Tuesday, February 24, 2009

Cash...Check...or Charge...

Cost of 1 visit with the oncologist: $463
Cost of 1 Oncotype test: $3820
Cost of 1 round of Chemo: $4500
Cost of 1 Neulasta shot: $7600
Cost of 1 lumpectomy surgery: $19000

Cost of seeing my twins smiling faces when they run in the door after a day at Ecole: priceless

* I don't know how people without health insurance in this country manage their care - it is criminal. The bills are exorbitant. We are lucky enough, despite being self-employed, to have good health care, with reasonable co-pays. We pay out the a** for it and the bills still rack up. We open them, read them and file them and wait for the phone calls to begin. If anyone out there still thinks that our health care system isn't broken, then they are sorely mistaken.

**Mom goes in for her surgery tomorrow. Her breast cancer is clinically Stage 1 at this point. She'll have a lumpectomy to remove the tumor, a sentinel node biopsy and a balloon inserted to prepare for a mammosite insertion. This little device will then able the radiation oncologists to pinpoint the area of her breast to be radiated. (I unfortunately, was not a candidate for this device and will undergo 6 weeks of radiation.) She will have have 5 days/2x day of radiation next week and then her treatment will be finished. She'll have been diagnosed, operated on, and gone through treatment within a total of 3 weeks. For that I am grateful as I don't know if she could withstand the 6 months that I am going through. Good luck, Mom!

Thursday, February 19, 2009

The plot thickens...or I had a Hungarian grandmother...

We called her Nudgemama and she was my Mother's mother. She died when I was 10 or 12and she was close to 90. Her name was Julia and she was a milliner in Debrecen, Hungary before she came to America in the late 1800's to become the bride of a Hungarian widower. She got pregnant 14 times, gave birth 11 times, and had 9 children who lived. My mother, who is now 85, was the youngest. She never learned English and always lived in Carteret, NJ. As a child, I remember going to see her with my Mom...at that point she lived on the second floor of a row house. It was quite dark; she was very old, had a long grey braid down past her knees, she wore heavy black shoes and had lace doilies on her furniture. My uncle Joe, who smoked and drank, lived in the front room. Nudgemama only spoke Hungarian and she could only converse with my Mom or Uncle Joe. The only words we knew how to say to her were "Koszonom, Nudgemama"...thank you, Grandmother. She would serve us 7-Up at her round wooden table or Jello when she had some. Have you ever seen Jim Jarmusch's film "Stranger Than Paradise"? The Hungarian Aunt Lotte always reminded me of Nudgemama.

When Nudgemama died, my Mom always said it was from old age and other ailments. That's why it was shocking to learn the other day at my Mom's oncology appt, that supposedly she had died of breast cancer. For our entire lives, no one has known this. I have 2 sisters and my younger sis has 3 girls. This could be a lineage of breast cancer. As my Mom revealed this important detail of family history to her new oncologist, my Dad and I stared back in disbelief. He had never heard of it either. Apparently in Nudgemama's dying months, as old and feeble as she was, she never let anyone near her and never saw any doctors. When my Mother finally saw her body, her breast was apparently "eaten away by cancer." Thanks Mom, for the breaking news. My sisters and I have been filling out our medical histories for years checking "No" under breast cancer in the family. Oh la la...

So now, I am being tested for the BRACA gene. It is a specific genetic mutation that indicates a tendency towards an inherited breast cancer in the female lineage of the family. It sharply raises the percentage of recurrence and also tends to point towards ovarian cancer as well. Great. Now I have a grandmother who died of breast cancer, a mother who has breast cancer and then there's me. The chances are slight that I carry this gene...but I am the fulcrum. If I test positive, then my sisters need to be tested. If my younger sis tests positive, then her daughters will need to be tested when they turn 18. All signs point to negative for me...my cancer being an anomaly and the cancer of my Mom and Nudgemama being a result of old age. I find out in 2-3 weeks. Just another piece of shit to heap on the pile...

P.S. Chemo #3 went off without a hitch on Tuesday and now I am just very, very tired so far...I have an Echo tomorrow to make sure that my heart is working:) and then we see my superstar surgeon, Dr Smith, for my Mom's appt.

Monday, February 16, 2009

And who is the President?...

It really is the age of the one-liners with these twin toddlers but it's also the Age of Independence. It started with "No" and then on to "I don't want to" and now Creed says "I can't". And so when Creed decides to be contrary, I launch into what I call the 'Obama Game'.
It goes something like this:
-Me: Creed, please take off your shoes when you're on the bed.
-Creed: No, I can't.
-Me: Creed, who is our President?
-Creed: (enthusiastically) Obama!
-Me: And what does Obama say?
-Creed: Yes, we can!
-Me: Okay then, yes, you CAN...now, take off your shoes!

On a related note, have any of you other toddler parents recognized the relationship between the "Bob, the Builder"'s (in French, we call him "Le Bricoleur") motto and that of Obama's?
"Can we build it? Yes, we can!"
A coincidence?
I think not.

P.S. Round #3 of A/C chemo tomorrow. I am dreading the after effects...fingers crossed.

Thursday, February 12, 2009


My mom is 85. She is feisty, ornery, opinionated and smart but getting older by the minute. AND NOW SHE HAS BREAST CANCER!!!! WTF!!!

She had a biopsy on Monday and as she called for 3 days, yes, 3 days, for the results, she got the run-around from her boob (no pun intended!) of an internist. Today he told her, "Mrs C., I don't have the results in front of me but I can "verbally" tell you that they found cancer cells in your breast biopsy." Apparently he told her it's the "most common type". Huh?

I am:
-pissed off
-anxious to be focusing on someone's illness rather than my own...

Tomorrow, I'm accompanying her to an oncologist that the "boob" recommended...then, we're going to see the rock star, Dr H.
This is not my idea of a mother-daughter bonding experience...

Tuesday, February 10, 2009

A coma & Coca Cola...

So, I had this idea. Yesterday was oh so, miserable. The night before was spent in relentless nausea and sleeplessness. I ate saltines, I ate pretzels, I took the extra anti-puke pills. I couldn't read, watch TV, or look at a computer. I can't even look at ginger ale any more. I awoke and had a half hour of relief and when Aunt Claudia aka Aunt "Kia" arrived to pick up the kids, I ran to the bathroom and spent the rest of the day in bed. So, why can't they just put chemo patients into a coma? You arrange your life for the next 4 months: childcare, meal delivery, house cleaning, business decisions, even a video tape of conversation...and then you just check out. Every 2 weeks, they can inject you with the toxic drugs and then there's no nausea! no fuzzy brain! just sleep! It seems like a good idea to me...then they wake you up and you can go through radiation. What do you think?

As for the Coca Cola: I had a craving. The dry mouth is constant and last evening, I wanted a good old-fashioned fountain coke. Aunts Shakti & Claudia took the twins for a walk down the street and came back with a tall cup of sweet, carbonated goodness. Aunt "Kia", being the wellness healer that she is, was concerned about the caffeine. My response was, "I already don't sleep on the steroids so WTF?" I probably sipped on a third of the Classic Coke and you know what? I slept, no nausea, and I awoke at 6h30am to my toddlers ready to start the day. And now of course, I need a nap.

Recent one-liners from the twins:
-Zelda (out of the blue the other day): "Mommy, I want to go to France!"
-Creed (upon going into the crowded workshop of a friend): "My daddy likes junk, too."

Saturday, February 7, 2009

Playlist...department store mannequin...

So, la petite Z has a play list. She can name Sting, Beck, Spoon & Alejandro Escovedo on KGSR in 3 notes or less. We're going to make a lot of money off this kid if "Name that Tune" still exists when she's older. She can distinguish between The Police and new Sting. She's picky about her 60's R & B, 70's disco and dance hits of the 80's. We bought her one of the no-tech reverb microphones that she'll sing into like an echo chamber...these are her favorite feel good tunes of the moment:

- I Got You (I Feel Good): James Brown
- Message in a Bottle: The Police
- You got yr. cherry bomb: Spoon
- Don't You Want Me: Human League
- Sister Lost Soul: Alejandro Escovedo
- Le Freak: Chic

As for me, the velcro stubble is shedding. After the haircut of last Friday, my five o'clock shadow was starting to reappear and I was getting pissed. It's itchy, it's sticky and it hurts on my pillow. Funny thing, the other night, I got up to pee, half-asleep and as I got back into bed, I instinctively went for my long hair at the nape of my neck to brush it up onto the pillow.
I was just in the shower at noon and felt the water streaming down my lonely skull. And when I emerged, I looked at myself naked in the mirror - like a department store mannequin. Long neck, skinny shoulders, small breasts & waist and bald. Spray me in white plaster and set me in a vitrine.

Thursday, February 5, 2009

2 notes...

Note No. 1:

On Wednesdays at Ecole, an art teacher comes in to do paintings with the kids. Creed brought home a Winslow Homer rendition. In the meantime, Zelda worked with her pre-Braille teacher and this came home in her lunchbox. I'm verklempt!

Note No. 2:
From my dear, funny & erudite friend, Laurent, in Paris (with an attempt at a fuzzy brain translation de ma part):

"En gros il y a trois résultats esthétiques possibles au crâne rasé chez la femme:
(Overall, there are 3 aesthetic outcomes possible for the woman with a shaved head):

-La version Britney Spears, genre j'aurai pas dû laisser mon p'tit frère jouer au coiffeur avec moi, pour rattraper le coup j'ai pas pu faire autrement que de tout raser et je ressemble à une poupée pas finie.
(The version Britney Speers, the type that I shouldn't have let my little brother play hairdresser and now to 're-coupe' I could only shave it all off and look like an unfinished doll.)

-La version Sinead O'Connor, style nonne bouddhiste, oui je sais j'ai l'air très ennuyeuse et ascétique, et c'est peut-être pas tout à fait faux.
(The version Sinead O'Connor, style buddhist nun, yes, I know I seem bored and severe, and perhaps it's not entirely untrue.)

-Enfin la version Grace Jones (ou Gail Chovan), c'est-à-dire j'ai une "gueule" et quand on me regarde on a l'impression que j'ai une nouvelle coupe et pas que je n'ai plus de cheveux."
(And finally the version Grace Jone - or Gail Chovan - that's to say, I have a "look" and when one sees me, they'll have the impression that I have a new "doo" and not necessarily that I no longer have any hair.)

Keep 'em coming...

P.S. Today I'm dealing with pukiness, insomnia (up night from 1am-4h30am), headache, losing taste buds, an acute sense of smell and intense dry mouth, dry eyes and dry skin...trying to get some sleep. I know that it all could be a lot worse, but this sucks...

Wednesday, February 4, 2009

Hair kids...Chemo #2...

So, after the emotional haircut afternoon, I wrapped my head in a scarf and Evan went to pick up the twins. I had been telling them of the haircut for days before in order to prepare them. Creed walked in, looked at the scarf and said "What's this?" AS I unwrapped my head, I said "This is Mommy's new haircut." He looked for a moment, grinned and said "I (y)ike it!" Then he kissed me on the head. I took Zelda's hand and placed it on my stubble - she said "Mommy, haircut!" and laughed. The next morning, Creed woke up and crawled into bed with us. He took one look at my newly shaved skull and said "No more haircut Mommy!" Sorry Creed, I can't go back...at least, not for a while.

Chemo #2 was yesterday. Again, it went off without a hitch. Accompanied by Evan and our friend, Joaquin, a filmmaker, we met with Dr H. I always feel good about our meetings because she tells me how great I'm doing and how young I am! Her latest comment was "You have great marrow!" I'm so pleased with that one...as my blood counts remain strong and that means I can continue the chemo on the every 2 week schedule and be done in 6 more rounds. I am beginning to know the nurses and always ask lots of questions. We tweaked my meds so I haven't had the lingering, bothersome headache although the nausea persists. Crackers and ginger ale have been doing the trick. I eat well and have started taking pro-biotics. I even worked yesterday. Right now, besides the nausea and fatigue, the most troublesome SE (that's 'side effect' in chemo lingo) is the insomnia. The steroids wake me up and I am soooo restless. It's difficult to read because my eyes are dry, blurry and unable to focus. My mouth is so parched, I constantly sip on a bottle of water. I got up to make jewelry but was too tired and cold. I was awake for hours.

Today - 24 hours after chemo - I return to the lab for my shot of Neulasta. It is a drug that boosts the white blood cell production in preparation for the day 7-10 typical plummet. I had little trouble with my first shot but they say common SE's are intense bone pain and flu like symptoms which can occur within 24-48 hrs of the injection. I'm hoping to keep smoothly sailing through...

P.S. My new profile photo is from Saturday night - a black tie affair at the Blanton Museum. It was my first attempt at an 'Aretha-like' turban in .89/yd black fusible interfacing. I wore a leather ball gown that I had designed several years back. The event was very 'old' and very 'monied'. 70-year old women in ballgowns from the 1960's would come up behind me and say "Honey, I like your hat!". If only they knew...

Sunday, February 1, 2009


photo by Todd V. Wolfson, haircut by Deborah Carter of PINK Salon