Celebrating Emily's Life - Part 3

Katie's Eulogy for Emily:

WE LOVE YOU TO THE MOON AND BACK, EM!

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.

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/

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.

Emily's Entourage

Hello, this is Sara, Emily’s sister.  I wanted to write a post to give an update on Emily.  On September 5^th 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.

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.