident about me. That’s why they can do this. Both make it to the top three. Trevor for the Terminator Show and Michelley for the Water World Show. USJ tells them to go get a passport now. In case they end up being chosen, they will have little time to prepare for a move to Japan.

To live in Japan for a full year.

Trevor just spent this whole summer working in Cirque De La Mer at SeaWorld San Diego. He learned to do the Chinese Poles, Trapeze over the Bay, and Tramp Wall. Japan would be an exciting move for him. Trevor has long thought about traveling and living in other countries. He is ready for more big adventures.

Trevor…..Flying???

The Chinese Poles. Trevor jumping from pole to pole.

Michelley went along for the heck of it. She hasn’t really given Japan too much thought. It’s just good to get as many auditions under the belt as possible. She sort of tagged along with Trevor. She is surprised to have made it to the top three.

Universal isn’t finished with auditions. Now we wait. USJ is auditioning around the world; NY, Miami, Los Angeles, Australia, England, China, Indonesia and more. They both are pretty excited to get so far, but, Michelley doesn’t expect to go any further than this. Which, is good. She really doesn’t want to leave her boyfriend, Tanner, her family.

Me.

It will be incredibly hard for her to leave her “other home”. The Gym.

When Michelley was three I overheard her telling mom’s in our gym’s waiting area that she has “kitties and puppies at her other home. And, at this home, all of our friends come over to visit”.

She must have thought we were really popular.

Three hundred, seventy five families a week.  “Her friends.”

Michelly knows how much I am missing the gym and the girls, too.  She surprised me with a couple of videos over the past few weeks.  The “I Will Fix You” video, one of the most beautiful tear jerkers got pulled.  I guess she didn’t check into copyrights.  But, there is one to make me smile, “Be Happy Mommy” and another that she took with most of my current students and team girls at Seawinds.  Each sending me a message or showing me a skill they can do.  She knows how hard this has been for me to let go.

I don’t think she knows how much I miss coaching her. I didn’t get to coach her at my last coaching job. There were so many times at Seawind Gymnastics, I would look across the gym to see her struggling, frustrated with a skill. If she was on bars or vault, we would both  feel frustrated or cry a little tear for her dad not to be in the gym with us any longer.  If she was anywhere else, we always seemed to make eye contact. I’d give her a hand signal, or just a certain look. She’d fix the skill she was struggling with, as if all she needed was to know I was still there. And we would share a little thumbs up.

She likes watching gymnastics videos and loves to make videos about gymnastics. And, of course silly videos about and with her friends. She has a talent for making even the most stoic person come out of a shell and like a snake charmer with a flute, she lures the little child within to sing, dance or laugh with total abandonment.

Another talent of Michelley’s, video making that tells a story and rips your heart out.

I watch these videos over and over again. It’s time to let go.

Letting go is so hard. Michelley was the last of the five kids to remain under Greg’s and my coaching in the gym. Greg, always her bar, vault and tumbling coach.  Me, always her beam and floor/dance coach.

She still goes in without us now, after working all day at Legoland. But, not consistently. It’s just not the same. Dreams interrupted. Many times. Many come-backs.

My cancer diagnosis is yet, another interruption for Michelle’s gymnastics.  Her ‘other home’, the main home of her life, since she was eighteen months old, now burnt to the ground.  Her gymnastics now homeless and confused. Her life of  training, passion and dreaming now lost and wandering.

Maybe it’s meant for Japan.

I think about the real possibility that two of my kids may very well be moving to Japan in a couple of months. I am afraid I am all talk. I won’t be strong enough to let them go.

I am feeling incredibly sad.

It’s time to bring in the clowns.

Then, I remember another video Michelley made and posted all over facebook and youtube. I go back to find this. It is time for this.

Maybe I am my own clown.

Just the medicine.

Everyone can use a little bit of THIS medicine. Please click on the link below.

Try to watch without laughing.

http://www.youtube.com/watch?feature=player_embedded&v=cI0XeafYJX4

Wigging Out Over Donations…………

November 23, 2011

Kelly, my social worker at Scripps, gets $100. toward wig purchases to give to baldy’s like me.  I look through the catalog of beautiful women in wigs for days.   I circle the ones I like. Even the bright pink one.

Who knows?  Maybe I will go daring and wild.

But, probably not.

I end up shopping wisely and get two for under a hundred dollars.  They arrive on a day that Trevor is here visiting Michelle and Michael.  They’re in Michelley’s room goofing around.

Probably doing stunts on her bed.  I hear crashing and laughing.  I thought those sounds, of an undisciplined mother allowing her kids to jump on their beds (when they had beds–which in our case, wasn’t always….they have had footons, or at times when necessary–a sleeping bag on the floor) would end after a certain age.  Like, maybe five?

These are not usual sounds for kids between ages 17 and 22!

I enter with my new hair.  The room grows quiet.  The wigs are hideous. I don’t look anything like the beautiful women in the catalog.  One makes me look like Mo of the Three Stooges.  The other like a full grown sheep dog is sitting on my head.  Drooling hair all over my face.

These go back in the box.  But, not until after Trevor and Michael can try them on.

I am back to hats.

Until today.  I have to go to the store and I pick up the mail on my out.  I don’t open it until in the parking lot at Costco.  New wigs are in.  These are much better.  My size.

I put one of the wigs on, tear off the tags and march in flashing my member card and a big smile to the doorman.  A member card that was also a donation from two girls who work the membership desk.  The day we walked in to sign up and find that it was more to join than we had.  One of them chased me down the parking lot, yelling for us to stop.  I thought maybe they were accusing me of stealing.  But, instead, she asked us to come back in.  Two of the workers wanted to purchase the membership for us.

My newly bald head must have been peeking out from under my scarf.  Or I just looked so obviously newly diagnosed.  They donated.  I cried through the entire process.

I still cry every time I pass them at the desk.  I guess that’s where the term, she ‘wigs out’ every time she sees us, must come from?

I flash my member card proudly and with gratitude.  Today, I am just one of the crowd.

As usual, I wander longer than I planned to and find myself checking out an hour later. There are two girls at check out.  They whisper to each other and then, see that I see them whispering.  The obvious ‘you’re-talking-about-me’ whispers.

The whisperer quickly points beyond me, fanning a quick lie, “Oh, isn’t her purse so cute? That lady over there?”

The other girl and I both look.  I crane my neck to see the lady at the cash register behind me.  She is in her eighties.  And so is her purse.

I touch my wig.

In the car, I take a look in the rear view mirror.  This is becoming a habit. Go to a store, feel awkward about something and check it out in the car mirror.  This time, I see what they were whispering about.

My wig had fallen forward onto my head.  I couldn’t feel this.  The back of it flipping up and exposing my bald head, the front is pulled down across my forehead and crooked. This is the sort of thing that would make Michelley and Cassie laugh.  Which, in turn, would set me off to laughing uncontrollably.  But, since they are not with me, I am not laughing.

I am sorry, Mr. Ensign.  My eighth grade science teacher.  I am so sorry that we tried to make a game all year of knocking your crooked and obvious toupee off of your head with paper airplanes when you were grading papers and ignoring us.

I really am sorry.

I can’t put the wigs back into the mailing package fast enough.  They will be returned tomorrow.  This is not me.

I meet Cassie for some wedding dress shopping.  She likes tiaras.

We decide that maybe this is more me!

Other donations start coming in to help us.  My gym kids are sending cards, hand-made cards, grocery and gas gift cards, care packages.  I am missing them so much.  It is worse that I didn’t know I wouldn’t be with them anymore.  I said goodbye as usual on a Friday after practice not knowing that THAT would be my “goodbye-I-won’t-ever-coach-you-again-goodbye”.

The slippers from my silly, fun-loving and delightful gymnast, Natalie!
The pink ankle bracelet made by Jessica B….her and Jordan each have one too. We plan to keep them on until I get an All Clear Report!

A box of hats! All hand-made, beautifully wrapped with hand-written motivational quote cards, by beautiful hearts–Jessica B. with Jordan’s help!

I can’t work.  Not allowed to work.  State disability is nice, but it’s a little less than the allowance my parents gave me as a ten year old.  (exaggeration: I think I earned $2.00 a week back then, and state disability is certainly more than this, by a few dollars).  And, this will end one month before social security disability will start.

I don’t know what we would do without this help from friends, families and even strangers.  Without my dear Jessy Bell.

Jessy set up a fundraiser for me.  This just blows me away.  I have never had anything like this and it is both humbling and difficult.  I never ask for help.  I’d rather do something myself than to burden someone else.  Yet, I know that we can’t do this, this moving on, without help.

It is coming, but not for a while.  We will have to wait.  Meanwhile, I learn how to suck it up and sit in the food stamps lines.  And, today, I get another package delivered to my door.

A pink autographed T-Shirt.  A pink rose.  And, a few other pink trinkets.  I am confused.  I don’t recognize a single name on this shirt.  The package is from a Rhode Island fire department.  The “Pink Heals” Chapter.  I think, maybe they heard how I studied photography so much that I felt like I had become obese on the amount I took in and was now stuck in my recliner needing a fire department to pull me free?

I am confused.  I show Cassie.  She recognizes each and every name on this shirt.

Cassie had traveled around the country casting for Biggest Loser.  Making stops for the show at many different fire houses.  And, Cassie being Cassie, I am sure she made a few people laugh along the way.

It’s good to have firemen friends, in case you ever need help getting out of your recliner.

I think they liked Cassie.

Cause, I got this T-Shirt!!!