It really was all about the HAIR

 Being Me . . . moving forward

It is really amazing to me how much of the cancer experience has been about my hair.  But, it really was.  11 out of my 41 CaringBridge entries were either all about hair or had a significant hair mention.  

More amazing to me, is how much "the hair" still seems to play a role in my life.  It takes some serious hair products to tame this hair as it is growing out.   And, even with all of the products and care, some mornings I wake up and feel like I'm looking less like Annie Lennox (I wish) and so much more like Jay Leno, maybe Lyle Lovett, maybe Don King.  Sigh.  

Ah, the hair . . . may she grow back quickly and slightly, just ever so slightly less gray.  

From the pages of the CaringBridge archives:

Wednesday, August 25, 2010

Good hair day, bad hair day, no hair day, good wig day . . . It’s always about the hair. 

Surgery, chemotherapy, nausea, brain fog, radiation set up, tattoos, radiation (two sessions down, 26 to go) are all nothing compared to the “hair.”  Especially when you have cancer and a ten-year-old daughter, or you are a ten-year-old girl who has a mother who has cancer.  It really is all about the hair.

My hair is slowly starting to grow back in, and if I didn’t have a ten year old with long, beautiful brown hair, I would very soon be whipping this wig off as quickly as Julie Andrews did in Victor/Victoria (1982) when she played a woman playing a man playing a woman. 

The reality is that my hair is not entirely ready for the big public reveal.  It still looks a little Schindler’s List (1993).  E is horrified that I’m even considering going out of the house without one of the wigs.  I explain that it’s almost time for me to lose the wig.  It feels silly to put on a long, straight hair wig when I have an early stage pixie cut like Mia Farrow in Rosemary’s Baby (1968) growing in.  I explain that going wigless makes me a little (a lot) nervous too.  I explain that I’m not totally comfortable with the new hair look yet.  But, I explain that I’m more uncomfortable with the wig on.  The wig is beginning to feel a little bit like a disguise at this point.  It really feels like the right thing to do--soon.  So far, E’s not buying it.  She gets very quiet and a bit weepy whenever I bring up the “no wig” talk. 

School starts in our town on September 8th.  I’d love for my whole family to be comfortable with my new hair by then.  New beginnings . . . and all that. 

If not then, I finish radiation (and all cancer treatment) on October 1st (10-01-10).  I love that number, by the way.  So many ones balanced and standing alone, but with others.  There’s something very powerful in those collective ones--the sum of the whole being greater than its parts.  It seems so strong and symbolic of a year that I have experienced on my own but shared with so many.  So that might be a good day too.

For now, I’m not entirely sure when I’ll stop wearing the wig—or rather when I’ll start wearing my new hair.  But, I know that it will be a big day for E and for me.  I know that she’ll be nervous, and I’m sure that she’ll be a little angry.  But, I hope that she’ll also (someday) be a little proud.

moving forward,

with love and gratitude (and movie references),

Barbara

Thursday, August 26, 2010 9:52 PM, EDT 

thirtysomething 

This entry has little to do with my cancer or my cancer treatment (although, for the record, three radiation treatments down, 25 to go).  It’s actually a bit self-indulgent.  If you watched thirtysomething (1987-1991, Tuesday nights on ABC), you might appreciate it.  If not, you might want to pass.  Sorry.

I loved thirtysomething.  It ran the four years I was in college, and I loved it.   I loved watching the lives of Hope, Michael, Elliot, Nancy, Gary, Ellyn and Melissa every Tuesday.  I loved that they were ten years older than I was.  I loved that they over examined the minutiae of their lives.  I couldn’t wait to be thirty.  Marrying, working, not working, mothering, being friends, repairing friendships.  I loved the relationships—marriages, friendships, and the group dynamics. 

I (over) related to Hope, the non Jew, married to the dark haired, handsome, Jewish, Penn grad, Michael. 

I especially loved the episode when Hope and Michael work out their interfaith Christmas/Hanukkah dilemma.  They argue and disagree the whole episode.  But, in the end Hope lights a menorah with Janie, their daughter, as Michael watches through their front window as he holds a Christmas tree he just carried home in the snow.  I loved that interfaith couple and their daughter.  Art imitating life imitating art?

I loved how Hope’s struggle between working and staying home with their daughter played out.  I loved their leaky roof and all of their "real life" issues.  I loved watching Hope and Michael and their friends together—the community of friends who were their family. I loved the show so much that I bought the soundtrack CD--twice (just in case one broke). 

By now you know that music is always playing in my head, playing so loudly that it sometimes overflows to humming.  I used to hum songs from the soundtrack all of the time.  On happy days, the show's opening instrumental that ends with “and dance by the light of the moon” or Ellyn’s wedding song, Ray Charles’ “Come Rain or Come Shine.”  Or, on sad, rainy days, the music from Nancy’s cancer episodes.  I’m not kidding.  Cancer soundtracks in my head and humming on my lips.

Plot /life twist—I was supposed to be Hope—not Nancy.

Nancy was diagnosed with ovarian cancer in season three.

I remember an episode after Nancy was diagnosed, and she and Hope went  to an airport parking lot, and they laid on the hood of one of their cars.  Nancy and Hope yelled and cried and screamed together about how angry and sad and scared they were, and no one hears their screams.  The airplane engines drowned them out.  I don’t remember how Nancy talked to her children about her cancer, and I don’t remember a lot about her treatment.  I remember the screaming; I remember the fear; I remember her headscarves (it really is all about the hair); and I remember Nancy's cancer went into remission in season four.

Like Hope, I married a dark haired, handsome, Jewish, Penn grad.  We had a daughter.  Like Hope, I became a stay at home mom.  And then a few seasons /years later, we had a son.  Like Hope, I over examine the minutiae of my life.  Like Hope, I have great friends and friendships.  Plot/life twist—I got the cancer.  Stranger plot/life twist, the sad music that played during Nancy’s big character arc (and used to play in my head on sad days) didn’t play in my head this year.  Not even once.  

Funny how that happened. 

Looking forward (to my season four, I mean to fall),

With love and gratitude,

Barbara

Saturday, September 4, 2010 9:45 AM, EDT

Today is a big day for our family.  Actually, a big day for E and me.  Today I am wearing my own hair for the first time in a very long time.

I had a deal with E that I would wait until after Rosh Hoshanah to lose the wig.  But, I can't wait.  I'm done.  Today is the day.  And, E is angry.

I asked her what makes her so upset.  She told me that she is worried that her friends will say that my hair looks weird.  While I'm sure that this is part of what she's worried about,  I  also know that this hair thing is is related to many of her fears and anxieties about me and my cancer.  I don't think she thinks I look unhealthy, but I do look different.  And, when you're 10 (or 41) hair is a big deal.

You have all been so kind and supportive throughout this whole year--and so have your children.  I have an additional request.  If you think it is appropriate to discuss with you children, please mention to them that my hair is going to look different for a while.  And, E is very sensitive about the new look.  Maybe you can encourage them to be thoughtful about what they say or don't say to her.  Maybe nothing at all would be best.  I'm not sure.

Wow.  As I'm rereading this entry, it sounds super controlling.  In a year that I haven't had a lot control, I really am trying to control this.  I'm trying to protect Elizabeth.  My girl, my girl with the long brown hair. 

It really is all about the hair--for now. 

Wish me luck.

moving forward,
with love and gratitude,
Barbara

For the record,  J and A think my hair looks great.

And, if you're keeping track, nine radiation treatments down, 19 to go. . .

soon after the cranial reveal

Saturday, September 18, 2010 3:39 PM, EDT

Membership has its Privileges

Radiate.  Radiation.  Radiant. 

Radiation is the last third of my cancer treatment triathlon.  I chose to have my radiation treatment at the Memorial Sloan Kettering Cancer Center satellite at Phelps Memorial Hospital in Sleepy Hollow. The treatments are everyday, Monday through Friday (not including Labor Day).  As much as I love the Sloan Spa, the trip in to the city everyday for 28 days would have been more exhausting than the actual treatments.  The treatments are quick. I'm in and out in 30 minutes on most days.  And, it turns out, the Sloan satellite is a pretty great place.  It's no Sloan Spa, but I really like my oncology radiologist, Dr. Borys Mychalchak, and his nurse, Debbie ( she happens to be a knitter). And, I've grown to like the receptionists too. 

There are parking spots reserved for the Sloan Kettering patients—see new photos. 

Membership (even in this club) has its privileges.  

Phelps is on the Hudson River.  The view is amazing.  Everyday as I drive up to the hospital, I am in awe of the beauty of that river.  A “Sloan with a View.”  

I remember the first time Jay and I went to the Sloan Kettering Breast Center in January to meet my breast surgeon.  I knew that I had cancer.  I knew it had spread to my lymph node. I knew that I would have surgery and chemotherapy.  

We got out of the cab, and I saw the building with the words--Memorial Sloan Kettering Cancer Breast Center. I was a person with cancer, and I was going to be a patient at Memorial Sloan Kettering.  It still takes me back. Cancer, really?  Sloan Kettering--that's where sick people go, that's where people with cancer go.  Cancer. I was a person with cancer getting out of a cab, walking into the Memorial Sloan Kettering Breast Center, meeting a breast surgeon. Like many of the milestones of this process, my memory of that day is super clear.  The building, the doorman, the elevator ride, the waiting room, my breast surgeon.  It was eight months ago, and it feels like yesterday. A lot of things in this whole journey have become “normal.”  The calendar full of appointments, the doctors, the nurses, the side effects.  But, every time I see the words Memorial Sloan Kettering, I'm taken back a little.

I am (still) a patient at MSKCC. And will be for a long time.

I have 10 radiation treatments to go. Then I will continue to have follow up appointments--every six months with my surgeon and my oncologist.  After a few years I graduate to the survivorship program. 

Survivorship.  

I am soon to begin my transition from patient to survivor.  

And, I’m ready. Very ready.

Moving forward,

with gratitude and love,

Barbara

Somewhere in the middle of all of the radiating and school starting, A had a birthday.  My boy who still kisses my head goodnight turned seven.  Happy birthday, baby.

Cheeseburger (cake) in Paradise

Saturday, September 18, 2010 3:51 PM, EDT

Ding Dong!  The Wig is Dead

 I stopped wearing my wigs two weeks ago.*  They still sit exactly where they were when I wasn’t wearing them.  One sits on a wig stand on my dresser.  The other two both hang on a short coat rack in my bedroom.  This week I realized I could put them away. 

 

It made perfect sense; they’ve done their jobs.  It’s time to put them away.  I picked up “Twiggy”—the wavy, more ceremonial wig from her stand, and I began to cry, really cry.  Crying in that completely flooded and overwhelmed way.  Overwhelmed by how much energy went into choosing that wig—finding the right wig place (should we go to Borough Park—the self proclaimed “wig capital of the world” or the wig place on the upper west side “where all the girls go?”).  Flooded by the anxiety of preparing my children (and me) for the wig and the nervousness of wearing the wig in public for the first time.  (Is it on straight?  Does it look “wiggy?"  How’s my hairline?).  Wig talk.  

Back in December, I had no idea what this journey would be like.  I had all the facts.  I knew I had cancer.  I would have surgery.  I would have chemotherapy.  And, I would lose my hair.  Looking at and holding the wigs made me so incredibly sad for the woman I was nine months ago who was so innocent, unknowing and afraid of what was ahead of me.  The big cancer treatment abyss.  I tried to take one day at a time.  But, I knew there would be so many days.  

I had the surgeries.  The chemotherapy is over.  The radiation is soon to be over, and I have hair my own hair.  I don’t need to wear the wigs.  I still think “Cancer, really?”**

It has been a long year.  And, I am tired.  I am.  I just am.  I am tired of cancer and cancer treatments.  And, I am tired of the treatments that have made me so tired.  I am ready to not be tired.  So very ready.  A friend and breast cancer survivor recently told me that I probably don’t even realize how tired I am.   A month from now when this is all over, she said, I’ll look back at September and think, “wow, I was really tired then.”  Guess what?  I am tired, and I really know it.  I am ready not to be tired.  

* Much to E’s credit, she quickly got over the big cranial reveal.  She has since been embarrassed and angry about other things that I have or haven’t done.  Ah, the mother and ten year old daughter dynamic.  How lucky I am that we made it through this year and that she will have many years to be embarrassed and angry about things I say or do or things I don’t say or do. 

I am looking forward to every minute of it.

** I still haven’t put the wigs away.

For those keeping track of Project Radiation, I have completed 18 treatments.  Ten to go.  And, by October 1st, I will be positively radiant. 

Moving forward,

With love and gratitude,

Barbara

Monday, September 27, 2010 9:07 PM, EDT

Family

I have a cousin who is generous and also a computer genius.  A great combination if you happen to be his cousin and are lacking in computer skills.  I am both.
We haven't seen each other in a long time.  Last time we were together, I was just getting used to wearing my wavy, more formal wig.  I was feeling uncomfortable and very self-conscious, and he managed to take a candid picture of me.  It turns out, one of the best pictures I have of me in the wig.  And, he emailed it to me.  I don't have many pictures of me in any of the wigs.  It was so interesting to see myself as others (or at least his camera lens) saw me.  And, it was good to see that the wig was on straight and that it didn't look "wiggy."
Anyway, my cousin came to our house yesterday to install a new computer for us.  Good bye PC; hello Mac.  Soon after he walked in, we were chatting, and I held up a picture of Annie Lennox (I have pictures of short haired celebrity women all over the house--Annie Lennox, Gennifer Goodwin, Maura Tierney*) and asked "what do you think about my new hair?  Very Annie Lennox, huh?"  And, he said without missing a beat "you know, I was going to say that, but I was thinking more Annie Lennox, The Bare Album."
My cousin, the photographer, the computer genius, made my week.  (And, for those of you keeping track, this is a big week.  T minus four days until the end of my radiation treatment).   
He made my week, not because I long to look like Annie Lennox--although I am a fan--and so is he.  He made my week, because I am really missing my old hair.  I'm doing my best to work with what I've got.  Don't get me wrong, I'm grateful that it grew back so quickly.  And, I'm thankful that my friends have been so kind and tell me often how great the super short, gray, straight hair looks.  One friend even went so far as to buy me new earrings to celebrate the new "do."  (Note to self, earrings are a great gift idea for anyone in my situation).  But, really, I miss my old hair. 
So yesterday, my cousin really made my night (and my week) by telling me that I looked like Annie Lennox (The Bare Album).
And, he also did me the most amazing favor of setting up our new computer with ease.  I'm telling you, he's a genius.

moving forward,
with much love and gratitude,
Barbara

*Maura Tierney, recently treated for breast cancer, is now starring in "The Whole Truth" on Wednesdays--ABC at 10 pm.

Sunday, October 3, 2010 11:18 PM, EDT

10-01-10
I finished my 28th radiation treatment on Friday. 
The marathon of cancer treatments is over!
Let the "well" visits begin.

moving on,
with love and gratitude,
Barbara

October is Breast Cancer Awareness Month--make your appointments and get your mammograms (and sonograms) ladies. 

Reconstruct and Restore

Being Me . . . moving forward

(Still CaringBridge entries--bear with me)

Visiting Day

Sunday, July 26, 2010

No references to celebrities (with or without breast cancer) or to the song that is currently playing in my head today--just a general update.

We just got back from visiting weekend with E. in Maine. She looks great (so tall), has a nice group of girls in her bunk, and seems to be having a great time--lots of girls laughing and singing at camp.  But, saying goodbye after a one day visit is really so hard.  Hardest on A.--he's always the first to cry, and then like M. family dominoes, we all start to cry.  Then E. (hopefully) goes off to fun evening activities, and I worry about how she is the rest of the night.

I strategically planned to have my reconstructive surgery after visiting day.  So tomorrow is the big day.  It's an outpatient procedure--so as soon as I'm feeling well enough to walk from the post-op bed to the recovery chair, they'll feed me a few graham crackers, offer me a cup of coffee, and they'll send me home.

While I'm not looking forward to the surgery, I'm not as nervous as I have been before all of the other surgeries--how's that for desensitization?  The woman who still passes out at the sight of blood (or the thought of the sight of blood) is not nervous about surgery-- curious.

And, honestly, reconstructive surgery sounds so much better than mastectomy.  Reconstructive sounds like when I'm done there will be a better, stronger, healthier me.  Reconstructive almost sounds restorative.  I will be restored.

It also sounds like the beginning of the end of this wild ride of 2010. 

(And, for the record, the song playing in my head is The Beatles, "Here Comes the Sun."  Andrew watched "The Bee Movie" on the way home from Maine.  And, somehow it fits).

Moving forward,
With love and gratitude,
Barbara

Monday, July 26, 2010

I'm home.
I'm tired.
I'm medicated ("I Wanna Be Sedated"--The Ramones).
And, I'm DONE!
(with surgery). 

The next phase is radiation--starting the end of August.

Thank you so much for all of your emails, snail mail and phone messages.  I am truly getting through "Cancer 2010" with the support and love of family and friends.  [And a whole lot of knitting (a great new project with my favorite yarn), lots of TV (hello again and again, Weeds DVD's; welcome back, Mad Men;  and my new favorite, Bethenny Getting Married?) and late night reading (currently, Cutting for Stone--next in queue, The Thousand Autumns of Jacob de Zoet )]. 

moving forward,
with love and much gratitude,
Barbara

  

July 2010

In an earlier post I may have mentioned that reconstructive surgery sounded restorative to me.  I'll admit that was a great attitude to have the night before surgery.  But, the reality of my reconstructive surgery is that it was more construction than restoring.  More cutting and suturing; less namaste and savasana.  I had this image of coming out of surgery and feeling mentally and physically restored (and somehow restorative yoga factored into my image). 

I also had myself convinced that this surgery was simply a "swap."  Swap out the tissue expander (that's been in place since my mastectomy), and swap in the permanent implant.  I kept telling a friend "this procedure is not a big deal, just a swap, one foreign object out, one foreign object in." 

Good attitude.  Nice try. 

The exchange procedure (as it is called in the cancer business) is "simply a swap," a routine procedure for my surgeon.  And, I will ultimately feel and look restored.  But, the reality is that surgery is surgery.  And, recovering from a routine surgery is uncomfortable and exhausting.  And, I was uncomfortable and exhausted all last week.  Not even close to feeling restored.  And, since E. is away at camp, and A. is at day camp all day, I took full advantage of resting and sleeping and healing all week.  It's hard to know if I was as uncomfortable and exhausted following each of my other previous procedures.  I didn't have time for that much sleeping and resting with the others.  So last week was uncomfortable.  But, it was also a luxury to be able to rest and heal--and truly start to restore. 

I have my post-op visit with my surgeon tomorrow--and once my surgical drain is removed (sorry for the graphic detail, but drains are a big part of this whole process--so much so that I could (and still might) write an entire journal entry on the drains), I will really be up and about again.  Back to yoga and exercise (research indicates that 30 minutes of cardio a day is a key factor in the prevention of a breast cancer recurrence) and errands and packing for our family vacation.  E. comes home from Camp Walden on the 13th.  And, on the 14th we are driving to Quisisana, a family resort in Maine (30 minutes from Camp Walden), to spend a week together as a foursome. 

And, that, I know, will be restorative. 

Moving forward,
With love and gratitude,
Barbara

Quisisana (Italian)--"a place where one heals oneself"

Tuesday, August 10, 2010 6:41 PM, EDT

If I were writing a screenplay for a dark comedy about life with cancer--oh, what's that?  Showtime is already producing a dark comedy series on "The Big C" starring Laura Linney (premiering Monday night, following Weeds)?  Damn.  They must have a few writers who were "lucky" enough to have had the cancer experience years ahead of me.  Okay, so I'm a little late to the game.  But, really, it's genius.  Life with "The Big C" is often a dark comedy.

Anyway, if I were writing a screenplay based on life with cancer, I would include the hair loss, the wig(s), the doctors, chemo, surgery, drains and all of the usual cancer details and anecdotes.  But, I would also include eyebrow and eyelash loss.  Hair loss is easy to disguise--somewhat traumatic in the actual losing of the hair, but very easy in the disguising.  I get compliments on my straight wig everywhere I go.  I've even started telling people that it's a wig instead of just saying thank you.  I can't take credit for the seemingly keratin-treated straight hair anymore--it seems dishonest.

And, as it turns out, hair loss is even relatively easy to adapt to.  I've never covered my head when I'm home with my family.  In the beginning, E. needed me to "cover up"  with a hat if we were in the same room.  But, a few weeks in, even she got used to the "at home" look.  Right from the start, A. told me that he knew that E. didn't like seeing my bald head--but, he was "okay with it."  With him, he said, I could have a bald head "like when E. goes to art class."  In fact, in this wild year of cancer, my six year old boy with the big blue eyes has created a new bedtime routine.  Every night he kisses me good night--and then he insists on kissing my bald head.  My boy--I often wonder how much of this his six year old brain is taking in and how much he'll remember.

But, enough about the hair, the lack of hair and the hair substitutes.  The eyebrows and eyelashes--they are another story.  Mine held on for a long time, but four weeks after my last chemo treatment they really started falling out.  Yes, there are eyebrow pencils and fillers and stencils, and there are eyeliners to give the illusion of eyelashes.  But, when there are only three, maybe five, eye brow lashes hanging on--I do not have the skill or the interest in building a better brow.  I don't have it in me.  I have a great eyebrow support team, my aunt (a bc survivor) gave me all of the best tools--eyebrow brush, eyebrow definer color (in "soft brown"), eyebrow stencils and articles on the best way to create and shape an eyebrow.  She taught me how to "make an eyebrow" long before it was necessary.  Still, I can't do it.  I look like a clown--or at best one of the actresses from the '20's who painted on dramatic, better brows. 

E's one reference to cancer on visiting day at her camp was "your eyes look freaky."  Damn the eyebrows!  Funny, though, I thought my eyebrows were looking pretty good that day.  I had been resisting the urge to cry--just to preserve the few remaining eyelashes and bits of eyebrow--just for E. 

So I mentioned my inability to build a better eyebrow to my friend (who just finished her cancer treatment), and she told me to try Laura Mercier's brow powder instead of the brow definer.  Who knew there were so many options? 

So, this is what I know.  I hate this cancer.  I can make the best of it, and I can often make light of it.  I can put a smile on my face and get through every day and every treatment since I was diagnosed in December.  I can even pretend that I'm writing a screenplay (that someone has apparently already written) about life with "The Big C" (premiering Monday on Showtime, following "Weeds").  And, sometimes, I can even find the humor in it.  But, really, I hate the cancer that used to live in my body.

But, what I love is the sisterhood of breast cancer.  I love the aunt and the friend who made sure I had all of the best eyebrow tools to help me look like the best me.  I love the friend of the friend who lent me the aforementioned straight hair wig.  I love the woman I met at the radiologist's office yesterday who wished me luck on my first appointment.  I love the survivors in my town who check in on me to see how I'm doing.  So for the record, the cancer truly sucks--BUT the sisterhood of women who have had or currently have cancer is amazing. 

I got the eyebrow powder last week, and my eyebrows have started to grow back in.  I must say these eyebrows are not looking that "freaky" anymore.  Just in time, E. comes home on Friday.

moving forward,
with gratitude and love (and "eyebrows"),
Barbara

Who is that woman with the light eyebrows and the Brett Michael's hair?

Quisisana (Italian)--a place where one heals oneself

Summer 2010--we all really needed a little healing, and Quisisana (Center Lovell, Maine) did not disappoint.  It was the greatest week.  We were together.  We had a beautiful cottage on the lake.  The entertainment, staff and food were amazing, as always.  We all got to do a little hiking, a little reading, the kids did a lot of swimming, and BOTH E. and A. learned how to water ski.  

For one whole week we were just a family on vacation.  No one knew our cancer story.  No doctors, no procedures, no treatments.  We had a vacation from our real life for just one week. 

Thank you, Jane.  See you next year!

Water skiing on Lake Kezar

 

The Chemo Chronicles

(still more of the CaringBridge posts--hang in there, I'm almost up to date)

Look at all that hair!  Photo by E--April 2010

With all of that hair it used to take me about 45 minutes to get ready in the morning.  Now it takes me fifteen minutes--from shower to out the door.  Hmmmm . . .

Thursday, March 25, 2010 8:18 PM, EDT

It's official--today I started the next phase of my cancer treatment! 

I started chemo today.   Woo hoo!!!!  I've said this to so many people in person, but you know that your world has been turned upside down, when you can't wait to start chemo.  Really--I couldn't wait.  I wanted it to start--today.  I needed it to start--today.  We are quite fond of the number 25, and I wanted my chemo treatments to be on Thursdays.  I  didn't want to lose my Thursday spot :)

So when my appointment went well with the reconstructive nurses this morning, they cleared me for chemo.  This afternoon I met with my oncologist and had my first of eight chemo treatments.  It all went well and super easy--just an hour today. I had super well trained and educated health professionals (and a lovely room with heated blankets--I love the heated blankets).  J was with me to help take in all of the information that they give with you before, during and after treatment. 

I feel great now.  And, although side effects vary, I should start to feel some form of some side effects tomorrow evening through Saturday/Sunday.  Ah, I love the certainty of the uncertainty of the side effects . . .

So as my good "friend" Fran Drescher might say--and maybe she has said--CHEMO SCHMEMO.  (I'm sure I'll be singing a different tune in a day or two) but for now--
CHEMO SCHMEMO!!!!!!!!!!!!!!

As always, moving forward,
with many thanks for and much love,
Barbara

(For the record, Fran Drescher did not have chemotherapy.  She was diagnosed with uterine cancer and chemotherapy was not part of her treatment protocol.  My fact checker, if I had a fact checker, would have caught that when this entry was originally posted).

Wednesday, March 31, 2010 7:05 PM, EDT

So I lasted until Saturday afternoon with minimal chemo side effects--and then they hit me.  Let's just say that I now have full  respect for chemotherapy.  I'm feeling much much better today--but Saturday afternoon, Sunday and Monday I had a strange combination of exhaustion, nausea, head ache and a general foggy-out of it-weak feeling.  Also, I somehow had this crazy expectation that I would start feeling better suddenly--on Monday, I had planned.  And, it just didn't work that way.  The side effects hit me gradually and are leaving me gradually.  J says it would strange if I didn't have any side effects--while I'm sure that's true--I think I could deal with that kind of strange. 
I'm feeling close to 100% today--and I should only be feeling better and stronger--until next time.  But, there's a lot of time between now and next week. . .

moving forward (with a new found respect for chemotherapy and people who have gone through it),
love,
Barbara

Tuesday, April 6, 2010 5:21 PM, EDT

I'm happy and relieved to report that I have continued to feel better and very much like myself since last Wednesday.  It's reassuring to have come through one round of chemo feeling good on the other side. 
I have my second treatment this Thursday. 
But, the bigger news is that I expect to start losing my hair this week.  I've been told that it should start to fall out anytime from 12-16 days after my first treatment.  So, in anticipation of that, I have scheduled my second wig fitting.  Instead of waiting and seeing when and how my hair falls out--I'm taking a little control here and having my hair taken off and my wig fit on Saturday.  So, if you see me after Saturday, I will have hair (or a hat or a scarf) on--just not my own.  I feel like the adults in my life are all expecting this, as I've always known that chemo and hair loss would be part of my treatment plan--but the children in my children's lives are not expecting my new hair.  So now is the time that my cancer becomes more obvious and more public.  I'm sure that there will be some questions--and I'm sure that every family will answer in ways that feels best to them.  But, I thought I'd share what my children know and that might help guide what you choose to share with your children. 
My children know that I had breast cancer.  I have an amazing surgeon, and I had surgery, and she took the cancer out of my body.  Now I need to take medicine every other week to make sure that all of the cancer is completely gone.  And, the medicine is great, because it knows exactly how to do its job and get rid of the cancer.  But, it will make me lose my hair.  So, I'll wear a wig or a hat or a scarf until my hair grows back. 
That all sounds so easy, right?  Not so much.  My hair loss has been particularly and appropriately hard on E--my sweet E of the long and beautiful brown hair.  First she is distraught that I will lose my hair and second, she is upset that now everyone will know our cancer news.  I think that it's been very safe and comforting for her to go to school everyday and not think or talk about cancer--she had asked that we only tell her teacher.  And, I've honored that, but now I feel strongly that my cancer is not a secret--it's really just a part of our lives for now.  And, if my children and your children see me around strong and happy and myself but with a wig or hat or scarf on, I feel like it all might be a very little less scary the next time (I hope it's a long time from now) they hear that someone has cancer.  I hope.
Or . . . maybe the wig will look so great--the kids will all just think that I finally got my hair colored and not ask about it at all. 

As always, moving forward,
with love and tremendous gratitude for the family and friends who continue to support me and my family,
Barbara

Thursday, April 8, 2010 9:07 PM, EDT

I had my second chemo treatment today.  Cross it off the list! (Doesn't it seem like I was just having my first treatment?)  A good friend (who just happened to do me the tremendous favor of having breast cancer and being treated at Sloan Kettering last year) reminds me that time flies even when you're not having fun--and it's really true.  And, sometimes, even most of the time, I am still having fun.   Tonight before bed, we all cuddled in bed as J read a chapter of "How to Train Your Dragon" to us.  Fun.

So treatment two--it's not really the end of the treatment cycle until the side effects subside, and I feel like myself again.  So I'm not there yet.  But, today was a great start.  First, it couldn't have been a more beautiful day.  And, second I was feeling so good I decided to walk to and from the Scarsdale train station.  I had many offers from friends for rides, but the weather was great, and I felt good.  It was so nice to be able to do something the "before chemo me" would do.  And, then, I love the train, I had all of that train time to knit.  I met Jay at Grand Central, and we went to the "Sloan Spa" together. 

Before my treatments, I always worry that my nurse, Jenny, will not be able to find a good vein for the IV--although she tells me frequently that I have "beautiful veins."  She is aware that I can't watch or hear about any part of the IV insertion (I pass out)--so today, as I reclined in my chair and watched an episode of 30 Rock on my new iPod iTouch (a generous gift from very dear friends), Jenny did her thing and put the IV in without any trouble.  I love that Jenny.  One hour later, I was done and Jay and I were in a cab to Grand Central.  Now I'll wait and see what and when my side effects will be this time. 

On Tuesday night I (in addition to worrying about my veins), I started worrying that my hair wasn't falling out.  I had thought so much about exactly when and how to go for my "second wig fitting," and my hair still wasn't falling out.  I thought it would be ironic and weird to show up with my wig and with my own fully intact hair.  But, as if on cue, and just as friends and my oncologist said, on days 12-13 my hair is slowly and gently failing out--one, two strands at a time.  It's not at all what I thought.  Not scary or freaky--even to E and A.  It's actually fairy like.  I have a lot of hair, and it's just gently "releasing" (I think the oncologists (or the wig guy) used that word for hair loss).  Now if I were writing a screen play and if Tim Burton were directing it (stay with me here, I'm on many anti-side effect drugs tonight), I imagine this surreal scene would have me in New York City with shiny brown and gray hair strands floating and following me around--I definitely had hair flying out the cab window and floating around me in Grand Central today and for sure on the walk home.  I'm not in denial here (although I do sometimes think of this whole cancer thing as completely surreal--and also sometimes as a screenplay), it is just such a gift that the hair loss is gentle and slow--for now.  And honestly, it is good that it has started.  It's all a sign that the chemo is working, and I really am ready for the wig--that I have lovingly named "Twiggy."   

Shocker--E hates the name.  A and E prefer "Pig the Wig."  Not an option. 
My wig, my name.

as always, moving forward,
with love and gratitude,
Barbara

Wednesday, April 14, 2010 9:25 AM, EDT

I'm out of the chemo fog!  Consider chemo treatment number two DONE! 

Funny thing about this cancer/cancer treatment is that it's full of surprises.  The side effects to the second treatment really weren't like the side effects to the first.  My oncologist had mentioned that the side effects might start sooner, last longer, or be more intense--not true this time.  If anything, they were slightly milder.  Surprise!

Another surprise of this whole cancer treatment journey was that going for my second wig fitting (euphemism for having my head shaved and starting to wear my wig full time) this weekend was not traumatic.  Hair releasing, second fitting--both such gentle euphemisms.

I had chosen my wig with J, E and A back in January.  And, I knew that E was very sad and nervous about me choosing to have my hair removed before it all fell out, and she was very nervous about seeing me in the wig.  And, I think Andrew was nervous too--just not as out there about it.  And, I was worried about them worrying.  But, really, the planning and anticipation were much worse than the actual event.  Surprise!

I went back to Bitz-n-Pieces (the wig salon where I bought the wig) with two amazing and funny and supportive friends.  And, Edward, my very kind stylist, really let us turn the event into a fun celebration of moving forward in this whole process--the sooner my hair falls out, the sooner it will grow back. 

It felt a little like a private party.  As Edward talked to me about the wig, the receptionists offered us coffee and cappuccino.  As Edward prepared my head, he complimented my head shape and let us interject our own silliness and commentary (How often do you have the opportunity to have your friends and hair stylist go on and on about the shape of your head and the perfect size of your ears?  Who knows what your head looks like under all of that hair?)    And, I must say, when it was all done, the consensus was I looked a little like Sinead O'Connor circa 1992.  Not too bad. 

Then, Edward styled the wig, put it on, gave me some maintenance lessons, and we were done and ready to go out to lunch.  I know that I say it all the time, but it really felt like moving forward.  Fast forward.  And, for all of the anticipation and worry, there were no tears.  Surprise!

(Or, at least no tears until Edward asked me if he could use my old hair.  He said he could put the hair to good use.  The idea of my old brown and gray hair being put to good use--that got me.  I loved that old brown and gray hair). 

So check out my new profile shot--introducing one of my many new (but temporary) looks of 2010!

moving fast forward, with love and gratitude,
Barbara 

Who is that woman?

Wig celebration

Friday, April 23, 2010 5:58 PM, EDT

Quick update.  I had my third chemo treatment yesterday, and I felt great throughout the day.  I kept to my routine of walking to and from the train (the weather held out--I wasn't looking forward to what the wig might look like if I got caught in the rain).  But then when I got home, I was exhausted.  There was a lot of waiting at Sloan yesterday that may have added to my exhaustion or just the cumulative effects of all of this chemo starting to kick in. 

I started to worry that my exhaustion that normally hits on Saturday night was hitting Thursday.  Thursday to Tuesday exhaustion would mean a whole lot of sitting around watching TV (some good and most very bad--Real Housewives Of New York, anyone?) and knitting (always good) until Tuesday night.  But, I slept it off last night and then napped again this morning, and I'm feeling back to my usual waiting-for-side-effects-to-hit self.

So that's the technical part of today's entry.  The very personal part of today's post is that I continue to be overwhelmed by the love and support that we continue to receive from our friends and family.  Car pools and play dates and meals (and organizing of said car pools and play dates and meals) and family dinners and quick lunches and emails and gifts--and just, in general, so many people staying in touch.  Overwhelmed is really not even an adequate word (and since I'm headed into chemo brain fog--I will be unable to access a better word until Tuesday). 

And, then there's the laughter.  There has been a lot of laughter too.  I have learned more of what I already knew; I have many very funny friends.  And, apparently a funny daughter as well.  Last week, I was coughing, and E said, completely dead pan "hair ball?"  A very funny joke given all of the wig talk going on around here.  Typically, the jokes are just your general bald, wig, and cancer jokes.  But, when we're laughing we're really and truly laughing--which is just plain fun and funny to be laughing when I could so easily be crying.  I'm so thankful for the laughter.

I have always tended to be a private and independent person--I just never could have imagined that so many people would not only volunteer, but insist on helping us out as we go through this temporary, but at times, very challenging time.  I'm also a planner--and really, there is no way that I ever could have planned on all of the support we have received.  It is really something I never could have imagined or planned--but I am truly thankful for every day. 

moving forward, and laughing,
with much love and many, many thanks,
Barbara

Thursday, April 29, 2010

It's official--chemo fog from treatment number three has lifted.  Three of the four first set of treatments down--one to go!  (And, then four rounds of another treatment).

On a lighter note, this morning E asked what time the woman who cleans our house would be leaving.  I said "Around 3:30--she'll be out of our hair before we get home." And, deadpan, my daughter said, with a preteen twinkle in her eye "but, you don't have any."
That's my girl!  And, that's why I'm (we're) still laughing. 

moving forward,
with love and gratitude,
Barbara

Tuesday, May 4, 2010

So this is what it’s like to be in my head on some days.  On Monday night as J and I were watching the news, we heard that Lynn Redgrave died.  I said “I wonder of what?” J said nothing—although he knew the answer.  Then the news report said “after a long battle with breast cancer.”  

I have this thing (obsession) with celebrities and breast cancer.  When I was first diagnosed my surgeon told me that I was a good candidate for a lumpectomy--followed by chemotherapy and radiation.  I did a little research on all the celebrities I could think of with breast cancer and decided I was Melissa Etheridge’s cancer twin.   I was going to have the same course of treatment as Melissa (and if she was okay, I would be okay too). 

Every time I thought of a celebrity with breast cancer, I would google her to find out her cancer type and course of treatment.  I couldn’t be Sheryl Crow’s cancer twin—she had a lumpectomy followed by radiation.  I wasn’t Elizabeth Edward’s cancer twin.  Or Christina Applegate’s.  Or Suzanne Somers’.  Or Cynthia Nixon’s.

I liked being Melissa Etheridge’s cancer twin.  I remember her singing with Joss Stone at the 2005 Grammys—bald and amazing and strong.  I drove around in my car singing (sometimes loudly) along with her song “I Run for Life.” When I found out that I needed a mastectomy, in a strange way, I was a little sad that I wasn’t Melissa’s cancer twin anymore. (Although, if the people from the Grammys come calling, I’m ready for my duet with Joss. . .)

Anyway, I have this thing (obsession) with celebrities who have had a similar course of treatment as mine and celebrities with breast cancer in general.  So the Lynn Redgrave news hit me hard—even though we were never cancer twins.  The news was sad.  The lights were dimmed on Broadway Tuesday night.

But, also on Tuesday night, on Glee—Olivia Newton John had a guest appearance.  She was diagnosed with breast cancer in 1992 and had a double mastectomy followed by chemotherapy.  Olivia Newton John is not my cancer twin, but on a sad Lynn Redgrave day, it was comforting to see Olivia Newton John looking great, singing in an updated, very funny video of “Physical” with Jane Lynch, and alive.  I must say, I was somewhat Glee-ful.

I go for my fourth chemo treatment tomorrow—the last of the first series of four treatments.  And, then there will be four more treatments of another type of chemo—also every other week.  Once the side effects of tomorrow’s treatment fade next week—I will be officially halfway done with chemotherapy—much like the many celebrity and many more non-celebrity women who have gone through this before me.

Moving forward, with love and gratitude,

Barbara 

Saturday, May 15, 2010 10:41 AM, EDT

It's official--I'm officially done with half of my chemo treatments.  I've said before that I don't consider myself done with a treatment until the side effects subside and the "fog" lifts.  This time the "fog" took a long, very long, time to lift.  Today I am finally feeling like myself.  So, four treatments done--cross them off the list!  I'm actually done with the whole first set of four treatments.  The next four treatments (also every other week) will be a different chemo drug with altogether different side effects. 

I somehow thought that at the halfway mark I would be a little more excited and celebratory.  J couldn't wait to celebrate--that's my husband, the optimist.  He brought home gelato and super dark chocolate Wednesday night for dessert to mark the occasion.  But, here's the weird thing.  I really didn't and don't feel like celebrating.  I know that halfway is a big milestone.  But, oy, I can't believe that I'm ONLY halfway done.  I feel like I've been sprinting through the first half of all of this.  After this last treatment my body and brain reminded me that I'm not running a sprint.  This cancer process really is a marathon--like the NYC marathon on an unseasonably hot day.  And, somehow, last week, I got stuck in Brooklyn. (Or, actually, stuck on the couch in my den knitting and watching bad (or good, depending on your perspective, TV)).

In my cancer marathon I have friends and family cheering me on the whole way--truly like the NYC marathon.  But, when it all comes down to it when the side effects hit--no matter how understanding Jay is (and he really is), or how resilient E and A are, or how smart my doctor is, or how beautiful the Sloan spa is, or how many delicious meals friends deliver to our house or take me out to, when it comes down to it, I am running the side effects on my own.  And, after this last treatment, this week the finish line seemed so far away.  But, today, as the fog lifts, I finally feel like I'm getting back up and ready to head over the Pulaski Bridge.  

(That was a very long marathon metaphor for someone who rarely runs and prefers yoga--but it really did seem to fit how I've been feeling).

But, whether it's a sprint or a marathon, I can't believe it's already the middle of May. And, for the most part, we're all doing things that we usually do in May.  Andrew is playing t-ball.  Elizabeth is playing soccer.  We celebrated Mother's day last week as a foursome in a very low key, but sweet way.  I started to cry as I opened my gifts and read the cards from the kids, and Andrew said "those are tears of happiness, right?"  E had her Spring Music Concert at school on Monday--she sang in the chorus and played clarinet in the band.  And, both E and A are super excited about going back to their summer camps this year. 

So, look out Queens, I'm ready to hit mile 14, and start the second half of this marathon. 

Moving forward, with love and appreciation,
Barbara

Tuesday, May 25, 2010

Last Thursday, I had my fifth chemo treatment of eight.  I am now 62.5 percent done with my treatments.  And, to me that feels so much better than half done.  

Half done, half baked, half assed. 

To me, five out of eight treatments completed feels so significant.  While I still take nothing for granted, and I fully respect the strength of the drugs that I get--after the three hour infusion I really felt like I had accomplished something great--something incredibly incredible--something like defying gravity.  Last week, in anticipation of being 62.5 percent done with chemo, I was singing "Defying Gravity"(from Wicked) in my chemo suite.  I'm often singing songs from that show--in the car, in the house, in Whole Foods.  So I was singing and somewhat euphoric and a little loopy too (which may have had something to do with the steroids I get before treatments to prevent any allergic reactions) in my cancer suite.  In addition to "Defying Gravity," I was also trying to write and sing lyrics to a cancer song set to the tune of Adam Sandler's "Hanukkah Song."  Truly, I was writing and singing about cancer in my chemo suite.

And, it goes a little something like this: 

"Sheryl Crow, she had ductal cancer in situ--she had a  lumpectomy with radiation--
just like Sarah Jessica Parker's friend--Cynthia Nixon. 
Melissa Etheridge had a lumpectomy--she needed chemo and radiation.
She's working hard to have pot legalized--as medication.
Forget the new recommendation--to start getting mammograms at 50,
I ignored them--and finding my cancer at forty was--nifty.
(chorus)
So go tell all your friends to get mammograms,
and they should also get sonograms. . .

You get the idea. 

So this time, I was euphoric and celebrating and singing and crossing number five off the list way before the side effects hit.

It turns out that like most people, my taxol side effects are general exhaustion and bone pain.  Mine lasted for two and a half days. 

A year ago, I was getting ready to celebrate my fortieth birthday.  Jay and I spent a great night in the city together.  And, then we spent a day in the city with E and A, and we saw Wicked.  We've been singing songs from the soundtrack since--"defying gravity" all the time.  But, last week, 62.5 percent done truly felt like defying some other kind of gravity. 

moving forward,
with much love and tremendous gratitude for all of the help that keeps the whole Mitchell family moving forward,
Barbara

Thursday, May 27, 2010

It’s not my typical form to cross any treatment off the list until the side effects have come and gone. 
But, this week, call me crazy, call me optimistic, “call me irresponsible, tell me I’m impractical,” I’m feeling good (a little tired, but good and very loaded up on steroids), and I’m crossing today’s treatment—number six of eight—off the list.  After this week’s side effects fade—hopefully by Wednesday—I will be 75% done with my chemo treatments.

Today was an easy day.  The three-hour treatment in my chemo suite, in the reclining chair, with the heated blankets, and the box lunch was very relaxing and restful.  Every time that I go to the Evelyn Lauder Breast Center at MSKCC I am reminded of how incredibly lucky Jay and I are to have such amazing health care.  “Call me unpredictable; tell me I’m impractical; these (health care) rainbows I’m inclined to pursue.”  You can even call me a socialist, but I truly wish that everyone in my situation had access to such phenomenal health care. 

I've said it before, but it’s worth saying again that I am incredibly happy with my doctors at Memorial Sloan Kettering.  Here are their names--again (although, I truly hope you never need to call them or refer anyone to them), Alexandra Heerdt is my breast surgeon—and general leader of my team.  I often say that I love her as much as I love J (I’m not kidding).  I knew when J and I met with her in January that she was the doctor who was going to make me healthy.  She honestly “had me at hello.”  I haven’t seen her in months, and when we spoke this week (she returned a call of mine from her cell phone on Tuesday night at 5:45 to help me clear up some reconstructive surgery scheduling questions), she casually asked how my knitting was going.  My knitting!  I think that Alex Heerdt has seen me knit twice in her office.  She is an amazing doctor, a wife and a mother of three--and she remembered my knitting--and she also asked about our family vacation in Maine at the end of August.  I love her (as much as I love Jay.  He knows that I do, and he's okay with it.  He likes her a lot too). 

And, equally as fabulous, Gabriella D’Andrea is my medical oncologist.  These strong, smart, caring women (and mothers) and their nurses have turned me from a complete health pessimist--some (Jay) might say hypochondriac--to an optimist.  They have made this entire process completely tolerable.  They both independently remind me that we’re all doing everything that we’re doing (surgery, chemo, radiation) so that I live to be 90 years old.  Ninety years old!  
And, I believe them, I truly in my head and heart believe them, and I’ll take their goal of 90 years old. . . as long as I can look and sound as good as Betty White.  Betty White, at 88, hosting Saturday Night Live--that’s what I’m going for.  I've been thinking a lot of Betty today as she lost her last "Golden" friend, Rue McClanahan (76, diagnosed with breast cancer in 1997).  She died from a stroke (NOT from breast cancer) yesterday.  You’d think that I’d take this opportunity to quote or sing the "Golden Girls" theme song—I’m not feeling it tonight--no singing.  Instead, I’ll just say, rest in peace “Blanche Devereaux.”

Moving forward, with love and gratitude,

Barbara

Thursday, June 17, 2010

Seven down . . . one to go. 

I always say that I like to wait until my side effects subside to update CaringBridge, but the funny thing about this treatment is that there was no time for side effects.  We have been super busy with so many good things and happy celebrations that I had a hard time letting this treatment get me down.

I realized that so much of feeling good during the times that might not always feel so good is just showing up and being there--for E and for A and for J and for me too.  So side effects or not--I put my wig on, swiped on some lip gloss, smiled a big smile and got myself to all of the end of year parties, picnics, soccer games, camp preparations, friend's birthday celebration, and father's day.  And, really, the being there was great.  I can't imagine having missed any of it. 

But, today is an official full day of rest . . . so I can be ready to get E on the bus for sleep away camp on Friday and get A ready for day camp on Monday. 

Cancer or no cancer, our family beat goes on . . .

moving forward (87.5% done with chemo),
with much love and gratitude,
Barbara

Leaving for the Camp W. bus

Andrew's first day of camp

Thursday, July 1, 2010

Side effects notwithstanding, I am officially done with my eight chemotherapy treatments today.  100% done.

I feel like Ann-Margret in the opening scene of "Bye, Bye Birdie," but I'm singing "Bye, Bye Chemo."  I feel like Sarah Brightman singing "Time to Say Goodbye."  I feel like Patti Smyth singing "Goodbye to You." 

But, I didn't feel like that this morning.  I've been looking forward to July 1st as a huge milestone day for a long time.  But, this morning, it was July 1st, and it felt like just another day in my new life with cancer--when a cancer treatment seems like just another day.  My odd new reality.

Sometimes when I have a minute to myself, and I think about it, it all still seems so crazy to me that I had cancer.  I had four surgeries; I had eight chemotherapy treatments; I will have reconstructive surgery and I will have radiation treatment.  Crazy!  
Sometimes it's hard to believe and harder to remember how I got from learning about my diagnosis in December to today.  Cancer, really?  It sometimes still shocks me that this is my life.  I know that I had cancer, and I know that I've done everything I can so far to prevent a recurrence.  It's sometimes hard to believe.  It just feels like a weird game of my brain catching up to my body.

My body has been going through the motions of getting myself to Sloan Kettering and handling everything that MSKCC throws at it (thank you, body for getting through the treatments).  And, my brain has put blinders on to keep me focused.  On my chemo treatment days, I had a set routine.  No matter what time my appointments were, I left the house at the same time; I took the same train; I bought the same sandwich for lunch; I asked for the same chemo nurse; and I had my kid(s) go to the same friend's house after school/camp for all eight treatments.  The routine is not as much superstitious (or OCD) as comforting.  There's something very comforting (and maybe a little OCD) in having all of the little details decided in advance. 

So now with both kids happily at camp (it's yet to be determined who is happier, me or them, or maybe I'm so happy that they are so  happy)  I have a little time to really let my body heal and let my mind start to catch up to everything that's happened in the last six months.  I know that catching up will take a long time; a lot has gone on.  But, I've got time.  Like my breast surgeon said "we're doing all of this so you can live to be 90."  Lots and lots of time.

I still have ahead of me what I call my "final one third of cancer treatment."  I have an out-patient reconstructive surgery set up for the end of July.  And, radiation treatments scheduled for September.

Some days I look in the mirror, and it's hard to believe that the bald person (think Demi Moore in GI Jane) with thinning eyebrows (and yet remarkably good skin--a chemo bonus) looking back at me is really me.  Truly, my brain has a lot of catching up to do.  And, by the time I've adjusted to just being a person who had cancer and was treated for it, my hair will be back.  And, I will look in the mirror and I will look like me again--on the outside. 

as always,
moving forward,
with love and gratitude,
Barbara

Thursday, July 22, 2010 8:10 PM, EDT

I drive an SUV--a red Toyota Highlander with an Obama magnet on the hatch back.  But, this week as I drove around doing errands and getting ready for Elizabeth’s visiting day at camp--in my head I felt like I was driving a red mini cooper convertible—with the top down.  (Ironically, J and I rented a red convertible on our honeymoon I would NEVER let him put the top down.  I was afraid it would ruin my “honeymoon hair” whatever I thought that was).  Anyway, in my head this week, I’m driving with the top down--not worrying about my hair (chemotherapy has put that all in perspective) meeting friends for coffee, running errands, getting ready for Elizabeth’s camp visiting day.  And, I’m listening to and singing U2’s “Beautiful Day,” “Walk On,” and “One”—over and over and over.  I love Melissa Etheridge, and I loved singing “Run for Life.”  And, I feel like a part of me will always sing it.  But, this week, it feels good to have “Beautiful Day” stuck in my head.

And, really it is a Beautiful Day/week—my chemo side effects are slowly lifting, I am running errands that I was too tired to run last week, I am getting ready to drive to Maine and see my girl on Saturday, I am having lunch with friends (I saw the sheep in the meadow at Stone Barn—that alone made it a beautiful day), I am starting to feel like me again, and here’s the big news—my hair is slowly starting to grow back.  Very slowly, very soft, blond (or gray, I say blond) baby hair.

My wigs have been great—the wavy wig, “Twiggy,” the straight wig, “Louise,” and even the baseball cap with hair attached to the back (unnamed) have all served me well.  But, get ready, because the day that this baby soft, short hair is ready for the public, the wigs are coming off.  Picture Annie Lennox circa 2003.  And, the songs I’ll be singing then. . .

moving forward,
with love and gratitude,
Barbara

 

What's Old is New

A continuation of uploading the old CaringBridge posts:

Last year--Mohonk Mountain House

Friday, February 26, 2010 9:35 PM, EST

Finally, a posting from me and not Jay.  Although, he was doing such a great job--I'm tempted to let him continue. 

I have an update--although my lumpectomy and lymph node removal went very well--when my lab report came back, my surgeon (Alexandra Heerdt) did not have clear margins (no cancer cells) on my tumor site.  Since that report, she has done two more re-excision in an effort to ultimately get clear margins.  It made sense to continue with the re excisions, because prognostically it makes no difference if the surgeon achieves clear margins on the first or fifth excision.  However, my tissue samples still have not yielded clear margins--so my surgeon is very clear that I should have a mastectomy.  This doesn't change my prognosis at all--it just changes the mechanics of how they get the cancer out of my body.

I'm all scheduled for the first surgery of the day on March 8th--I love being the first surgery on a Monday--I'm not being sarcastic--I really do.  And, then, for sure, we will have clear margins. 

On one level, it is incredibly disappointing.  I really thought that after three surgeries I would be clear.  And, I had really planned on starting chemo the first week in March--and this sets me back a little.  It's so funny, you know that your life has been turned upside down when you can't wait for chemo to start.  But, on another very practical level, I'm very at peace with this procedure, because I will not have to worry about rogue cancer cells left in my breast. 

J and I met with my oncologist (Gabriella D'Andrea) on Tuesday, and we both thought that she was fabulous.  I'm very lucky to have two incredibly smart and kind women (and mothers) taking care of me.  We didn't have the re excision report at the time, but she indicated that she is ready to start chemo one to two weeks after the mastectomy.  So, "my plan" still isn't set too far back.  I mention both of my doctors by name, because I just want their names to be out there.  When I was first diagnosed, I had a friend who was just completing treatment at Sloan, and it was so incredibly helpful and reassuring to have names of good people.  So, I mention them--but really hope that you'll never need them.

So that's all of the cancer news.  The bigger family news is that E is turning 10 tomorrow!  Yes, double digits.  We are going to Mohonk Mountain House for the weekend to celebrate.  She is so excited--and so are we.  It will be a fun and snowy escape for all of us.  So Happy 10th Birthday to E!

And, as always, thank you for all of the e-mails, calls, help, meals, gifts, love and support.  I can't imagine going through all of this without all of you.

Moving forward,
with love,
Barbara

Monday, March 8, 2010 1:57 PM, EST

Just wanted to post and let everyone know that Barbara is out of surgery and doing well. She is sleeping but I was able to speak with her for a few minutes. She had a mastectomy and expander put in (to make way for an eventual implant). They were pleased to be able to expand the tissue double the normal level due to her flexibility in her chest muscles. She is on a morphine drip for pain now but intends to go home. They will probably let her by this evening since we have a nurse coming to our house for tonight and tomorrow. Thx to all helping out today with the kids and for everyone’s kind wishes and food.
J

Friday, March 12, 2010 6:31 PM, EST

Hi everyone--just a quick update.  Since I came home on Monday night I have been feeling stronger and better everyday.  After so much anticipation and anxiety about the mastectomy--I have to say that I just feel so relieved to have it behind me.  It was so great to know that I was leaving the hospital this time with clear-cancer free margins.

I've been taking it super easy for this recovery.  I've been spending a lot of time in bed watching movies and reading books and knitting.  But, today I felt good and strong enough to drive and pick the kids up from school.  Although, E and A have loved the walks and drives to school with friends and all of their play dates--it was nice for us to have a drive home and a lazy afternoon together.

I have a post op appointment with my breast surgeon and with the reconstructive surgeon on Tuesday--and if all continues to look and heal well, I am scheduled to start chemo on March 25. 

Thank you, thank you, thank you everyone for taking such good care of me and J and E and A.  I feel like it's still the beginning--but all of your help and meals and soups and play dates and carpools and DVD's and phone calls and magazines and e-mails and notes mean so much to me--and have really helped us all get through what I call the "first trimester" of my cancer. 

Moving forward,
With many thanks and much love,
Barbara

Last year because of my surgery schedule, we had to cancel our Caribbean vacation plans, and we made the weekend trip to Mohonk.  This year, no skiing, no snow--we're going to Punta Cana in February.

Punta Cana 2009

And, I can't wait!

In with the Old . . .

That was then . . .

True to my plan, I'm re-posting all of my CaringBridge entries.  So that all of my entries can live here together.  I'm starting with just the first few.

It's an interesting "scrap book" of the year.  The initial posts written by Jay and then later by me were so clinical.  And, then over time, I see that I really started to use CaringBridge to share and also process all of the craziness of the year.  

It's funny, I don't get emotional at all when I re-read the posts on the posts on my surgeries and my mastectomy.  Even the chemo entries seem so distant now.  Looking back, it turned out that once I found my surgeon, the surgeries were easy.  But, re-reading the posts about E and A . . . and reading about those days of trying to figure out how to help them deal with all that was going on . . . I sit at the computer just like I did when I originally wrote the entries, with tears running down my cheeks and onto the key board.

Cancer, manageable.  Cancer with small children was and continues to be challenging.

January 2010

I was diagnosed with breast cancer in December 2009.   We all have a story.  This is the beginning of one chapter of my story.

January 26, 2010
As I'm getting ready for surgery tomorrow, I'm overwhelmed by how much support and love I have gotten from family and friends.  It means so much and has really kept me going through what seems to have been a very long wait from diagnosis to surgery. 
It's going to be difficult to keep in touch with everyone on an individual basis this week--so please check in on this website.  J and I will try to update it often.
With much love,
Barbara

Tuesday, January 26, 2010 5:25 PM, EST

I just got the scheduling phone call from Sloan.  They need me to arrive at the hospital at 9:00; they'll do a small needle procedure at 10:30, and then surgery at 1:00.  J will be with me during the down time between 10:30 and 1:00. 
So that's the latest--we'll keep you posted . . .
much love,
b.

Wednesday, January 27, 2010 9:55 AM, EST

Hi all. We've arrived at the hospital. Barbara is now getting prepped (iv and paperwork, health care proxy) and then it's off to get a locator put in so they know exactly where to operate. It's not as nice here as at the Sloan spa on 66th street but this seems to be the original hospital site. Keep you all posted. - J

Wednesday, January 27, 2010 1:46 PM, EST

Barbara was just taken by the surgeon (Dr. Heerdt is always so cheerful) and she says it should be about 90 minutes until they are done. At that time, I should be able to see her as she wakes up. Barbara was a bit upset that the 3 other women here today are just having a lumpectomy with no lymph node involvement (so they think I told her). Anyway, she didn't have too much time to dwell on that as she was whisked off to first meet the anesthesiologist and then by Dr. Heerdt to enter the OR. Will keep u all posted once she comes to in recovery.
TTFN

Wednesday, January 27, 2010 2:43 PM, EST

Bs surgery just finished. Dr. Heerdt came out to tell me that there were no surprises (that's good bc we don't need any) and that everything is removed that could possibly be an issue. They won't have pathology for a week more but aside from the one lymph node we knew about, the others seemed to at least look normal and in any event, they're all gone with what they think are sufficient margins. I should be able to go into recovery shortly. Will post again once I actually get to see her. Thanks to all for the help and goo wishes.
J

Thursday, January 28, 2010 8:51 PM, EST

Just want to post and let everyone know that Barbara is doing very well post-surgery.  Although tired and in a little pain, she was up and about today and able to eat and even do some of the arm exercises.  Thanks to all of you that have sent flowers, food and gifts.  We can't tell you how much we all appreciate this.  We haven't had to cook at all since we've been home and our house looks and smells great with all of the flowers.  And we are all touched by those of you who have e-mailed (she is checking regularly now) or called to say you were thinking of her or wanted to know if there was anything we needed.
J 

Saturday, January 30, 2010 8:20 PM, EST

January 30 - 3 days post-op
Barbara continues to get stronger and is doing very well post surgery.  Today she was able to shower for the first time (although a little reluctant to do so).  She is already able to master all of the arm strengthening exercises (that I think some people can't even do pre-surgery) thanks to all that yoga.  She is a bit freaked out by having to carry that drain thing around (which catches all of the fluids due to the lymph nodes being removed) but that should come out within a few days.  I do all of the drain stuff so she doesn't have to deal with that (for those of you who don't know, Barbara often passes out at the sight of blood).  Apparently, I am much better at that than I am at fluffing pillows and loading dishwashers.  Today, Barbara also stayed home and rested for a few hours by herself while the kids and I went off to the movies.  The kids were thrilled to see the "Tooth Fairy". 

The kids are doing just fine.  Many have volunteered to take them for after school play dates in the coming days.  Some have bought them activity gifts (which they don't understand really is a gift for Barbara) and they have kept themselves busy for hours.  Although I don't wish this upon anyone, it really has been good for them to see how others around them react to someone close to them getting sick.  Someone said to us at the beginning that it would be difficult for them, but not damaging. 

I go back to work on Monday.  The plan is for me to take the kids to school in the morning and then we have friends that have volunteered to help out in the PM for the first few days.  Barbara thinks she'll be able to drive by the end of next week.  She'll probably be somewhat relieved to have me gone during the day -- now that I've read that Anti-Cancer book, I think I'm making her crazy with the no sugar, green tea, turmeric diet. 

We have a post-op appointment with the surgeon on Feb 11th.  That's when we'll get the full pathology report and discuss next steps.   We've been told that they don't really want to discuss chemotherapy or radiation until they have that report.  We know that they won't do anything more for 4-6 weeks to allow the body to fully heal from the surgery.  So, that's the plan for the next few weeks.

Thanks again for the support from all of you!!  We really do appreciate it.
Jay

Friday, February 5, 2010 9:26 PM, EST

So, it’s been about a week since the last posting, so I thought I would do a quick update.  Barbara has made a pretty amazing recovery.  She's back to driving and taking the kids to school and even doing and having a few home repairs done.   By looking at her, you'd never know she just had surgery.

The initial pathology report came back this week and the news was very good (at least the docs at Sloan seemed pleased).  The tumor removed was under 2cm in total size (which is apparently good).  And there were 2 lymph nodes affected out of the 19 removed -- the sentinel node (which we knew going in) and a trace in the next node.  We're not exactly sure what this all means just yet, but it will likely impact the next stage of treatment.  Speaking of next stage, we have our first visit with the oncologist scheduled in about 2 weeks (to discuss chemo).  We also have a follow-up visit with the surgeon this week to make sure all is healing well and remove that annoying drain.

For the next few weeks, Barbara will be getting back to her normal routines, trying to get as strong as possible before she has to start chemo.  I'm sure she'll be getting back to yoga as soon as she can.  She's been really trying to eat even healthier -- avoiding most white flour and sugar (which feed the cancer) and drinking lots of green tea, eating more fruits/vegetables and eating lots of turmeric (that spice in Indian food which is apparently great for fighting breast cancer).  It's apparently very important to walk 1/2 hour a day, so we'll likely be getting a treadmill so that she can do this daily.  All of this is supposed to make the chemo easier and more effective.

The kids have been doing well too.  Our kids are not used to having others drive them to school or take them to after school activities, so this was an adjustment for them.  E has now been picking A up at his classroom to make it easier for Barbara to pick them up at school.  Their teachers have both been great throughout all of this and have taken the time to give both of them a little bit of special attention.

*******************************************

So that's the update for now.  We'll continue to keep you all posted.  Thanks again to all of you that have provided your support and love.  
Jay 

A year later . . .

This is now . . . Happy 2011!