Tuesday, October 29, 2013

Emily's Legacy

As we begin the extremely difficult task of adjusting to our lives without Emily there have been many things that have helped to continue her legacy.  Emily would have been thrilled to know that so many people have donated in her memory to the Helen Sawaya Fund and the Pink Daisy Project.  Both of these charities were very important to Emily and she benefited from them during her fight with breast cancer.

Emily's friends have found some other ways to raise money in her memory.  The Measure Lounge at the Langham 5th Avenue in New York City has a "Cheers to Emily" drink on their menu this month with a dollar of each drink purchased will be donated to the Pink Daisy Project.  Last weekend my parents and I joined several of her friends to say "Cheers to Emily" and enjoy her special cocktail.  It was a very nice evening to celebrate Emily and she would have loved it.  There were some tears, lots of laughter, and many "Emily stories" being shared.  The drink is delicious and we are happy to hear that it is very popular!
Even more money has been raised for the Pink Daisy Project in Emily's memory.  A teacher friend's school raised over $400 last week during their Breast Cancer Awareness Day.  Also one of Emily's friends has a daughter who is having her third birthday party soon.  In lieu of presents, they have asked guests to instead make a donation to the Pink Daisy Project.

Shortly after Emily passed away an article was published telling her story and discussing the financial burden of being diagnosed with a chronic illness on Learnvest.com.  This article was actually picked up by several online publications including Forbes.com and Huffingtonpost.com.  It is comforting to know that many people have read her story, been inspired by her strength, and also have a better understanding of what is possibly involved when life gives such unexpected news.

I also love hearing stories how friends continue to carry Emily's memory with them.  An avid runner who participates in several races a year had a shoe charm made with the letter E and runs in honor of Emily for all of her races.  Another friend always carries a copy of The Great Gatsby (Emily's favorite book) with a couple of pictures of Emily inside as she travels through New York City.  I knew I too wanted to have a tribute in some way and I decided to have the letter E tattooed on my left wrist.  Emily knew I had the idea to do it and actually got to see it before she passed away.  I told her that would be my way to take her with me from now on and promised her I would still do things that we had planned to do.  I had the tattoo artist trace her initial off her signature from my son's first birthday card and now I love to see her handwriting permanently on my wrist.  My mother decided she liked it so much she wanted one too!  So now we have matching Es!
We know that nothing will ever replace Emily in our lives but we will continue to carry on her memory and look forward to doing more things to carry on her legacy.

Monday, October 14, 2013

Emily's Life in Pictures

Here is a slideshow that we have compiled of Emily's travels, friends, and family. Thank you to everyone who submitted pictures to help us create this wonderful way to relive our great memories of Emily.

Thursday, October 3, 2013

Celebrating Emily's Life - Part 3

Katie's Eulogy for Emily:
Hello, my name is Katie, for those of you that don’t know me. It’s wonderful to see so many people gathered today to celebrate Emily’s life, show her how much we love her and to support and hold up the Easter and Kirner families. I have to comment on this weather, 85 degrees and sunny! No one loved summer as much as Emily Easter. It’s very fitting to have it be a summerlike day. I think Emily delivered this to us.
I met Emily in the summer of 2000, we started our PR careers together sitting in cubicles next to each other. I actually sat behind her and could see her curly, brown hair in front of me. I always wanted curly hair I’d tell her, and she’d always tell me about who her hair was straight until high school when it turned curly. I think she was trying to give me hope that my hair too could turn curly one day. Well, I’m still waiting for my curly hair, Em.
We quickly became friends along with Louise who started at this job the same week I did. The three of us spent a lot of time together running around New York City as well as the Jersey Shore, Atlantic City and Las Vegas, laughing, dancing, going out for cocktails, going to concerts, dinners and more. We were each other’s sounding boards for all things related to work and the world of New York City PR. In a way we grew up together, going from early 20 somethings trying to figure out if we had made the right career choice, to becoming well established in our careers into our 30s. While our friendship began out of work and our hours and hours of endless conversation and laughter often focused on that, our relationship blossomed into so much more.
Emily was one of the first people I called to talk about this cute Australian boy I met at a bar. Soon after I met this boy, Em and I spent a summer beach weekend together on the North Fork. Unfortunately for Emily, it rained the whole time so she had no choice but to listen to me talk and obsess about this boy I met. But she did so with such enthusiasm and interest. Years later we’d joke about that weekend and I’d apologize for boring her but she always said she didn’t mind as that’s the kind of friend she was. Emily was one of the first people I called when I got engaged to that boy I obsessed about on our rainy weekend away together. She was one of the first people I told when I found out I was pregnant. She was one of the first people I’d call or meet up with when I had high’s or low’s relating to work and I just needed to talk. She was at most of my birthday gatherings, unless of course that was her vacation week at the Shore. Having a late July birthday, it often fell over her vacation week. She’d called me up to wish me a happy birthday and offer to come into the city for the night to go out but I wouldn’t let her. I never minded if she skipped my birthday for the Shore as it meant so much to her to be there with her family. She would have though had I said yes as that’s the kind of friend she was. She was at my bridal shower, led a conga line with Louise at my bachelorette party, was at my wedding, my baby shower. She came to see me at home in the final weeks of my pregnancy when I could barely move. She came to the hospital when my daughter, Fiona, was born. She was one of the first people to meet and lovingly hold her. She knit my daughter a hat when she was a baby and gave her the book, ‘Guess How Much I Love You’. She often came out to my house to see my daughter and play with her. Fiona can be shy and doesn’t often take to people she doesn’t see regularly but no matter how much time passed since she last saw Emily, she always warmed to her immediately. I told Emily, the last time she saw Fiona which was this summer when she came over, you’re the Fiona Whisperer.
In other words, Emily was one of the greatest cheerleaders of my life. Always there to support, encourage, smile and be happy for me. Even when much of these milestones I just touched on happened over the last 3 ½ years while she was battling the disease. She never wavered, she never faltered in her friendship. She never, ever let her situation stand in the way of being an incredible friend to me and to all of you here today. I know she was a great cheerleader to all of you here today.
As I know we all have, I've spent a lot of time in recent days and weeks thinking about Emily.  When I think of her, the following words come to mind...happiness, giving, loving, gracious, gentle, the world's best laugh, sharp wit, heart of gold, great taste in music, wonderful writer, excellent proof reader, smart, the best sounding board on any topic, great listener, fun, and... hopeful, despite everything she faced these last few years, she was always full of hope.  Two other words that come to mind are, great smile.  Here is a quote from one of her favorite authors, F. Scott Fitzgerald, "It was only a sunny smile, and little it cost in the giving, but like morning light it scattered the night and made the day worth living."  Em's smile was always sunny and made all our days worth living.
The most important trait though about Em, is that…she is the kindest person I know. You knew when you called Em or saw her, she’d be happy, cheery and kind – no matter how dark a day she may have been having. I have learned a lot from Emily in our nearly 15-year friendship and have learned a lot from her through the incredible way in which she handled her disease. But I think the thing I want to make sure I carry most as a learning experience and a way to honor Emily, is to always be kind, as she was to all of us. There’s the expression, be kinder than you feel. I have often thought of that expression…I don’t know why but it’s something that has stuck with me years. But I’m no longer going to think, be kinder than you feel. Rather, I’m going to think, be kind, like Emily. She gave me so many gifts in life and even though my heart will never fully be the same without her, I will take the lesson of, be kind, like Emily, as a learning and a gift from her.
So in closing, thank you, to everyone here for being here at this moment, thank you for loving Emily. Thank you to Mr. & Mrs. Easter for giving the world the gift of your incredible daughter. Let’s all remember the Easter and Kirner families as well as Emily’s extended family of aunts, uncles, cousins and her grandfather - in our thoughts and prayers for many, many years to come. We need to be there for them to not only lift them up but to also keep Emily’s memory, spirit and legacy alive.
And Emily, I say to you, we love you, we miss you, we are sad to not have you here with us but we all find peace in knowing you’re in a better place and with your grandparents. We will all see you again one day. Save me a beach chair and a cocktail please.  
And to quote the final page of the book you gave my daughter, 'Guess How Much I Love You', "Then he lay down close by and whispered with a smile, 'I love you right up to the moon - and back'."  We all love you to the moon and back, Em.

Celebrating Emily's Life - Part 2

Sara's Eulogy for Emily:

We are here today to celebrate an amazing life.  I really believe that a person is never truly gone as long as they are loved and remembered by those of us left behind.  The outpouring of support and love for Emily has been so comforting and has been present from the moment she began her journey.  In fact she often had a waiting list of friends that wanted to accompany her to her various treatments and appointments.  I want you to all know that Emily was a person that truly loved and admired her friends and she was so lucky to have all of you in her life.   Growing up and even her in adult life Emily never liked change or missing out on things.  She loved to laugh and also treasured little traditions.  I insist that you all continue to take Emily with you from now on.  Share your memories about her, tell funny Em stories and continue to do the little traditions that she was a part of with you.  I know for myself this is going to be so hard, but I know that it will make her happy that we will do them.
Emily absolutely loved and adored her niece and nephew, Claire and Benjamin.  She made every effort to visit with them as often as she could.   We also video chatted with them and she insisted that I text her little pictures and videos of their everyday life.  We discussed what a tragedy it is that she will not be here as they grow up but she really feels that she will be somehow be able to see them, and this is a comfort for me.  I know I will talk about her often and they will always know how much she loved them.
I’m sure you have heard the quote, “Life isn’t about waiting for the storm to pass, it’s about learning how to dance in the rain.”  That describes Emily exactly.  We have all talked about how extraordinary Emily was through her courageous fight.  She shared her experiences and thoughts in such a personal and touching way that reached beyond her friends and family.  In fact her blog has over 39,000 page views.   Being faced with cancer did not change Emily; she had all of that thoughtful, optimistic, and genuine care for others long before she was faced with such an uncertain future.  Emily and I spent so many times just laughing about silly things that probably only the two of us found funny.  She never wasted a precious moment asking why this was happening.  She just dealt with her situation with grace and dignity.    So many times it was easy to forget she was battling such a disease because she kept a positive attitude and normal life.  If her strength and courage, and our love for her were enough, she would have lived to a 100. 

Rest in peace, Emily.  I love you.

Celebrating Emily's Life - Part 1

We have been very touched and comforted by the outpouring of sympathy for the loss of our Emily.  Her funeral services were yesterday and we wanted to post the eulogies for those that were unable to attend.

Dad’s Eulogy for Emily
October 2, 2013

A few years ago Jan and I attended a concert where Elton John sang “life is wonderful with you in the world” and Billy Joel sang “The Good Die Young”.  They both could have been singing about Emily.

Emily was a joy every day of her life and yes, she died way too young.  Vigorous people who lead healthy lifestyles and who make good decisions are not supposed to die at 35.  It is just not fair.

But that is what has happened.

Our hearts are absolutely broken over our loss.

At a time of great loss it helps to focus on what we still have.

One thing that we have is the knowledge that Emily’s life was a life well lived.  She excelled academically and graduated from Villanova University with honors.  She had a career in Public Relations that she absolutely loved.  Over the years she steadily advanced to positions with greater responsibility – she even was promoted earlier this year.
Emily was able to travel extensively.  She went to Europe 11 times, had multiple trips to Tahiti & Bora Bora, visited Hawaii, several places in the Caribbean and just about any nice place you can think of the the Continental United States.
She had many talents but her special talent was writing.  I just love reading things she wrote.  She will never be able to produce that novel that she had in her head.
It was always important to Emily to do things correctly.  She would think and think on virtually everything she did until it was just right whether it be a client presentation or selecting the perfect greeting card.
Emily developed great and lasting friendships at every stage of her life from grade school on.  She had wonderful friends and she was a good friend.

Another thing that we have is happy memories.  We are a close knit family and truly enjoyed countless times together whether it be a trip, a walk on the beach or watching a game together.  Emily had a wide range of interests including literature, her music, knitting, sports and spending quality time with her family and friends.  Emily battled cancer for 3 ½ years – 10% of her life.  The day we met Dr. Sara he told her that she was Emily; not Emily the cancer patient.  He said to continue to make happy memories and we did just that including many great times at the shore this season.  We would not have had  3 ½ years worth of additional happy memories without the tremendous care and effort of Dr. Sara and the amazing team at St. Luke’s/Roosevelt Hospital.  Dr. Sara is with us this morning – thank you Dr. Sara.

One other thing that we will have is Emily’s legacy.  She fought her battle with the monster that is breast cancer with courage, strength, dignity and class.  She never once said “poor me”.  Through her blog and other communications during this battle many people got to see what we knew all along – the wonderful person that was Emily.  Many people have remarked that her attitude, candor and humor during this battle were inspirational – what a fine compliment for our sweet Emily.

Ladies and Gentlemen, as we say good bye to Emily today I want to thank each and every one of you for the part you played in enriching the life of Emily Christine Easter.  Good bye sweetheart.

Saturday, September 28, 2013

Rest in Peace Emily

It is with great sadness to announce that our Emily passed away yesterday September 27, 2013 at 1:25pm.  Her passing was peaceful, and she was at our family home surrounded by family and friends.
The past couple of days her condition rapidly declined and by Friday morning she was unable to walk and could barely speak.  She did not seem to be in pain, although we administered her medication to make sure she was comfortable.   Her last morning was a beautiful sunny day and she had an amazing visit with some friends.  There was lots of love and laughter surrounding her final hours. Even though Emily was extremely weak and mostly uncommunicative we know she was able to hear us.  She was also able to see her beloved niece and nephew.
As we could tell her condition was dire, we contacted our local parish and the priest came to our home to give Emily her last rites.  When her time came it was very peaceful and she was with the ones she loved.
Even though we know this was going to occur we are still shocked at the speed of how fast everything happened.  In true Emily fashion, we can look at the bright side of this and know that for almost all of her 3 ½ years since she was diagnosed she led a very happy, healthy, and as normal life as possible.  In fact, it was often easy to forget at times she was battling this horrific disease as she did with such strength, courage, and dignity.  We feel peace and comfort knowing that Emily is now free of pain and sickness and has gone on to a much better place.
Thank you, Emily’s Entourage, for your amazing support, prayers, and love.

Her obituary and arrangements will be posted here later today:  http://saulfuneralhomes.com/

Wednesday, September 25, 2013

Emily's Extraordinary Entourage

Emily is blessed to have so many people who care about her and who have offered supportive messages during this most difficult time.  With Emily’s current condition she cannot respond to the many email, text, voice mail and blog messages she has received.  She sleeps most of the time and is extremely weak.  For example, she cannot get out of a chair or go up or down stairs by herself anymore and she now has oxygen to help her breathe.  Please understand that Emily treasures each message and definitely feels and appreciates the love and support you are all providing.

For those of you who have scheduled visits, we believe you should come as planned but please understand that Emily is less responsive than any of us would like to see.  In typical Emily fashion she has “risen to the occasion” on most visits and has enjoyed them very much.

Also, so many of you have sincerely asked what you can do.  Unfortunately the only thing that most can do for Emily is to pray for her.  Our whole family is comforted by and appreciates the support and prayers that are being offered.  We will continue to provide updates.

Friday, September 20, 2013

Emily's Entourage

Hello, this is Sara, Emily’s sister.  I wanted to write a post to give an update on Emily.  On September 5th Emily and our parents went to their weekly appointment with Dr. Sara.  After an examination Dr. Sara determined that her liver has in fact grown due to the spread of the disease and determined that continuing treatment will not provide any further benefit.  At this stage the focus changes to managing Emily’s symptoms and keeping her as comfortable as possible.  Although we have known that this was coming, it is still extremely difficult to accept.
The following week Dr. Sara advised that we engage hospice care; in fact his staff had already made initial contact for Emily.  The hospice focus is to provide resources and support through progressive illness.  Emily has been assigned a social worker, a spiritual advisor, and a nurse that visits our home, as Emily is now staying with our parents full time.  She has been provided various medications to help manage her symptoms and the hospice care can also provide other items, such as a hospital bed, should that become necessary.
As for Emily’s current condition she has good days and bad days.  Emily has become very weak and sleeps about 14 hours a day, including naps.  She has persistent nausea which is very unpleasant.  From time to time she experiences abdominal pain.  Emily continues to still maintain good spirits despite her situation and we enjoy flashes of her good humor.
From the day of Emily’s diagnosis almost four years ago she has benefited from the tremendous support and love of her family, friends, and acquaintances.  It has been gratifying to see all of the calls, messages, and visits from her many friends.  Some days she has had great visits with friends accompanied by sharing memories and laughter and other days she has regretfully had to cancel or postpone planned visits.  This has shown that Emily’s Entourage is more than just a name. I have attached a picture of Emily with her friends Katie and Louise enjoying the park last Sunday.
Emily has been touched by the outreach from everybody near and far and truly appreciates every single one, even if she is unable to respond to them all.

Thank you for your support and prayers.  I will update again soon.

Wednesday, September 4, 2013

I Always Knew This Day Would Come

Test result days are nerve-wracking, to say the least.  But, if you've been following this blog, you know that I tend to not worry about things until I have to, i.e. I try not to dwell too much on what COULD happen, and instead deal with it when it DOES happen. This time felt different, though. I had a bad feeling about these results, and unfortunately, I was right.

Let's back up though, and pick up where we left off back in May. Things were looking up after the start of the TDM1, as my tumor markers were down.  My next treatment was scheduled for May 30th, and a few days before, I had gone to the hospital to get blood drawn, since one of the side effects of this new drug is that it can make your liver enzymes spike (and if that happens, you need to delay treatment until they go back down), thereby requiring the test before I could be treated.

On May 29th - my 35th birthday - Eugenie (Dr. Sara's nurse practitioner) called to tell me that my liver enzymes had indeed spiked. But, since it's a known side effect of the TDM1, it initially wasn't that concerning. I would just redo the blood test the following week, and assuming they had gone down, I'd get treated then.

So the following Tuesday I had my blood drawn again. Later that day, Dr. Sara called me directly. He told me that instead of going down, my liver enzymes had increased even more. While it could still be the drug's side effects (since it's such a new drug and I was the first person at Roosevelt to get it, it's patterns are obviously still a little unfamiliar), he said it could also mean increased tumors in the liver.

So, I needed to have a PET/CT scan right away. I went on Thursday for the test, dutifully following the very restrictive diet (which I hate) the day before.

And as I said, this time I just had a bad feeling.  I don't know why... maybe my body was telling me something my head didn't know yet, but I was dreading my 12:30pm appointment with Dr. Sara the following day.

That day - Friday, June 7th - I went to work as usual, and left around noon to meet my parents in the lobby of the hospital for my appointment.  On the one hand, I wanted to know the results - since as I've said before, the not knowing is the worst part.  But on the other hand, I didn't want to know.

Dr. Sara started off by asking me how I was feeling. I told him I'd been feeling a little more fatigued than usual lately, and he nodded, then got into my test results.  He said as he had feared, the PET confirmed that there were indeed increased tumors in my liver - so many, they cannot even be counted anymore.  However, my liver is still functioning at 100% (very resilient organ, the liver).

But what he did not expect to find, and what was most concerning, is that the cancer has now spread to my brain. The PET showed at least two tumors - one near the front, and the other in the cerebellum, in the back of the skull.  This one could be serious because unlike other areas of the brain, the cerebellum is a small area, so there is not much room for it to grow - meaning when it does grow, it's more likely to cause symptoms sooner.  It's actually swelling around the tumors (called edema) that causes symptoms. Dr. Sara asked me if I've been having any vision problems, balance issues, or headaches (which I haven't, luckily). He said the fatigue I'd been feeling lately was likely due to the progression of the cancer.

Dr. Sara said the PET/CT scan is actually not a great test for brain metastases, and that I needed to have a brain MRI which will show a much clearer picture. He said that he fully expected the brain MRI to show more tumors than the two that the PET scan showed.

Dr. Sara said that my disease has taken a very serious turn - in short, I likely do not have much time left. I asked him if I should leave my job, and he nodded. This is the point when I started to cry, because this is when it hit me that this was really it.  

He said that I need to think about how I want to spend the time I have left, and spend it accordingly.  I asked him how long we were talking about here - weeks, months? - and he said his best guess is that I had 3-6 months, though it could be sooner, and of course he said "we hope I am wrong".

Like I say in the title of this blog post, I always knew this day would come, but I always held out hope and believed it could be 20 years or more from now.  And I still believe that is possible.  I am realistic about my prognosis, and I am making plans accordingly, but I believe in miracles, and I have not given up.

But despite all that, this was obviously devastating news to hear.  My parents were with me, and we hugged and cried.  Even Eugenie had tears in her eyes.

However, no one is giving up.  Dr. Sara said that brain metastases are typically treated one of two ways - either through surgery or radiation.  The body's natural blood-brain barrier, which prevents routine infections in the body from spreading to the brain, also prevents most chemo drugs from getting to the brain as well.

He suspected that I would most likely need radiation, because he expected the MRI to show more tumors than could reasonably be treated with surgery, but we would wait to see what the MRI showed first.

In the meantime, I would start a new chemo regimen. I would go on a drug I hadn't been on before - Irinotecan - in addition to going back on Avastin. Dr. Sara said some studies show that Avastin may actually be able to cross the blood-brain barrier, and effectively treat brain tumors. And, I would start right away.

So, after finding out this terrible, terrible news, I really just wanted to go home and try to process everything I'd just learned, but I had to stay and get my new treatment.

One other thing - I would immediately start taking the steroid Decadron three times a day to help minimize any swelling in the brain. I have been on Decadron in the past, and some of the side effects are that it can give you energy, interrupt your sleep, make you crave carbs, give you acid reflux, and give you thrush (infection in the throat). So I wasn't thrilled to find out I was going back on this drug, but of course I'll do anything that will keep the brain tumors at bay.

Luckily, my favorite nurse Jeanna, was my nurse that day. Well, truth be told I'm not sure how much luck was involved. I think she and/or Eugenie contrived to have her get my chart. She had been told what happened and gave me a good long hug, and put me in a room with no other patients. And when she asked if she could get us anything and my Dad joked "a gin and tonic?" she asked me if I would like an Ativan (a tranquilizer).  Having had Ativan before to relax me before my long spine radiation treatments, I said yes, and it did help to calm me down for treatment.

We got through the day and the following week I had my brain MRI, which as expected showed 7 - possibly 8 - tumors.  Luckily, it did not show much swelling.  The clear form of treatment was radiation, and later that week I had an appointment with my radiation oncologist Dr. Evans, and I started brain radiation the following Monday.

Brain radiation is a lot like breast radiation, although less treatments.  I went for 15 days (not counting weekends or holidays), and I would lay back on the machine.  They put a mask on me which had been molded to my face on the first day, in order to keep my head from moving.  Then, the techs would leave the room while the treatment was administered; this only took about 2 minutes and all I could see (through closed eyes) was flashes of blue light on either side of my head.

Side effects were minimal - as with all kinds of radiation, there is increased fatigue as the treatment goes on, and it makes your hair fall out.  And my hair may or may not come back - even though it's been two months now since I finished radiation, Dr. Evans says its still too soon to tell, as the chemo also causes hair loss. With radiation, the hair also comes out in weird patterns - we buzzed it off, but I now have a patch right at the back of my neck that has grown back; nowhere else.  Weird.

During this time I also took a permanent medical leave from my job.  This was hard, since I really love my job and all the people I work with.  But we have been staying in touch and I've had the chance to visit a couple time so that is great!

Throughout the summer I have been enjoying my time with family at the Jersey Shore and visits with my friends in both NYC and NJ.  I split my time between my home in Hoboken and my parent's house, although lately I've been spending more time at my parents' house.  I visited my sister in Maryland to celebrate my nephew's 1st birthday - here is a picture of my sister Sara, Ben, and me:

We also went to the Dave Matthews Band concert in NJ and the Justin Timberlake and Jay Z concert in Baltimore.  We had a wonderful time at the wedding of a close friend down the shore where we all spent 10 straight days in July.

The past few weeks I have had increased fatigue (I now sleep about 12-14 hours a day) as well as nausea, and this has unfortunately caused me to have to slow down my social outings, which makes me sad.

I had a cold a couple weeks ago and developed a lingering cough, so Dr. Sara ordered a chest x-ray and also a brain MRI (because he was a little concerned the nausea might be caused by swelling of the brain tumors).  Last week we found out that my chest x-ray was clear and my brain MRI showed no new lesions. And the existing lesions have either shrunk or disappeared.  While this is all positive news, my appetite is still only about 50% of what it normally is, and I am still experiencing quite a bit of stomach distress.  Dr. Sara is not certain what exactly is causing this and they've started me on more anti-nausea medications.  I am still going for chemo every week (well, three weeks on, one week off), so he is monitoring me closely.

I know this is packing a lot of news into one post but I appreciate everyone's concern!

***Note - the above post is a combination of efforts. I started it, but my sister Sara helped complete it. As you can imagine the last three months have been difficult, and it's been hard for me than I expected to sit down and put it all on paper (especially now that I'm not feeling 100%). Moving forward, I will try to post when I can, but Sara has graciously offered to post in my stead, in order to keep everyone updated more frequently.

Sunday, May 12, 2013

Tumor Markers Going Down, Down, Down

I have had three treatments of the TDM1 now, and this week was our first indication of whether it's doing its job or not.  And I am happy to report that it is!

My tumor markers were taken this week, just a few days before my third treatment.  I now have to go to the hospital a few days before treatment to get my blood drawn, since they need to make sure my liver enzyme levels are good, and that's not something that can be measured with a simple finger-stick before treatment.

So when I came for treatment on Friday, Eugenie (Dr. Sara's nurse practitioner) came by my chair and told us the good news that my tumor markers are down!  And it was clear that she and Dr. Sara were just as excited to hear my results as I was.  She said Dr. Sara had emailed her earlier saying "LOOK AT EMILY'S TUMOR MARKERS!" (complete with all capital letters).  It feels good to know how much Dr. Sara and Eugenie care.

I'm still going pretty strong on the minimal side effects - as I mentioned, after the first treatment I had some achy-ness.  I had that again after the second treatment, but it was less intense (not that it was even that bad the first time) and for a shorter duration.  So far this time, I had a little soreness in my lower back the day after treatment, but frankly, I think that was bothering me before so I'm not even sure it's related to treatment at all.  I feel fine today, two days post-treatment, and even went running this morning.

And, my hair is definitely coming back in!  On April 13th, I had what I like to call my "troll hair" - meaning the wispy, brittle, uneven "chemo hair" I had - shaved off.  I did this to get rid of the crappy chemo hair and make way for the new healthy hair to come in.  I did the same thing last time I knew my hair would be coming back, and it worked out well.

My new hair feels like it's coming in fast - in reality, it's probably the standard 1/4" per month rate that hair normally grows, but it always feels faster when it's this short since it's that much more noticeable.  Last weekend my Dad even swore that I had more hair on Sunday than I did on Friday!

I'm still wearing the wigs most of the time, since it's still a little too short for comfort.  My goal is to have it long enough that you can't see any scalp (which I'm pretty much there now), and long enough that it's not sticking straight up, but that I can have it lay flat on top (even if it takes some product to get there).  I still have a bit of a ways to go to get there.  I'm hoping maybe by Memorial Day it will be long enough that I can ditch the wigs.  It would be coming full circle, since it was Memorial Day last year that I had just started losing it again, and shaved it off since it was getting really annoying.

It will be nice to have short hair for the summer.  And, there was a segment on Good Morning America just this week about how pixie haircuts are "in," so I will be right on trend!

Sunday, April 7, 2013

Bone Biopsy Results, Part Two

When last we left off, I had received the results of my bone biopsy, but my next treatment was still TBD.  The uncertainty was difficult, but as Dr. Sara promised (and he's never broken a promise to me yet), by the time of my next treatment, he had a game plan in place.

He had consulted with his colleagues at Sloan Kettering, and they agreed that the new drug TDM-1 was the best option for me.  I would also be taken off all the other chemo I had been on previously, so I will only be receiving the TDM-1.

This drug had JUST hit the market and in fact was so new that I couldn't get treated that day since insurance hadn't approved it yet.  Eugenie, Dr. Sara's nurse practitioner, who was working on getting all the approvals, said they practically had to get the White House to approve it!  I would be the first person receiving TDM-1 at Roosevelt Hospital.

To give insurance time for all the approvals, I rescheduled treatment for the following week.  Although I was supposed to go in the morning as usual, the day before treatment Eugenie called me to tell me to come in the afternoon since the drug wouldn't be arriving at the hospital until noon.  I imagined the drug arriving like the Stanley Cup, complete with a white-gloved escort!

Even when I arrived at the hospital around 1pm, the drug "was in the building" but hadn't yet arrived at the oncology pharmacy.  But luckily, I didn't have to wait too long.

Since this was obviously my first time getting this drug, it was administered slowly over a 90-minute infusion.  Future treatments will be faster.  Of course, as is the case with any new drug, there was a risk of a reaction (like what happened when I got the Pertuzamab the first time), but luckily I was reaction-free this time.

Like the Herceptin and the Pertuzamab, this drug has minimal side effects.  I will have to keep getting MUGA scans to monitor my heart, but luckily every MUGA scan I've ever had has been normal (including one just a few days before my first TDM-1 treatment).  I did notice some achy-ness in the days following treatment.  It could have been a side effect, but it's hard to know for sure.  I guess I have to wait and see if it happens again.  Either way, it wasn't too bad, and is definitely something I can live with.

The best news of all is that I WILL BE GETTING MY HAIR BACK!!!  This drug does not cause hair loss, so almost a year since I started losing it again, I'll be getting it back.  It will be nice to have real hair again and not have to rely on wigs all the time - I am really looking forward to that!

One other new development that I think I forgot to mention last time - I am also starting to receive a drug called Xgeva, which is given to help my bones build back up from the tumors.  It's not a chemo - in fact it's more typically given to osteoporosis patients - and it doesn't really have any side efffects either.  I will get this shot once a month, and had the first one when I got my bone biopsy results.  No side effects to report!

So now, I am just hoping and praying that the TDM-1 lives up to its hype and does its job.  Time will tell.  Dr. Sara was also encouraged by some additional news he got from his colleagues at Sloan - they told him they are working on the "next generation" of the TDM-1 drug, and so it is good to know that that is also a possibility down the road should I need it.

For now, I'm going to send positive vibes to the TDM-1 running through my body, and will be staying on the lookout for healthy new hair to start growing back soon!

Sunday, March 17, 2013

Bone Biopsy and Results, Part One

For the fourth time in my cancer career, I reported to the 5th floor Ambulatory Surgery center of Roosevelt Hospital on the morning of my bone biopsy. This is the same place I had to go when I had my liver biopsy and my two surgeries, so I'm pretty familiar with the place by now.

Luckily, unlike those other times, my appointment was not at the crack of dawn, but rather a much more reasonable 10am.  Although, I learned that the price for getting to sleep in a bit meant that I was that much more hungry, since I was not allowed to eat anything after midnight.  Interestingly enough, when we checked in my Dad was remanded to the hallway to finish his coffee, as they don't allow any food or drink in the waiting room.  The reason for this is to not flaunt food and drink in front of the patients who can't have any!  I thought that was pretty thoughtful and considerate, though it did mean my Dad had to chug his coffee in the hall (I guess we didn't remember everything about Ambulatory Surgery!).

We didn't have to wait long before they called me to the back.  As usual, they asked me a bunch of questions (like why was I there, when was the last time I ate, etc.) and then gave me a hospital gown and locker to store my stuff during my procedure.  Then my Dad was allowed to come back.  Once again, we didn't have to wait too long before they were ready for me.

I was wheeled down to the 4th floor, where the procedure would take place, and a nurse came over to put in an IV.  She tried to put it in my hand, since I would be lying on my stomach for the procedure, which would theoretically make a port IV difficult, but the vein blew (hate when that happens).  So, she left to ask the doctor if a port IV would be OK and luckily he said yes (whew).

Once my IV was all set up, a fellow who works with the doctor came over to explain the procedure.  They would be using CT scans to guide a needle into a tumor in my spine to extract a small piece of it for analysis.  I would be given a sedative to relax me, but not put me out (though she said some people do fall asleep).  I would also be given a local anasthetic.  She also warned me that the needle itself makes a noise - kind of like a dental drill - since it would be going into bone, and not to be alarmed by the sound.

While we waited for me to be wheeled into the procedure room, my Dad and I chatted about - of all things - Easter candy.  You see, I gave up chocolate for Lent, and I really, really miss it.  And considering that it was around noon by this time, meaning I hadn't eaten in about 15 hours, I had candy on the brain.  So we discussed what my parents would be purchasing for Easter candy this year and concluded that it would include all of my favorites, especially peanut butter eggs, but also a chocolate bunny, Cadbury eggs, Peeps, and jellybeans.  (And yes, even though I'm almost 35 years old, my parents still do my Easter basket every year!)

After I got wheeled into the procedure room, Dr. Friedman came over to talk to me as well.  I told him that I remembered Dr. Sara saying that they might have to avoid the area of my spine that had radiation, since sometimes that can affect results.  Dr. Friedman said that shouldn't be a problem, but just to be safe, he called Dr. Sara to discuss it before starting the procedure.  And Dr. Sara agreed that the area they were planning to go in was the best place.  I liked that they listened to my concern, and took the extra step to double check with Dr. Sara before doing anything.

Anyway, I was then given Versed and Fentanyl which relaxed me.  I didn't fall asleep during the procedure, so I did hear the "drill".  But it didn't really bother me.  It didn't hurt at all, except for a burning sensation I felt a couple times as the needle was going in.  I mentioned it but they said this was normal too, so nothing to worry about.

I think the whole procedure took about 30 minutes or so, at which point the doctor said they got a good sample, and I was wheeled back out.  I was still very sleepy, but I started to perk up after the drugs started wearing off.

I was then wheeled back up to the 5th floor, where I could finally eat!  They actually had a hospital tray for me with a full meal, but it wasn't vegetarian and didn't really look very appetizing, so I just had some graham crackers and ginger ale.

I was discharged about an hour later, and then I could finally have a real meal.  We went to a nearby diner where I had blueberry pancakes which tasted SO GOOD!

Over the next couple days, I had a slight soreness in my lower back - like I pulled a muscle - but other than that I had no lasting effects from the procedure.  It was pretty easy, all in all.

The following Monday, my parents and I went to Dr. Sara's office to find out the results.  Now, I did not really feel apprehensive about getting these test results - after all, we already knew that it was cancer of course, and we already knew that it was increasing in the bone; it was just a matter of whether or not the cancer was hormone receptive, which would determine the type of treatment.

Dr. Sara told us that the test results showed that the cancer was actually NOT hormone receptive.  It is HER2 receptor positive, but not hormone receptor positive.  This means that determining treatment is more complicated.  If the cancer was hormone receptive, the answer would have been clear - add a hormone treatment to my current regimen.  But that solution will clearly not work, so what do we do now?

Dr. Sara said that there is no clear answer on how to treat this, so he is consulting with other oncologists to get additional opinions and ideas.  By the time I have my next chemo treatment (this coming Thursday), he will have a plan in place.

You see, there are three known characteristics of breast cancer receptors - HER2 and the two hormones estrogen and progesterone.  But, there are other types of receptors which have not been discovered yet.  And it's one of these receptors that is causing the cancer in my bone to respond differently from the cancer in my liver, which is why it's so difficult to determine treatment.

Dr. Sara said one possibility he is considering is putting me on TDM1, which is the latest "blockbuster" breast cancer drug.  It actually has just been approved by the FDA, and will be on the market within a week or so.  It is a HER2 drug, so it's possible the cancer in the bone might be more receptive to this new drug, since it's not responding to the Herceptin and Pertuzamab.  Dr. Sara is consulting with the team at Memorial Sloan Kettering, as they did the clinical trials for TDM1, so they know it well and can tell Dr. Sara if they think it is a viable option for me.  The team at Sloan actually already knows about my case, since Dr. Sara had tried to get me into one of their clinical trials for this drug awhile back.

Another option might be to just keep me on the same regimen that I am on, and repeat my PET scan in 2 months, versus the usual 4 months.  Dr. Sara said that sometimes, there can be a "delayed response" in certain areas, so it's possible that the cancer in the bone is just being slow and will eventually respond to the drugs I'm currently on.

The bottom line is, we just don't know yet.  And the not knowing has hit me a little harder than I expected it too. As I said, I was not really apprehensive about getting these results, but I came away from it a little upset.  It was difficult to hear that there is no clear answer to my treatment.  And while I have full confidence that Dr. Sara will come up with the best solution and there will certainly be a plan when I go for chemo this week, the not knowing is hard.

It's not that I'm worried that the treatment will be more demanding physically or anything like that.  It's just that the fact that we don't know what is causing this cancer to not respond to the current regimen means that there is a greater chance whatever treatment we do choose may not work.  Despite this fact, I think I will feel a little better when I know what the plan is, so I am looking forward to Thursday, and to knowing more.

Until then...

Sunday, March 3, 2013


Well, this past week was a scan week... I had my latest PET scan on Tuesday, and got the results on Thursday. As has become the "norm," the results were mixed once again.

The good news is that the cancer in my liver is "markedly" improved. Wahoo! The areas in the lymph nodes in my neck are also improved, which Dr. Sara already knew from his clinical exams.

However, there are some cancerous areas in lymph nodes in my chest and abdomen, as well as a few places on my spine, which are increasing.

So what does this mean? Well, we know that the chemo regimen I am currently on (Herceptin, Pertuzamab, Taxotere) is working - at least where the liver is concerned. So, Dr. Sara does not want to completely change my treatment.

However, obviously, something needs to be done about those increasing areas. As you may remember, last time my treatment changed, Dr. Sara's theory was that the increasing cancer in the liver was likely HER-2 positive, meaning drugs that fight the HER-2 protein (like Herceptin and Pertuzamab) would be effective against it.  It seems that Dr. Sara's theory was correct, since the cancer in the liver is responding to this treatment.

Now, his theory is that perhaps the cancer that is not responding to this treatment might be hormone positive, since when I had my first biopsy back when I was diagnosed, my cancer was both HER-2 and estrogen positive.  It's possible that the cancer in my liver is more HER-2 positive and the cancer in the other areas is more hormone positive.

With breast cancer especially, the cells can act differently within the same body, even though it's all still breast cancer. He used the analogy that my Mom, Dad and I are all part of the same family, but we are still different. This "acting differently within the same body" thing is more often seen with breast cancer than with other types of cancer, and obviously makes treatment more complicated.

If Dr. Sara's theory is correct, then adding a hormone treatment to my current regimen should help fight the increasing spots. However, he doesn't want to just go by trial and error - he would rather know for sure what we are a dealing with rather than just throw something to the wall to see if it sticks.

To that end, I am going to have a bone biopsy this week. They will stick a needle in my spine to extract a tiny piece of the tumor which will be analyzed to see what it's made of, and if it is indeed hormone positive. Then, Dr. Sara will make a decision on treatment.

I'm scheduled to have the bone biopsy at the hospital on Tuesday. It will be similar to the liver biopsy I had three years ago, except this time the needle will go in my spine instead of my liver.  In fact, the same doctor who did my liver biopsy will also do this procedure. I will get a local anesthetic, and probably also some kind of sedative so it should not hurt (hopefully!).

I will get the results the following Monday, and that's when I'll find out what my treatment moving forward will be. I have been on a hormone treatment before - namely Tamoxifen, which is a daily pill that luckily did not cause any side effects for me. However, I imagine there are other types of hormone treatments as well and so we'll just have to wait until next Monday to know what it will be (if it is indeed a hormone treatment that is added).

This experience of test results that are "some areas up, some areas down" has become a pattern, and it is definitely frustrating. My Dad calls it Whac-a-Mole because it seems that as soon as we knock down one area, another pops up. While I am very thankful that my test results continue to not be "catastrophic," just once I'd like to have some all-around positive results.

Maybe this new treatment will do the trick and next time my wish will come true!

Monday, January 21, 2013

Tumor Markers

Just a quick post with some good news... On Friday, I had treatment #3 of the latest chemo regimen (Herceptin, Pertuzamab, Taxotere) and got some good news - my tumor markers are DOWN! And not just down a little, they are down a lot - from 700+ to around 200.

And these results came in after only one treatment - even Dr. Sara says this is "big," and if you've been following along you already know that Dr. Sara does not sugarcoat anything!

They even showed me the graph - it looks like a mountain.  You can see a sharp incline in early December before my first treatment of the new regimen, and then it's a pretty steep drop after treatment #1.

Obviously this is very good news, as it tells us that the chemo is doing it's job. In addition, during this week's clinical exam, Dr. Sara could barely feel the lymph nodes in my neck, and he also could not feel anything in my abdomen/liver (unlike last time).  Further proof this new regimen is looking pretty effective.

Of course, while all of this is very encouraging, it's also important not to jump to conclusions - this certainly doesn't mean that I am cured, or will be cured, and it doesn't mean that this new chemo is going to work forever.  All it means is that it's working right now, which is amazing and good enough for me right now!

It's even better because this chemo continues to give me no real problems on the side effect front. In fact, the pre-meds I have to take to ward off side effects are giving me more trouble than the chemo itself. I have to take Dexamethasone twice a day the day before, the day of, and the day after chemo.  It tends to make my mouth taste funny, and it's also been affecting my sleep.

I told Dr. Sara about this and he said that next time, I get a 50% off Spring sale - meaning I only have to take half of the dose I normally take.  As long as my feet don't swell (one of the side effects it wards off), I will be able to continue on the half dose and that should alleviate the mouth/sleep issues.

So all in all, it was a very good week at chemo!  Until next time...

Sunday, January 6, 2013


Happy New Year! This year I resolve to be a better blogger. I hate, hate, hate it when I end up making promises I can't keep, so I hereby resolve to blog at least once a month. There, now that it's out in the universe, I will make it happen!

For me, January brings more than cold, dreary weather; a re-dedication to healthy eating and fitness plans; and NFL playoffs (go Packers!). It also brings my "Cancerversary," i.e. the anniversary of the day I was first diagnosed. Some people refer to their "Cancerversary" as the day they completed treatment or were declared cancer-free, but since I don't and frankly aren't likely to have one of those days, at least not anytime soon, I'm sticking with the first definition.

On January 14th, it will be three years to the day that I found out I had breast cancer. I think back to that day and how my mind was reeling with the unknown. Even though in my calmer moments I knew that statistically, most people survived breast cancer just fine, I couldn't help thinking things like "I hope I'm still here next Christmas." Well, I did make it to that Christmas, and the one after that, and the one after that.

And while I still have advanced disease and am still a regular at the Oncology ward at Roosevelt Hospital, I am also still thriving. I still work full-time, travel, and live a full life, despite my diagnosis.

Back on January 14, 2010, I could not have imagined that would all be true despite my dire diagnosis. So for that, I am very, very thankful. I'm not really sure how I feel about the word "Cancerversary," because is the day you receive devastating news really something to put a celebratory notion to?  But if I think about where I am now, versus where I saw myself at this point three years ago, then yeah - that is something to celebrate!

When we last left off, I had started on the new chemo regimen of Avastin and Abraxane. All went fine with that, until my next scans came up in August. Mixed results once again - some cancerous areas in my body were increasing, while others were decreasing. And no, there was still no way to tell quantitatively if there was more or less cancer in my body.

So, Dr. Sara changed my treatment once again. This time, I was put on Adriamycin, Cytoxan and 5-FU. The minute I heard "Adriamycin" I thought "The Red Devil."  You see, I'd heard about this drug. It's been around for a long time so I've read about it in various cancer articles and books. It gets its nickname from its red color (it even turns your pee orange - party trick!), but also because of it's brutal side effects.

Luckily, Dr. Sara assured me that it's not really considered "The Red Devil" anymore because anti-nausea drugs have come such a long way that they can now effectively combat the side effects.

And, surprise, surprise, Dr. Sara was right. I did have some occassional chemo-related fatigue and appetite issues (after one treatment, I only wanted to drink iced tea; after another, it was birch beer), but all in all, it was not bad at all.

Dr. Sara could tell the treatment was doing its job because the lymph nodes in my neck would either stay the same or decrease when he examined them every three weeks I was there for treatment.

But alas, you can't REALLY know what's going on until you get scanned again. My next scan was scheduled for October 30th, but you may have heard about this little incident we had here called Hurricane Sandy.  As it turned out that crane that was dangling from a building in NYC during the storm that was all over the news was just a couple blocks from the radiology place! Not to mention the fact that I was stranded in my apartment in Hoboken for 2 days until the flood waters on my street receded and I could flee to Mom and Dad's, where I was a refugee for a week and a half.

I was determined not to miss treatment though, so even though it took us FOUR HOURS to get to the hospital on the Thursday after the storm (when it should only take about an hour and a half from my parents' house), we made it.

But of course, that scan did not happen as planned, so instead Dr. Sara said we would go one more cycle, and then get scanned after Thanksgiving.

Side note - they have changed the guidelines for the no carb, no sugar diet I need to follow the day before the scan... it's even more restrictive now. So I had to change the PET scan diet routine I had gotten used to - it's all about cheese-less veggie omelets and salad now. No fruit whatsoever, not even apples and blackberries which used to be OK; no cheese; and no yogurt which also used to be allowed. Ugh; at least it's only one day every four months or so!

This latest scan showed results much like the previous two - mixed.  The cancer in all areas of my body except the liver, including my lymph nodes, spine, abdomen, were all decreased or unchanged.  But, there are new lesions in the liver, so another change to treatment was in order.

Of course, the liver is the only vital organ the cancer is in, so it's disheartening that that is the one place the cancer was increasing.  But Dr. Sara reminded me that the liver is one of the most resilient organs in the body, and he assured me that he didn't expect me to start experiencing any effects from the cancer itself, which was good news.

With most cancers, chemo tends to treat all the cancer in the body equally, as it's a systemic treatment. But sometimes with breast cancer specifically, they see cases like mine where some areas can be up while others are down.

Now, I have not been on Herceptin, or any HER-2 drug in about a year, so Dr. Sara's theory is that perhaps the cancer in the liver contains more HER-2 receptors than the cancer in the other areas of my body, which would explain why my most recent traditional old-school chemo regimen wasn't being effective there.

So my new treatment cocktail includes a return to some old favorites. Welcome back Herceptin and Taxotere! They are now joined by newcomer to the party, Pertuzamab.  Pertuzamab is a HER-2 drug very similar to Herceptin, but studies show the two drugs taken together are more effective than either on their own. And Taxotere is more of a traditional chemo drug, which was part of my original chemo regimen back in 2010.  The thinking is that hopefully the Herceptin and Pertuzamab will attack the cancer in the liver, while the Taxotere will keep the other areas in my lymph nodes, etc., quiet.  It sounds like a war strategy, doesn't it?

I've now had two treatments of this new regimen and so far, so good. These drugs are much milder on the side effects scale than my most recent regimen, and that wasn't even that bad.

I did have the new experience though of having an initial reaction to the new drug.  The very minute the Pertuzamab started dripping into my bloodstream, I suddenly got chills. My fever had risen slightly, and my blood pressure was really low. This is a common reaction to any new drug, but it was new for me as I've been on LOTS of new drugs and had never had any problems before. I was given Demerol to combat the reaction, which made me really drowsy - I basically took a nap the rest of the day in the chemo chair.  Dr. Sara was not too concerned and said he did not expect it to happen again, and luckily it did not when I had my second treatment of this regimen last week.

One side effect of the Taxotere is hair loss though, so I will not be getting my hair back anytime soon. Sure enough, right on schedule about 18 days after my first treatment, I started noticing my hair falling out again.  Now, my last few treatments have all caused hair loss and I've noticed it kind of ebbs and flows... it will come out heavily for a while starting the requisite 18 or 19 days after treatment, then it will slow down, then it might start up again, etc.  The result being that right now I have what looks like a thinning buzz cut.  It's not attractive to say the least, though Dr. Sara was quite amazed that I have as much hair as I do even after the Red Devil, I mean Adriamycin.

I have pretty much been "wigging it" since we lopped off what remained of my hair last Memorial Day. And I have added a new style to my wig repertoire as well:

I'm BLONDE! (PS aren't Claire and Ben just the cutest?) This wig is courtesy of the American Cancer Society. The NYC office runs a program providing free wigs to cancer patients.  My friend Bernadette and I had fun trying on the different styles.  Here is one we passed on; I call it my "Vegas look":

And lastly, I'm FAMOUS!  Well, not really, but back in August I was interviewed for a CBS NY special that aired in September leading up to the Komen race. They did a segment highlighting all the great programs at Roosevelt, including music therapy.  Here is the link; you can see me just before the 2:00 part. You will also see Dr. Sara and some of my favorite nurses: http://newyork.cbslocal.com/video/7706895-2012-susan-g-komen-race-for-the-cure-special-part-3/

And here's a pic my Mom took of the "shoot":

Until next time (which will be February - I promise!)...