Memorial Day

posted Monday, 29 May 2006

What better way to spend Memorial Day weekend? I drove up to Ithaca on Thursday night, taking a four day weekend, which I desperately needed. My dear friend, Katie, who lives in Rochester, was going to come down on Friday to spend the day with me. Mike was working, so this was quite perfect.

I met up with Katie, Tim, Bridget & Emma for lunch at the Ithaca Bakery and then we went over to spend the afternoon at the Sciencenter, where we got to see baby snakes hatching and play on a giant swing... despite the drizzle, we had a blast! Dinner at the ABC Cafe was yummy, with lots of veggie options. Tim, Katie and I split a bottle of wine, which tasted so good that we decided to stop for another bottle on the way home. Since Mike was moving on Saturday and his entire apartment was packed, we were smart enough to think to buy a cheap corkscrew. Well done! We were not, however, smart enough to realize that he had absolutely no glasses to pour the wine into. So it was either: pour the wine into the empty beer bottles (from the boys) or swig it straight from the bottle. The answer was obvious.

So, we spent the evening watching Sound of Music on the big screen (Mike has a projection tv, which I, at first, questioned the practicality of... but over time, have come to love...), sitting on a mattress on the floor, swigging wine straight from the bottle.

Speaking of the Sound of Music... there is lots of fun on the internet...


Sound of Music Ringtones - who wouldn't want their ringtone set to 'the lonely goatherd'?

Sound of Music Lyrics - so you can sing along like a pro

Sound of Music Drinking Game - if you feel like misbehaving (not that I would condone this)

Sound of Music Trivia - to see just how much you know




Emma & Bridget playing at the Sciencenter



More fun at the Sciencenter & hanging out at the docks at the farmer's market





Otis apparently does not want his picture taken...



I don't understand why because he is darn photogenic... how cute is he?



Tim & Emma... tired and ready to go home...




I have confidence...

What would this day be like, I wonder
What will my future be, I wonder...

It could be so exciting
To be out in the world to be free
My heart should be wildly rejoicing
Oh what's the matter with me

I've always longed for adventure
To do the things I never dared
Now here I am facing adventure
Then why am I so scared

Captain with seven children...
What so fearsome about that

Oh I must stop these doubts all these worries
If I don't I just know I'll turn back
I must dream of the things I am seeking
I am seeking the courage I lack

The courage to serve them with reliance
Face my mistakes without defiance
Show them I'm worthy
And while I'll show them...I'll show me...so...

Let them bring on all their problems
I'll do better than my best
I have confidence they'll put me to the test
But I'll make them see I have confidence in me

Somehow I will impress them
I will be firm but kind
And all those children, heaven bless them
They will look up to me and mind me

With each step I am more certain
Everything will turn out fine
I have confidence the world can all be mine
They'll have to agree I have confidence in me

I have confidence in sunshine
I have confidence in rain
I have confidence that spring will come again
Besides which you see I have confidence in me

Strength doesn't lie in numbers
Strength doesn't lie in wealth
Strength lies in nights of peaceful slumbers
When you wake up, wake up!

It tells me all I trust I leave my heart to
All I trust becomes my own
I have confidence in confidence alone...

I have confidence in confidence alone!
Besides which you see I have confidence in me...

Comments:

MOM MADE THIS COMMENT,
Looks like you had a great time with Katie and her family. Who wrote the poem?

MANDY MILLER MADE THIS COMMENT,
What a WONDERFUL poem! Thank you for sharing it... for some reason today I needed a reminder to 'live for the moment' and this was just the kick in the pants I needed. Thanks!!! -Mandy

LINDA CASILL MADE THIS COMMENT,
The poem is the song that Maria sings as she heads off on the bus to Captain Von Trappe's house with her guitar... Mom, Mandy - I order both of you to go watch the Sound of Music! You are too rusty!

Race for the CURE

posted Sunday, 14 May 2006

The outpouring of support that I experienced last year when I decided to participate in the NJ Race for the Cure was truly amazing -- I am long long overdue in thanking you.

Through your generosity, my team - "Ain't Nothin Gonna Break My Stride" raised over $6k! That translates into funding over 600 mammograms for uninsured women! Thank you thank you thank you!

In 2005, the NJ race itself was cancelled, due to 7 days of heavy rains. Many members of my team joined me for breakfast that morning to celebrate anyways.

This past weekend, I had the opportunity to walk in my first race, crossing the river to participate in the Philadelphia Race for the Cure. With over 45k people turning out, including over 5k breast cancer survivors, the event was unbelievable.

Imagine wading through the crowd and then climbing the steps of the Philadelphia Art Museum where the "survivors" are gathered... searching for your friend among the thousands already gathered there... and finally seeing her... with her beautiful bald head, smiling and waving back at you...



Imagine standing on the steps of the Philadelphia Art Museum... and looking out over the streets below to see thousands upon thousands of people who got up at the crack of dawn to come out and support this cause....



Imagine getting up at 6am - cabbing it across the city in the cold, gray morning (fingers crossed that it doesn't rain) - walking the 5k course among the masses... seeing the families & friends banding together to support loved ones in treatment or to honor the memory of loved ones who fought the good fight... trying not to cry... thanks Abs for going with me and sharing this experience...





I want to thank all those who joined me last fall and this spring for the Race, either by joining my team or by contributing to the cause, including:


Abby Schock

Abigail Thomas + friends

Aja Nichols

Ali Akbar

Alicia Dunne

Andrew Loughrey

Arthur & Norma Larosee

bert kolaski

Brandon Silverman

Bonny Hodges

Brian Boger

Cristal Chan

Daniel Kirshner

Dean Kameros

Deborah Schein

Debra & Bill Casill

Donna Bell

Dylan Klein-Denk

Elizabeth Thompson on behalf of Founder's Section Women's Ultimate

Elizabeth Thompson

Eric Schlesinger

Eugene Atwood

Glenn Sabin

Howard Deutsch

Irene Wong on behalf of TRUDGE

James Adelizzi

James Casill

Jeff Gold

Jeffrey Chung

Jen Freeman

Jen Maupin

Jennifer Cohen

Jessica Jarvis

Joseph Chapman

Julie Gabrielli

Kaori Yamada

Karin Hunziker

Katherine Turnamian

Kathryn Mousaw

Kathy Ambrose

Kathy Houser

Kevin Conover

Kristen Geary

Kristine Norgren

Laura Begert

Laura Konieczny

Lauren Hlavaty

Lynne Simson

mark wachter

Mary , Charlie Ferretti

Marye Casill

Matt Natale

Maura Flight

Meryl Klein

Michael MacDougal

Michael Jaeger

Michael Vogel

Mihaela Ugarcovici

Mike Schlamp

Nancy Kijowski

Nancy Scheraga

Patricia Casill

Peter & Meg Hale

Prasanna Sridharan

Pratap Khedkar

Rasika Dhamakar

Renee Grabelle

Rich Sanda

Robin Grapkowski

Ronda Wells

Sara Gifford

Sarah Koegel

sarah jarvis

Sherrie Barone

Stacy Sarvis

Steve Lahet

Steven Traub

Susan Drummond

Susan Pearson

Tara Konzelmann

Tate Allen

Terry Gifford

Tim Shalizi

Tina Schlesinger

Tracy Herman

TYCO Matching Gift

William Jakobowski

William Coyle

William P. Zupko

stolen choices

posted Monday, 1 May 2006

I typically like to keep my blogs focused on the positive - those who love me and the strength that I have derived from their love. Your friendship and support is what has gotten me through this journey in one piece. I am now done with treatment, cancer-free, back at work... one might even suggest "back to normal". The battle may be over, but I am starting to realize that the war may never end. Cancer will be a part of who I am for the rest of my life. And sometimes that really sucks.

I went in for my annual appointment with my gynecologist today (don't worry, I will spare you the details). Girls, I'm sure you'll all agree that this is never a fun trip. Little did I know just how difficult this trip would now be for me.

First, this is where it all started. I can remember sitting in this very waiting room, unsure of what this lump was... waiting for hours after my visit with the dr so that they could squeeze me in for an ultrasound... and so the journey began...

While I was there, I also had to go in for a pelvic ultrasound, screening my ovaries for ovarian cancer (due to my BRCA 1+ status, I am at high risk for ovarian cancer and need screening every six months). They call me back and I change into the gown. He begins with an external ultrasound, lubing up my belly with gel and firing up the machine. As I lay there, my head to the side so that I can watch on the monitor, I am suddenly struck by just how messed up this scene is. It's just like they show on tv... but instead of smiling... crying... and seeing my first glance of my unborn child.... I am looking at my shrunken ovaries... making sure there are no signs of cancer. Tears that rarely surface find their way to the edge and trickle down my face. There is noplace to turn, without being bombarded: framed ultrasounds on the walls, an advertisement to purchase a video of your baby's first ultrasound, the happy, expecting women in the waiting room... this place is a young cancer survivor's worst nightmare.

I finish the ultrasound early (half an hour before my dr appt) and head out to the parking lot to release. Mike, who to this point has not seen me cry (despite becoming one of the closest friends in my life... during one of the most trying times of my life), receives my desperate phone call. He is actually on his way out of town (after visiting for the weekend) and offers to take a detour on his way home to spend the afternoon with me (my dr is over an hour north of my house, so not totally out of the way... but really not on the way either).

After a 20 minute break from the madness, I dry my eyes and head back into the waiting room. Heck, I've been through so much this past year... what's one more trial? They call my name and I head back with the nurse. Weight and then into the room for blood pressure. She kindly tells me how they have all been thinking about me so much over the past year. The tech who did my initial ultrasound has asked how I am doing... and again, I am broken. Thank goodness for the drug reps who leave boxes of tissues for the docs... whether they influence prescribing, I don't know... but they did come in handy.

I know that most of my blog rings forth with sounds of bravery and triumph. I haven't written in a very long time because I could not bring my self to think about this event... though I could not just skip over it either. Only time will tell if my ovaries were tough enough to withstand the poison my body was doused with. This definitely stands as the most emotionally challenging hurdle this journey has placed in my way. I know that the outcome does not define whether or not I will have a family. There are plenty of children in the world in need of love. I just wish that this choice was one that I was allowed to make myself.

Comments:

1. Katie left...

Monday, 5 June 2006 10:37 am

Thank you for being honest and sharing this experience on your blog. This is real and this is part of it. Pain is part of this journey; hearing you acknowledge your sadness and anger is good to hear, a relief to hear. It doesn't make you less brave or not optimistic, it makes you real, and even more lovable. What is that saying...a well behaved woman never changed history...or something like that. (Also, your curls cause you to be more lovable as well)

FIRST FOLLOW-UP

posted Thursday, 13 April 2006

Today was my first quarterly follow-up visit with my oncologist... How odd it felt to be back in that office that I frequented so often last fall.

It was like deja vu as I headed back to the lab for my blood work. It appears that my veins are beginning to heal, making this a rather uneventful experience. In addition to standard blood tests, I had an additional test called a CA-125 test (this is a protein that can be made by abnormal ovary cells and is used to help screen for ovarian cancer). Because of my BRCA 1+ status, I am also at high risk for ovarian cancer. Unfortunately, there really is no good way to screen for this (even the CA-125 is often inaccurate)... but I suppose this is the best we can do.

Next I saw the nurse for my blood pressure and weight. I think she was surprised to see that I had put back on all the weight I lost during chemo (and then some!)... I guess I hide it fairly well!

Finally I go in to see Dr Cairoli. He examines me and we discuss the ongoing screening. I had heard from some others that even with a mastectomy, they sometimes offer/recommend radiation (typically, you get radiation after a lumpectomy). Over the past few months, I had been thinking a lot about this... should I ask for radiation? (Am I crazy to want more treatment?) It feels so good to be done, but I do not ever want to look back on this and wonder "if only I had done the radiation..."

What I had heard was that with mastectomy, the recommendation is based on the # of + lymph nodes:


3+ radiation of the node field & chest wall

1-3 optional radiation (not necessarily recommended)

0 no radiation (risks outweigh the benefit)


I fall into the 1-3 range, where it is not really recommended, but sometimes offered. Dr Cairoli clarified the guidelines for me. He said that with 1-3 lymph nodes, radiation is only recommended if the tumor was very large (>5 cm). He really felt that the risks of the radiation would outweigh the benefits that I would receive, therefore he would not recommend it. After discussing it, I was comfortable with this recommendation and could put the issue to rest. I've done everything I can to fight this with the information that is available at this time and I can not/will not question that further.

We wrap up the appointment and schedule my next visit. On my way out, I stop by the treatment room to say hello to the nurses and show off my curls. It's like a big reunion party. It's kind of strange, as I look into the treatment rooms, knowing that that was once me sitting in those chairs... and in all honesty, it could be once again.

I now have to wait a few days for my bloodwork to come back. This is fairly excrutiating. Why is it taking so long? Finally, Dr C calls and lets me know that all of my tests came back normal. It is really a huge relief. I can't believe that I will be going through this every 4 months. The waiting game is frustrating, nerve racking and emotionally exhausting. It is hard to keep from thinking about "what if", but for now, I will try to focus on "what is".

SPEAKING OUT

posted Thursday, 6 April 2006

Tonight I attended a training for the Komen Foundation Speaker's Bureau. The Komen Foundation Central & South Jersey Affiliate runs the NJ Race for the Cure and has granted to hospitals and nonprofits to fund education, screening and treatment for the medically underserved.

The Speaker's Bureau volunteers lead discussions on breast health and the Komen Foundation. I am excited to begin giving back by spending time helping the foundation & becoming an advocate for women in NJ.

If you are interested in doing more, become an advocate- you can start small by emailing your Congress-person about pending legislation to fund screening and research for breast cancer. The website makes it super easy!

If you are interested in having somebody from the Komen Foundation (me?) come and speak to your group in Central or South Jersey, please let me know!


Komen Mission - To eradicate breast cancer as a life-threatening disease by advancing research, education, screening and treatment.



Central & South

Jersey Affiliate Vision - To affect a meaningful reduction in the percentage of late stage diagnoses of breast cancer through aggressive education and screening

Fill 'er up!

posted Thursday, 9 March 2006

Today was another follow-up appointment with Dr Borah.  At my last appointment, two weeks ago, we discussed beginning to fill up the expander on the right side.  Since I was heading out to Denver for the conference that weekend, I decided to hold off (plus, I didn't want to risk losing that expander too, by stretching the skin too quickly).  Today, we began.

First, Dr Borah took this small plastic contraption that had a small magnet hanging from a string in the middle of it.  He slid the doo-dad around on my skin until the magnet was hanging straight down, signifying that it was directly over the metal port in the expander under my skin.  He approached it from several directions, marking up the spot with a purple marker.  Finally, we were ready to begin.  An IV bag was hanging behind me, filled with saline.  The tube led down to a split -- one direction went to a syringe and the other direction went to a needle.  He filled the syringe with 50 cc's of saline and then stuck the needle through my chest into the port.  It felt very strange.  Not really painful... just weird.  Like pressure.  He slowly pushed in the syringe, forcing the saline into the expander that is burried under my pec.  Weird!  He told me that we would stop as soon as I felt "vague discomfort".  I stopped him almost immediately... he called my bluff.  We finally agreed to push in the entire 50 cc's and even added 10 cc's more.  I probably stopped him too early, but I am travelling to Minneapolis for a wedding this weekend and really don't want to be uncomfortable.  Plus, I'm really not in a rush, seeing as how the left side is going to take another surgery... so slow and steady...

Oh!  I almost forgot to tell you all about my trip to the Totally You boutique down by the shore... Charlene's cousin owns the store and we went down a week ago to look at prosthetic breasts.  Yes - it's true... after all these years, I have finally decided to start stuffing my bra!  I didn't mind being small... but I at least want to be even (at least when I am out in public).  Since I was unsure about how long I would be uneven for (whether I am going to have the surgery in May or wait until next winter), I didn't want to spend too much on a prosthetic.  They range from ~$45 for a foam insert... to $400 for a realistic looking silicone breast.  They sell bras, camisoles & swimsuits with pockets in them to hold the prosthetic.  In the end, I settled for a weighted foam prosthetic (it's weighted so that it doesn't ride up in your shirt).  It was pretty weird to wear at first, but I am getting used to it.  If I decide to hold off on surgery, I think I will go back and get a nicer piece... but this will do for now.  I've decided that she needs a name though... any suggestions (keep in mind, my grandparents read this blog, so keep it clean, will ya!)?

So anyways, between my A cup prosthetic and my slightly inflated expander, I am almost even... in fact, I would be surprised (and curious as to why they are staring) if anybody could really tell the difference.  Now that I am getting used to wearing it, I feel nearly 100% comfortable and natural, which is really a great thing.

Comments:

1. susie left...

Thursday, 23 March 2006 8:05 pm

how about Patti, kind of like "paddy"--get it, like a padded bra?

BACK TO WORK

posted Thursday, 2 March 2006

March 1 was officially my first day back at ZS Associates. Of course, I had a client meeting scheduled and didn't actually make it into the office, but technically, I was "at work". Many people commented that it was crazy to have a meeting on my first day back, but it was actually kind of nice. I didn't have to prepare the meeting materials or give the presentation -- I just sat there and listened. It was a nice welcome back too, as I was returning to work with one of the clients that I had been working with before I left. The folks at the meeting were all people who I had known and worked with and who were actively supporting me in my absense. It was nice to see everyone - I got hugs and "welcome backs" and it really felt great!

March 2, I returned to the office to find a lovely bouquet of flowers and a Whole Foods gift card from Meryl, the office manager, and a Welcome Back sign on my office door from Vanita. Folks stopped in throughout the day, making it fairly unproductive, but still... really great to be back. Thank you to everyone for making me feel so welcome!

I am planning to take back only one of the two clients that I had before I got sick, representing ~50% of the client work that I was doing a year ago. To fill my time, I will be taking on several internal projects, providing me with more flexibility and less stress, as I transition back into life at ZS.