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.

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!

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!