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.