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BRCA1/2

Going Public

Those who are close to me know that I've been dealing with a health issue for the past few weeks, and until now I wasn't ready to talk about it here; I was just too mentally, emotionally, and physically drained to talk about it at all, nevermind throwing it out on the Internet for all the world to see.

But now - perhaps selfishly - I think it's time. You see, I've had an overwhelming outpouring of support, concern, and questions from all sorts of people (family, friends, coworkers, medical professionals, hair stylists...even complete strangers!), and while I'm so grateful for the concern, I'm finding it difficult to keep up with the correspondence. I think periodic blog updates on my progress will be a great way for people who care to easily check in and see how I'm doing (but feel free to still call/email/text!).

So here goes:

On January 27, 2012, I went into MGH at 9am for my annual mammogram.  The doctor looked at the images while I was there because I had been complaining about a cyst that was diagnosed a year prior, and she ordered an immediate ultrasound. So we went down the hall where I lied on a bed with 4 residents observing the situation, and the doctor pointed to the image on screen and said, "this has me really worried." From there it was kind of a blur, but what followed was a biopsy to remove a tissue sample and place a marker at the suspicious site, a second mammogram to ensure the marker was in place, and a second biopsy to retrieve additional tissue. I went home at 3pm with a diagnosis: ductal carcinoma. Breast Cancer.

At this point I didn't know much. They had to do tons of tests to understand what stage it was and how to proceed. So I went in at 7am the next day and had a breast MRI. And I spent the whole day there the following Thursday, Feb 2nd, having a bone scan and three CT scans (chest, abdomen, pelvis). That day I went home with a card indicating I was radioactive, thanks to the injections. Would come in handy if I'd gone to the airport and set off the bomb detectors (!). I wish I could've taken photos of all the crazy machines I was in, but no cell phones allowed :) But they weren't enjoyable experiences...I have an irrational fear of needles and blood so all the IVs and infusions put me on edge, but I made it through. And the next day I got the more formal diagnosis: stage 2 breast cancer that would likely require chemotherapy.

I then postponed things for a week while I went on a much-needed vacation to celebrate my 40th birthday (Thanks, John).

And then back to reality: I had a sentinel lymph node biopsy on Monday, February 13th, to see if the cancer had spread. They removed 5 lymph nodes and found cancer in 4 of them. Bummer.

So here's where we're at:

  • I have a 4.6cm cancerous tumor in my left breast (which is large, apparently; too large to just remove), but nothing in the right (thank God)
  • It is stage two three due to its size and the fact that it's spread, but it's grade 1 (meaning it's slow growth, which I find bizarre since there was no evidence of it in last year's mammo)
  • My treatment regimen is 8 chemotherapy infusions over the course of 16 weeks (so, every other Friday). The first 4 are a cocktail of Adriamycin and Cytoxan. The last four will be a different drug, but I forget what it's called.
  • The goal is for the chemo to shrink the tumor so that it may be surgically removed. I would have surgery 2-3 weeks after the chemo has ended, followed by a course of radiation. I will also need to have the lymph nodes removed at the same time.

So I went for my first round of chemo last week, on Friday, February 17th. It wasn't bad, really - I had a private room and a wonderful nurse who even made the IV in my wrist tolerable. It's a slow process - 3 hours for the infusion - but my parents kept me company and provided tons of support.

Here is the note that I sent out after that session to all the folks who had inquired (I've since added links to my care team):

----- Forwarded Message -----
From: Stephanie
Sent: Saturday, February 18, 2012 9:05 AM
Subject: I made it!

Good morning, Everyone -

Thank you for all the well wishes, thoughts, and prayers...they worked! Made it through my first (very long) day at MGH pretty well. I am in the care of an amazing team over there: a nationally recognized breast surgeon who is supremely upbeat and one of the most down-to-earth people I've met; a crazy-smart oncologist who is on the bleeding edge of medicine and involved in all sorts of clinical trials (I'm considering one), and a wonderful infusion nurse who made the hardest part for me (the 3 hour IV) quite doable. I also got two calls from my primary care physician back at MGH Downtown, "just to see how you're doing," and a call and visit from a social worker offering up support groups, massage therapy, acupuncture, whatever. So...I'm really seeing this whole Accountable Care Organization come to life!

Will respond to you all individually at some point, but in the interim, here's what happened:

My wonderful parents fought the commuter traffic into Boston to get me there bright and early and provide some much-needed moral support.

From 9-10 I had an echocardiogram. Have you ever had this done? It's wild...they took 120 pictures of my heart from all different angles which I could see & hear on a monitor, up close and pumping in real time. Creepy but cool. They do this to establish a baseline so the can then monitor any impact the chemo is having on blood flow. The machine highlights direction and volume of blood flow via bright red and blue color overlays, making it look like a rather beautiful piece of abstract art. I'm hoping for a color print out so that I can add it to Pinterest ;)

I then met with my surgeon & oncologist who informed me that the cancer has in fact spread to my lymph nodes, which means my original 4 treatments over 8 weeks will now be 8 treatments over 16 weeks, followed by a couple of surgeries. Not great, but totally doable. And it was all the info I needed to decide to go ahead and buy the oh-so-expensive-Newbury-St-wig I eyed earlier this week ;)

Last part of the day was the lengthy chemo infusion, which I had done via an IV in my wrist. Getting the needles placed was really the hardest part for me (I am notoriously squeamish with these things) but once that was done we just had to sit there and let it do it's thing. I opted for a private room for this first time, and my folks were able to stay with me the whole time. We ate sandwiches, read books, watched tv, and chatted until about 5pm when it was all done and we could go home. I felt pretty good! Tired from all the excitement, but not ill.

And so far today, so good.

Talk soon,

Stephanie

The past week hasn't been quite as rosy as that email was. Later that day I got an injection of Neulasta in my stomach (thanks, Mom) to ward off infection, and sort of went down hill from there. I am definitely feeling the side effects of the chemo (nausea and insomnia among others) and while none of them on their own are debilitating, the cumulative effects can be draining. But it's really day-by-day. Today I actually felt fantastic - met friends for coffee this morning and another for lunch this afternoon. It was the first time all week I ate anything besides gingerale, toast with peanut butter, oatmeal with raisins, yogurt or chicken soup! Progress :)

And now you're all up to speed.

IMAG0592Getting my first chemotherapy infusion.

Comments

Jayne Hall

Hi Stephanie,
We are thinking of you and sending lots of hugs..

Love , Jayne

Jennifer Sloan

Hi Stephanie,

I've just finished reading some of your posts so am up to speed somewhat. My goodness...all I can say is what a trooper you are and how many good thoughts I am thinking and praying for you. And how do you look so beautiful sitting there with a chemotherapy infusion?! :-) Miss you and love you and hope that you are hanging in there and doing well. Would love to visit with you once you are feeling better and up to it.

Jayne

Hi Stephanie, I am Karens sister, My Name is Jayne and I am Pauls sisiter in law. They gave me the blog so I could see how you are doing we talk about you and everything you are going thru. you are amazing and we are thinking and praying for you each and every step of the way.Thank you for the blog you write,that keeps the family updated. Sending get well wishes and Hugs to you and your family.
Jayne

Jim bandera

Hello Stephanie -

I am thinking of you!

Jim

Stephanie

Thank you, Jeremy! So great to hear from you. My love to you, Ethan & the girls, too :)

Jeremy Kusmin

Hi steph,
I cannot stop thinking of you and what you are going through. I am praying for you and know you will not only get through this, but will do so with flying colors (and maybe even publishing a great book along the way....you are an amazing writer)! sending you tons of hugs, love and support.
jeremy

Stephanie

Thank you, C.C. - I really appreciate it.

Stephanie

C.C. Chapman

VERY sorry to hear this news. It feels like I know so many people going through this right now.

I have ever bit of faith that you'll fight your way through this.

My thoughts and prayers are with you and your family. BIG hugs!

Stephanie

Thank you so much, Jean. I will send you an email offline...

Jean Burke

Steph, Ryan and Kate have kept us updated on your news. I just want you to know how much we are thinking and praying for you. You seem to have a great attitude, but I'm sure you have your downtimes and fears. Please come to the Cape any time for a visit if you would like to get out of the city and spend some time alone. You could even have the nice guest room and not have to sleep on the floor or a sofa!(which I'm sure you have done in the past). We're thinking of you and hope that you don't mind that Ryan sent us this blog. Love, Jean

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