tag:blogger.com,1999:blog-7022744530810788742024-03-12T20:54:29.368-04:00The Bright Side: Breast Cancer at 31Keeping people "abreast" (ha ha) on my fight against cancer, staying positive and looking for the silver lining along the way...Sarahttp://www.blogger.com/profile/03112988619797954706noreply@blogger.comBlogger61125tag:blogger.com,1999:blog-702274453081078874.post-46376935228903115632013-10-29T21:25:00.004-04:002013-10-29T21:27:20.651-04:00Emily's LegacyAs 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 <a href="http://thehelensawayafund.org/The_Helen_Sawaya_Fund_home_page.html">Helen Sawaya Fund</a> and the <a href="http://pinkdaisyproject.com/">Pink Daisy Project</a>. Both of these charities were very important to Emily and she benefited from them during her fight with breast cancer.<br />
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Emily's friends have found some other ways to raise money in her memory. <a href="http://newyork.langhamplacehotels.com/restaurants/hotel-dining-measure.htm">The Measure Lounge at the Langham</a> 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! <br />
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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.<br />
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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 <a href="http://www.learnvest.com/2013/10/the-cost-of-breast-cancer-how-i-coped-with-a-terminal-diagnosis/?fb_action_ids=10202511992506247&fb_action_types=og.likes&fb_source=aggregation&fb_aggregation_id=288381481237582">Learnvest.com</a>. 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.<br />
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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 <i>The Great Gatsby</i> (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!<br />
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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.Sarahttp://www.blogger.com/profile/03112988619797954706noreply@blogger.com1tag:blogger.com,1999:blog-702274453081078874.post-7775346598464768732013-10-14T15:17:00.000-04:002013-10-14T15:17:51.970-04:00Emily's Life in PicturesHere 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.
<embed type="application/x-shockwave-flash" src="https://static.googleusercontent.com/external_content/picasaweb.googleusercontent.com/slideshow.swf" width="400" height="267" flashvars="host=picasaweb.google.com&hl=en_US&feat=flashalbum&RGB=0x000000&feed=https%3A%2F%2Fpicasaweb.google.com%2Fdata%2Ffeed%2Fapi%2Fuser%2F112288968994326828968%2Falbumid%2F5919822954308177393%3Falt%3Drss%26kind%3Dphoto%26hl%3Den_US" pluginspage="http://www.macromedia.com/go/getflashplayer"></embed>Sarahttp://www.blogger.com/profile/03112988619797954706noreply@blogger.com3tag:blogger.com,1999:blog-702274453081078874.post-33230559364151599182013-10-03T20:01:00.002-04:002013-10-03T20:05:15.883-04:00Celebrating Emily's Life - Part 3<div align="center" class="MsoNormal" style="line-height: 200%; text-align: center;">
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<span style="font-family: Georgia, Times New Roman, serif;">Katie's Eulogy for Emily:</span></div>
<b><span style="font-family: Georgia, Times New Roman, serif;">WE LOVE YOU TO THE MOON AND BACK, EM!<o:p></o:p></span></b></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">The most important trait though about Em, </span><span style="line-height: 200%;">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.</span></div>
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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.</div>
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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. </div>
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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.</div>
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Sarahttp://www.blogger.com/profile/03112988619797954706noreply@blogger.com2tag:blogger.com,1999:blog-702274453081078874.post-1018160241682256832013-10-03T17:21:00.001-04:002013-10-03T17:21:24.981-04:00Celebrating Emily's Life - Part 2<div class="MsoNormal">
Sara's Eulogy for Emily:</div>
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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.</div>
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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.</div>
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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. </div>
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Rest in peace, Emily.<a href="" name="_GoBack"></a> I love you.</div>
Sarahttp://www.blogger.com/profile/03112988619797954706noreply@blogger.com1tag:blogger.com,1999:blog-702274453081078874.post-83547641600331160432013-10-03T17:14:00.000-04:002013-10-03T17:14:29.028-04:00Celebrating Emily's Life - Part 1<div class="MsoNormal" style="text-align: left;">
<span style="font-family: Georgia, Times New Roman, serif;">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.</span></div>
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<b><span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;"><br /></span></b></div>
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<b><span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;">Dad’s Eulogy
for Emily<o:p></o:p></span></b></div>
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<b><span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;">October
2, 2013<o:p></o:p></span></b></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;">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.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;">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.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;">But
that is what has happened.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;">Our
hearts are absolutely broken over our loss.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;">At
a time of great loss it helps to focus on what we still have.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;">One
thing that we have is the knowledge that Emily’s life was a life well
lived. She excelled academically and
graduated from <st1:place w:st="on"><st1:placename w:st="on">Villanova</st1:placename>
<st1:placetype w:st="on">University</st1:placetype></st1:place> 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.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;">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.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;">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.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;">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.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;">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.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;">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/<st1:place w:st="on"><st1:placename w:st="on">Roosevelt</st1:placename> <st1:placetype w:st="on">Hospital</st1:placetype></st1:place>. Dr. Sara is with us this morning – thank you
Dr. Sara.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;">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.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 14.0pt;">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.<o:p></o:p></span></div>
Sarahttp://www.blogger.com/profile/03112988619797954706noreply@blogger.com1tag:blogger.com,1999:blog-702274453081078874.post-25925328683645465372013-09-28T12:22:00.000-04:002013-09-28T12:22:46.743-04:00Rest in Peace Emily<div class="MsoNormal">
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.<o:p></o:p></div>
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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.<o:p></o:p></div>
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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.<o:p></o:p></div>
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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.<o:p></o:p></div>
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Thank you, Emily’s Entourage, for your amazing support,
prayers, and love.<o:p></o:p></div>
<span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><br /></span>
<span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Her obituary and arrangements will be posted
here later today: <a href="http://saulfuneralhomes.com/">http://saulfuneralhomes.com/</a></span>Sarahttp://www.blogger.com/profile/03112988619797954706noreply@blogger.com4tag:blogger.com,1999:blog-702274453081078874.post-37197964420183333472013-09-25T16:29:00.001-04:002013-09-25T16:34:45.802-04:00Emily's Extraordinary Entourage<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">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. </span><span style="font-family: Georgia, 'Times New Roman', serif;">Our
whole family is comforted by and appreciates the support and prayers that are
being offered.</span><span style="font-family: Georgia, 'Times New Roman', serif;"> </span><span style="font-family: Georgia, 'Times New Roman', serif;">We will continue to
provide updates.</span></div>
Sarahttp://www.blogger.com/profile/03112988619797954706noreply@blogger.com3tag:blogger.com,1999:blog-702274453081078874.post-33768245032286013322013-09-20T16:10:00.002-04:002013-09-20T16:10:40.044-04:00Emily's Entourage<div class="MsoNormal">
Hello, this is Sara, Emily’s sister. I wanted to write a post to give an update on
Emily. On September 5<sup>th</sup> 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.<o:p></o:p></div>
<div class="MsoNormal">
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.<o:p></o:p></div>
<div class="MsoNormal">
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.<o:p></o:p></div>
<div class="MsoNormal">
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.<o:p></o:p></div>
<div class="MsoNormal">
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.</div>
<br />
<div class="MsoNormal">
Thank you for your support and prayers. I will update again soon.</div>
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<a href="http://3.bp.blogspot.com/-GA4T5FaDbsE/Ujyqo26F4TI/AAAAAAAAAmE/4ccvCPrD1ww/s1600/Em+Jess+Louise.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-GA4T5FaDbsE/Ujyqo26F4TI/AAAAAAAAAmE/4ccvCPrD1ww/s320/Em+Jess+Louise.jpg" width="320" /></a></div>
<o:p></o:p>Sarahttp://www.blogger.com/profile/03112988619797954706noreply@blogger.com3tag:blogger.com,1999:blog-702274453081078874.post-45352373904767016452013-09-04T17:24:00.001-04:002013-09-04T17:24:36.399-04:00I Always Knew This Day Would Come<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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.</div>
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<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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).</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br />
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.<br />
<br /></div>
<div style="text-align: justify;">
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. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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".<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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!<br />
<br />
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:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinZhJCo5Rf0H_R_-JFRsLBuDvvenKvCX1AzFFFsG0qWExqV-bS82O8_GyVyZJmR-26SdLNepaY9VrvlJfrxhyhzWmbxzWSLnaZe98gcK5lZaGbHHetxbeG22ZmN6jfpy0h2ywQ401vueMb/s1600/1016105_10201739935845313_1334476794_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinZhJCo5Rf0H_R_-JFRsLBuDvvenKvCX1AzFFFsG0qWExqV-bS82O8_GyVyZJmR-26SdLNepaY9VrvlJfrxhyhzWmbxzWSLnaZe98gcK5lZaGbHHetxbeG22ZmN6jfpy0h2ywQ401vueMb/s320/1016105_10201739935845313_1334476794_n.jpg" height="320" width="212" /></a></div>
<br />
<span style="font-family: inherit;">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.</span><br />
<span style="font-family: inherit;"><br /></span>
<div style="text-align: justify;">
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.<br />
<br />
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.<br />
<br />
I know this is packing a lot of news into one post but I appreciate everyone's concern!<br />
<br />
***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.<br />
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Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-702274453081078874.post-69447909042335184142013-05-12T16:56:00.002-04:002013-05-12T16:56:39.888-04:00Tumor Markers Going Down, Down, DownI 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!<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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!<br />
<br />
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.<br />
<br />
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!Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-702274453081078874.post-85943354095590414712013-04-07T21:40:00.000-04:002013-04-07T21:41:07.914-04:00Bone Biopsy Results, Part Two<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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!</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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!</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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!</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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!</div>
<br />
<br />Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-702274453081078874.post-19908151307950710202013-03-17T12:56:00.002-04:002013-03-17T12:56:38.724-04:00Bone Biopsy and Results, Part One<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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!).</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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).</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
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!)</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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!</div>
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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.</div>
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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.</div>
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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?</div>
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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.</div>
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You see, there are three <i>known</i> 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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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Until then...</div>
Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-702274453081078874.post-56344938473153729122013-03-03T20:37:00.004-05:002013-03-03T20:37:20.026-05:00Whac-A-Mole<div style="text-align: justify;">
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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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!).</div>
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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).</div>
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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.</div>
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Maybe this new treatment will do the trick and next time my wish will come true!</div>
Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-702274453081078874.post-60076508228105540562013-01-21T19:30:00.003-05:002013-01-21T19:30:40.603-05:00Tumor Markers<div style="text-align: justify;">
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.</div>
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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!</div>
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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.</div>
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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.</div>
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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!</div>
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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.</div>
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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.</div>
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So all in all, it was a very good week at chemo! Until next time...</div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-702274453081078874.post-73304929064947497472013-01-06T11:50:00.002-05:002013-01-06T11:50:48.577-05:00Cancerversary<div style="text-align: justify;">
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!</div>
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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.</div>
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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.</div>
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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.</div>
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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!</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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!</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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?</div>
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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.</div>
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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.</div>
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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.</div>
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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:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqsh8J4mQz1uFbvmsbeVJRMp25jCtYvpVy5C1Y0L20dnfBWfX2-hyq3se-LBp-Q9TK1a5Vz8iJX0qOlrIyPLD5L0l985eYvlk3tf_xRGOtLBmdvSIL6ltCUpj7NvG5elFjvvGBFM6Lhr5U/s1600/Emily+blonde+Claire+Ben.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqsh8J4mQz1uFbvmsbeVJRMp25jCtYvpVy5C1Y0L20dnfBWfX2-hyq3se-LBp-Q9TK1a5Vz8iJX0qOlrIyPLD5L0l985eYvlk3tf_xRGOtLBmdvSIL6ltCUpj7NvG5elFjvvGBFM6Lhr5U/s320/Emily+blonde+Claire+Ben.jpg" width="213" /></a></div>
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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":</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCLkY22Deq2U8bzeGXNKojtLYIOCmHY1LFDmuhug_LTlKg_bK3-q-9BCuiTP-4xQdGaFY3CA4MC7p8duUZgA_6wbk09D6eZDefGO_cyku3KL6g6NkL6rqXXA4kV9pi1oAvXUffmQ2j4Mek/s1600/2012-09-24_17-26-26_383.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCLkY22Deq2U8bzeGXNKojtLYIOCmHY1LFDmuhug_LTlKg_bK3-q-9BCuiTP-4xQdGaFY3CA4MC7p8duUZgA_6wbk09D6eZDefGO_cyku3KL6g6NkL6rqXXA4kV9pi1oAvXUffmQ2j4Mek/s320/2012-09-24_17-26-26_383.jpg" width="180" /></a></div>
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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: <a href="http://newyork.cbslocal.com/video/7706895-2012-susan-g-komen-race-for-the-cure-special-part-3/">http://newyork.cbslocal.com/video/7706895-2012-susan-g-komen-race-for-the-cure-special-part-3/</a></div>
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And here's a pic my Mom took of the "shoot":</div>
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Until next time (which will be February - I promise!)...</div>
Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-702274453081078874.post-34804379972027094252012-07-15T14:52:00.000-04:002012-07-15T14:58:59.893-04:00Catching Up<div style="text-align: justify;">
Yes, yes, I know it's been more than six months since my last post. It's not that things haven't been happening on the cancer front - they have (but don't worry, nothing tragic) - it's more that 1) I've been busy living my life and 2) lately, in the limited free time that I have, I've found myself not wanting to really sit down and think about cancer. But that being said, here is the Cliff Notes version of what's been happening over the last 6 months, and I really will try not to go so long without updating next time.</div>
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Now, where did we leave off? Oh yeah, my cancer markers spiked, the PET showed some new spots, and so my treatment was changed to Halaven. The Halaven went well... once again, as seems to luckily be the pattern with me, I did not have any adverse side effects. The worst that happened was that my nails became really brittle and split, and I had to keep them really short. Miniscule in the grand scheme of things.</div>
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Better yet, the drug seemed to be working. In January, Dr. Sara re-ran the CEA test and the numbers had dropped significantly. I remember checking my phone after a meeting with a client on a Friday morning, and I had a message from Eugenie (Dr. Sara's nurse practitioner) with the favorable results. Now that's about the best news I could've received that day. I saved that message for awhile!</div>
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<span style="font-family: inherit;">I got re-scanned again in March, and the results were mixed. The cancer in my liver and in some of the lymph nodes by my liver had decreased; some of the other spots (like the spot on my spine) had not changed; but there were also two spots in my abdomen which had increased and a new spot in lymph nodes on the right side of my neck (in addition to the left which was discovered in December).</span><br />
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<span style="font-family: inherit;">There is unfortunately no such thing as a test that measures all the cancer in your body to be able to tell collectively whether there are more or less cancer cells than last time, so it was hard to say if the results were better or worse, but we were encouraged by the fact that there were decreases in the more "important" areas (i.e. the liver).</span><br />
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<span style="font-family: inherit;">So Dr. Sara decided to keep me on the Halaven, but repeat the scan soon - in May - to keep a bit of a closer eye on things.</span></div>
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<span style="font-family: inherit;">And then in April during a clinical exam, he could feel that the lymph nodes in my neck were swollen - a sure sign that the cancer there was increasing. So I was scheduled for another PET scan and even before I had it Dr. Sara had decided on my new course of treatment.</span></div>
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<span style="font-family: inherit;">The PET showed that some of the existing spots - including the liver - were more "active" (though not necessarily increased) and of course the cancer in the lymph nodes by my neck had increased, which we already knew.</span></div>
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My new treatment - which I am still on - became the combined forces of Avastin and Abraxane. Both drugs are 30-minute infusions, and I now go to chemo every week for three weeks, then have one week off. On weeks 1 and 3, I get both drugs, while on week 2 I only get the Abraxane.</div>
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The first day of my new treatment was extra long since the Avastin had to be administered over 90 minutes, to ensure no adverse reactions. I was in the infusion suite all day - it was like back to the early days of chemo. But, of course, I did not have any adverse reactions so the next time I received Avastin it was a 60-minute infusion, and now it is down and holding at 30 minutes.</div>
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One major side effect of this new treatment is that I have lost my hair again - well, sort of. It became very brittle and course a few weeks after treatment started - what I call "chemo hair" - and then it started falling out about a week or so before my birthday (May 29). Even though my hair is so thick that even after week of significant hair loss you still could not tell by looking at me, it was super annoying. I was constantly vacuuming my bathroom floor and after a week I was tired of pulling fist-sized clumps of hair out of the shower drain.</div>
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So over Memorial Day weekend, my brother-in-law Kevin once again put his shears to use and shaved my head. What a relief!</div>
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Oddly enough, it seems like my hair is growing back - I kind of have a crew cut now - but it's still very thin in the spots just above my temples. I look like I have male pattern baldness, so I pretty much keep it covered with my wigs or any variety of hats/scarves. I have gone running a few times and gone swimming in the ocean with nothing on my head... it's so hot out, that I just don't care sometimes! Luckily I haven't noticed any staring.</div>
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I've also noticed a little bit more fatigue than I'm used to. It's manageable; I just find that I need more like 8.5-9 hours of sleep these days rather than the standard 8. I'm trying to make an effort to go to bed a little earlier, especially during the week, but it's easier said than done.</div>
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On the bright side, my nails are no longer brittle and splitty; in fact they seem stronger than ever. Funny how the different drugs affect things differently.</div>
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And the new treatment is working. Almost immediately, we noticed a decrease in the lymph nodes. As Dr. Sara said, he of course does not like the fact that I have cancer in my lymph nodes, but it does apprise him the opportunity to be able to tell right away - without a scan - if the treatment is working.</div>
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I've now completed two full cycles of the new treatment, and will start cycle 3 this week. In the last few weeks there has not been a change in the lymph nodes, but this is not cause for alarm or reason to think the treatment is no longer working, since as long as it's not increasing it's good, and there could also be scar tissue there as well.</div>
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Pending no more unforeseen drama, my next PET scan will be after the next cycle, in August. I am coming up on a year since the cancer was discovered to have returned, so here's hoping for a better August than last year!</div>
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As I said in the beginning of this post, one of my "excuses" for not posting in so long is that I've been busy living my life. I am still working full-time and full-force; in fact, iVillage.com did a nice piece on me for doing just that, which you can check out here: <a href="http://www.ivillage.com/real-women-i-kept-working-while-i-had-cancer/4-a-460382?p=2" style="background-color: white;">http://www.ivillage.com/real-women-i-kept-working-while-i-had-cancer/4-a-460382?p=2</a></div>
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I am still traveling, both for fun and for work - so far in 2012 I have been to Seattle, Las Vegas, San Diego, Dallas, upstate New York (twice), Washington, DC (a few times), Portland (Oregon), the Jersey shore (a lot), and also have upcoming trips planned next month to Bedford, PA; Denver and Las Vegas (again).</div>
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I've also tried to stay active. I started off the year great with a 5-mile "Hangover" run in my hometown of Hamilton. Here is my sister - pregnant at the time - and me at the finish line:</div>
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While my commitment to staying active has kind of waned in the last few months as I've been adjusting to this new treatment, the summer has re-inspired me to get back to the gym!</div>
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And most importantly, there is a new member of our family. My nephew Benjamin John Kirner was born June 17th. Now Claire has a little brother!</div>
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Here's a picture of the little guy:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieBuuiwDQ-0I7KVByZqRoomul__Cm6eHJ2WLRRiVRen0H-gBREDWLAi3pXqser3uL2MIZ4atagEJWDBFDg5JdK3N1ZraI7croqPt2J5n_ixzJP_oAfEbedVGqcgyg6Jk-0NhHFAXWujqCA/s1600/Ben.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieBuuiwDQ-0I7KVByZqRoomul__Cm6eHJ2WLRRiVRen0H-gBREDWLAi3pXqser3uL2MIZ4atagEJWDBFDg5JdK3N1ZraI7croqPt2J5n_ixzJP_oAfEbedVGqcgyg6Jk-0NhHFAXWujqCA/s320/Ben.jpg" width="320" /></a></div>
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And here is a picture of me with both of my little munchkins:</div>
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So you can see, it's been a busy year... until next time!</div>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-702274453081078874.post-91521355634130612011-12-04T10:48:00.001-05:002011-12-04T11:59:43.050-05:00A Little Bit of (Unwelcome) Drama<div style="text-align: justify;">
Last time I blogged, the plan was to get re-scanned in November. When we looked at the calendar we realized this meant my scans would be during the week of Thanksgiving, so Dr. Sara decided that rather than add some unnecessary drama to the holiday, we'd wait another 3 weeks and do them in mid-December. This would give the drugs a little more time to work anyway, since between all the co-pay and pre-authorization stuff it took a little bit of time from when the drug was first prescribed for me to actually get it and start taking it anyway.</div>
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So, throughout October and November, it was business as usual. I took my Tykerb and Tamoxifen dutifully every day, and went every three weeks for Herceptin. I continued to feel no side effects from any of the drugs, and stayed active and healthy (even running a 5K in freezing, windy and rainy weather!). I even had a music therapy session during one of my treatments (the playlist, handpicked by me, included Coldplay, Kings of Leon and Florence and the Machine). I even sang along and played accompanying instruments, including a xylophone and the "ocean drum" - and didn't frighten everyone out of the Infusion Suite!</div>
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My most recent treatment was the Tuesday before Thanksgiving, and on that day I set up my next PET/CT scan, which was scheduled for December 13th, with the "results show" taking place during my next Herceptin treatment on December 15th.</div>
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And then this past Monday I got an unexpected call from Dr. Sara. Much as I love Dr. Sara, it's usually not a good sign when he calls me out of the blue. He was concerned about the results of the blood test I had the week before. One of the cancer markers they test for called CEA, which for me was always in the normal range, had suddenly spiked. He told me that this is most likely an indication that the cancer is spreading and that he wanted me to get scanned right away so we could see what we're dealing with as he was almost certainly going to have to change my treatment.</div>
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My reaction: "well, this sucks". Dr. Sara agreed with me. I then asked him if this test was pretty foolproof or if it was known for false positives; I was trying to look for any kind of bright side to this news. Dr. Sara said that yes, of course false positives are possible, but that he does not think that is what is happening here - he told me that he expected my scans to be worse than they were in August. Dr. Sara has said from day one that he would always be 100% honest with me and would never sugarcoat things, and he has stayed true to his word; something I really appreciate even though this was a crappy and extremely emotional draining call to get.</div>
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So, my PET/CT was quickly scheduled for Wednesday. On Tuesday I followed the required special diet (yogurt! salad! eggs!), and the scan was pretty routine. For my contrast "milkshake" I chose apple this time; seemed like an appropriate seasonal choice.</div>
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It is amazing what the physical reaction to stressful news like this can be; a lot of people would be losing sleep but for me it's the opposite. Almost as soon as Dr. Sara called me on Monday, I felt a crushing exhaustion. I even went to bed at 9pm one night and slept for 10 hours - that is not like me at all (I'm more of a night owl), but I guess this kind of stress takes a lot out of you.</div>
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And then on Thursday, my parents and I went to find out the results of my scan. Dr. Sara cut right to the chase. If you remember, in August when my scans showed that the cancer was back, it was in three main places: my liver, lymph nodes near the liver, and a small spot on my spine. This week's scan showed that the cancer in the liver was actually slightly decreased, the spot on the spine was unchanged, and the cancer in the lymph nodes near the liver was slightly increased. In addition, there are new spots lighting up in lymph nodes on the left side of my neck.</div>
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So, this was obviously not great news, because you never want to see new spots, but Dr. Sara said that it was not nearly as bad as what he thought we might see. He thought there was a good chance we'd find that it was rampant through the liver, or that it had spread to my lungs or some other vital organ. Luckily, this was not the case.</div>
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Compared to what we thought we might hear that day, we were all pretty relieved to learn that the news was not as dire as it could have been. It's funny how your reaction to things all depends on what your expectations are. If my blood test had not spiked and these were my routine scan results, we probably would have been a lot more disappointed because we would have gone in hoping for no new or increased spots. But, when you are pretty much expecting it to be bad, and it turns out not to be quite as bad as you were thinking, it really improves your reaction to things.</div>
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So, what does this mean for my treatment? Well, my treatment will completely change. I am being taken off all of the drugs I am now on - Herceptin, Tykerb and Tamoxifen - and I will start getting a relatively new chemo drug called Halaven. This is a 5-minute infusion which I will get at the hospital. The cycle is "two weeks on, one week off" - just like the Navelbine was. I start tomorrow, Monday, Dec. 5, and I will go again next Monday the 12th, then have a week "off" then the cycle will start again on Dec. 27th.</div>
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Dr. Sara said this drug is very well tolerated, meaning there are not any common crazy side effects. Some people feel a little fatigue, and some people experience neuropathy (tingling in hands and feet) but since I've been on chemo drugs where these side effects were much more common and I didn't have them, he expects that I won't really have a problem with this drug. Of course you never know how you're going to react to a new drug, but I've had a LOT of chemo drugs and luckily tolerated them all really well, so I'm pretty confident that will be the case with this one too.</div>
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We are going to try this drug for three months, and then - assuming I still feel good and no more blood tests spike between now and then - I will get scanned again in the beginning of March. Until then, I will keep living my life as normally as possible!</div>
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In other news, last time I mentioned that I had received some financial assistance from the <a href="http://www.patientadvocate.org/">Patient Advocate Foundation</a> and the <a href="http://pinkdaisyproject.com/">Pink Daisy Project</a> to help me with the exhorbitant Tykerb co-pays I had. Well, I have two more charities to add to that list! <a href="http://www.teamcontinuum.net/">Team Continuum</a> was very generous to me, providing $600 to my condo management company to pay off my condo fees for the next few months! And, <a href="http://www.cancercare.org/">CancerCare</a> provided me with more than $300 to help offset my financial burden as well! I can't even express how appreciative I am to these organizations for helping me through this difficult time. And I especially have to thank two people who put a lot of time and energy into researching programs I would qualify for and helping me to apply for them: my Mom, and Lori, the social worker at Roosevelt. All in all, with their help I ended up receiving assistance to help pay for more than half of the $5400 I had to pay in three months of Tykerb co-pays.</div>
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And luckily, the crazy co-pays did indeed end after three months, and not because Dr. Sara took me off the drug. In early November, I was able to change my health insurance plan, and under the new plan, my Tykerb co-pay became $30 vs. $1800. What a relief that was!</div>
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And finally, I have say thank you to all of you who donated to the Making Strides for Breast Cancer Walk that my family and I did on October 15th in Bedford Springs, PA. I really appreciate your generosity and know that your donations are going to a good cause to help other cancer patients like myself!</div>
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We had a great time - here are a few pictures from the weekend:</div>
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Here is all of us in our "Omni Army" team shirts before the walk.</div>
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My Mom and me in our "Survivor" gear:</div>
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The "Human Pink Ribbon" of survivors (my mom and I are near the top left):</div>
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Me and Claire:</div>
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Thanks again for all your support and in case I don't blog again this month, HAPPY HOLIDAYS to all!</div>
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<br /></div>Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-702274453081078874.post-3116897786758623252011-10-09T20:26:00.000-04:002011-10-09T20:26:57.959-04:00It's Back<div style="text-align: justify;">Unfortunately, the title of this post is not referring to the fact that I'm finally writing after a 3-month absence.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">On August 11th, I found out the results of my latest PET scan, and they showed that the cancer is back in my liver, lymph nodes (did you know there are lymph nodes near the liver? Just another fun fact you learn when you have cancer), and a tiny spot on my spine.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Needless to say, this has been a devastating blow to me and my family. Even Dr. Sara was surprised by the results and said he is as upset about them as he would be if it were his own daughter. But unfortunately, this is cancer we're talking about and as I've said before cancer is ruthless, unpredictable, and doesn't play by the rules.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Somewhere in the back of my mind I've always expected that I would likely have to deal with a recurrence at some point in the future, but I didn't think it would be so soon. I was JUST getting to that thing they call "survivorship". I finished radiation on June 24th and, except for my ongoing Herceptin treatments every three weeks, I was finally moving on after a year and a half of principal treatment. And then cancer goes and knocks me back down again (but fear not; I don't plan on staying down for long!).</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">After Dr. Sara delivered the bad news, and showed me the new areas on my scans (because, by the way, they are all new areas; this is not a matter of the previous liver and spine spots flaring up again), he told me what the new plan was.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">He prescribed an oral drug called Tykerb, which many studies have shown has a compound effect when given in conjunction with Herceptin. I now take 6 pills a day - 5 Tykerb and 1 Tamoxifen - and of course my three-week intervals of Herceptin continue.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I will be scanned again in November, and that is when we'll know if the new regimen is working. I asked Dr. Sara if it is possible that my November scans will be clear. He hemmed and hawed a little then said yes, it is <em>possible</em>; but he would be happy if my scans were either the same or (of course) showed less cancer than my August scans. But I'm an overacheiver so I'm going for clear!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I've been on the Tykerb for almost 2 months now, and so far I have experienced no side effects (from the drug or the cancer). Dr. Sara said the drug is pretty well tolerated over all, so that is good. I've also had no side effects from the Tamoxifen, which I've been on a little longer. The most common side effect of Tamoxifen is hot flashes, but I luckily haven't had any. (Of course, I was originally taking Tamoxifen as a preventative measure, but now I'm taking it as a proactive treatment. Dr. Sara said that it takes a few months to be able to tell if it's working, so here's hoping that it's doing its part.)</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">In fact, I <em>feel </em>healthier than I have in a long time. I've been eating healthier and even started working out again. I've had a lot of false starts over the last year and a half with the working out thing, but this time it seems to have stuck (so far). I finally mustered the motivation to go back to my kickboxing classes, which is something I loved to do before cancer, and now I go 2-3 times a week, in addition to running at least once a week. In fact, I even signed up for a 5K race in a couple weeks!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">All in all, I've been living my life as normally as I can.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Dr. Sara says that the fact that my body tolerates my disease and treatment so well is a big advantage in my favor. He said that he has had patients who have about the same amount of cancer as me, but they have lost 25 pounds (without trying) and are very weak. With me, you would never know, because my body tolerates it so well.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">So what if the Tykerb/Tamoxifen/Herceptin combo doesn't work? Well, Dr. Sara said that there are still A LOT of things in the arsenal to try. Luckily, with breast cancer, unlike a lot of other kinds including lung cancer, there are LOTS of drugs to try, and there is so much research being done that there are always new things coming out. So if my scans in November aren't what we're hoping for, it just means that we'll try something else.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Now, there's another side to this whole thing which was completely unexpected and unwelcome. It turns out that Tykerb is what is known as a "specialty drug" - I'm still not sure what this exactly means but I think it has to do with the fact that it's a relatively new drug and only available from one drug company.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">More importantly, it means that it's a very expensive drug. Now, I'm lucky enough to have health insurance but even with insurance, my co-pay is $1800/month. That's not a deductible or anything - that is what I have to pay EVERY MONTH. It's more than my mortgage. And it's not like Dr. Sara can prescribe something else that's similar but cheaper - Tykerb is the one and only drug of its kind (no wonder it's so expensive).</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I found this out a few days after I found out the cancer was back. Talk about being kicked when you're down. Luckily, there are co-pay relief programs out there to help out people like me who are suddenly faced with astronomical bills. My mom has made it her mission to try - and keep trying - each and every one she can find.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Of course, I don't qualify for many of these programs because several are income-based. However, there are some that are not, like the <a href="http://www.patientadvocate.org/patient_services.php?p=751">Patient Advocate Foundation</a>, which gave me enough funds to cover one co-pay! I was thrilled. My mom and I have also been working with the social worker at Roosevelt Hospital, who has been very persistent as well and has been helping me apply for various other programs. Through her help, I received $450 worth of gift cards for groceries (yay Trader Joe's!) and restaurants from the <a href="http://pinkdaisyproject.com/">Pink Daisy Project</a> to help offset the cost of my medical bills. I am so thankful to these programs for their assistance, and I hope that someday I'll be in the financial position to be able to thank them with a donation of my own.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">In other news, this coming weekend, on October 15th, my family and I will be walking in the Making Strides for Breast Cancer Walk in Bedford, PA, as part of the Omni Army team (the Omni Bedford Springs Resort there is a client of mine and we're going for a nice fall weekend getaway). If you would like to donate to our team, you may do so <a href="http://main.acsevents.org/site/TR?team_id=960923&pg=team&fr_id=36008&fl=en_US&et=SLX9VOIXmw_lrX8VW1w6ZQ..&s_tafId=881888">here</a>!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Also, I am quoted in the October issue of Prevention magazine! Cool, huh? You can see the story <a href="http://www.prevention.com/health/health/health-concerns/breast-cancer-new-treatments-to-prevent-cancer-recurrence/article/dbcafd9fd5412310VgnVCM10000030281eac____/3">here</a> (I'm at the very end).</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Thanks again to all my blog readers for your continued support!</div><div style="text-align: justify;"><br />
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</div>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-702274453081078874.post-13914650326637937102011-07-05T11:35:00.001-04:002011-07-05T11:36:40.673-04:00DONE!<div style="text-align: justify;">Well, after nearly 18 months of treatment, including two courses of chemo, two surgeries, and two courses of radiation, I am FINALLY DONE with principal treatment! Wahoo!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">My last day of radiation was Friday, June 24th. For the most part radiation went about as smooth as it could possibly go. During the last two weeks or so of treatment, I was definitely feeling the fatigue that I was told to expect as a side effect. It didn't really affect me too much - I still went to work and worked a full day every day after radiation, I just had to take it easy in the evenings and go to bed a little earlier. </div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">And even though I have never been a morning person, I was pretty proud of how promptly I would wake up at 6:45am every day (45 minutes earlier than my normal alarm wake-up time), and I was even early to treatment many days. But the last week I struggled to get up on time and may have hit the snooze button once or twice.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">During the last couple weeks I also started to notice some changes in the skin being radiated. It started to get a little pink and one area in particular on my chest started to itch. Dr. Evans said that it is pretty common to develop a little rash in that area, because due to previous sun exposure that spot often reacts a little differently to the radiation than other areas (like the actual breast) which presumably would not have had the same sun exposure. He did not want to give me hydrocortisone to treat it unless it got really bad, since the cream can constrict blood vessels and apparently blood vessels need to not be constricted to optimize healing. But luckily a little aloe did the trick!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">As I started my last week, I started to think that I had been really lucky that I didn't have to skip any treatments because of the machine breaking down. Apparently, it's somewhat common for that to happen with radiation treatment. Both of my parents had to miss two days of treatment each while they were going through it because of the machine going down, meaning their course had to be extended by two days to make it up.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">So of course just as I'm getting down to the home stretch and feeling pretty lucky that this didn't happen to me, I got a call on Wednesday night of my last week (with only two more days left!). The radiation therapist told me that after my treatment that morning the machine went down and hadn't been back up all day. So, before I came in the next morning, I should call to see if it was working or not. WHAT? I was thinking I was SO CLOSE! But luckily, the next morning the machine was working fine and I didn't have to miss anything or push my last day back at all. Whew!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">As I said, my last day was Friday, June 24th. I think I will always remember that day because it was not only the last day of radiation, but also the culmination of a year and a half of one major treatment after another. As I walked out of the hospital that morning, I got a little emotional just thinking about everything I have been through over the last 18 months. I almost could not believe I had finally reached the end of what I am calling "principal" treatment. It has been a long road. Yes, there were some tears that morning but they were tears of happiness and relief.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">And celebration! When I started radiation, the nurse who gave me my "orientation" told me that one of the medical oncologists - Dr. Sara - um, yes I know him! - always stresses that patients should plan something fun to look forward to after radiation because it is a celebration to have completed what can be a grueling ordeal. It did not surprise me in the least that Dr. Sara was the origin of that advice!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I did not have a party or anything to celebrate, since the fatigue does not magically go away once your last treatment is done, but I did have a very relaxing weekend at the beach, and that was about as much of a treat as I needed. Also, as a congrats on the end of treatment my family sent me 18 Magnolia Bakery cupcakes (my favorite!) to my office on my last day of radiation. And I don't mean to be selfish or anything but I have not shared them... I am savoring every one!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Here's the first one I ate (mmmm coconut), about 2.5 seconds after they arrived:</div><div style="text-align: justify;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4vhOafjtppFg2yiD4qW-Q6BtLpKIBeTB7InEJ-KlPuh1_-as8hP3TUV_U0YC9JvuizDnwTiOkNpFBn2qZQnCc8Tz0gTr_oBZ5scWkgn7gT7tmJUkDznIvOc3uJ2_rX7eT7-puaVTXn7JQ/s1600/cupcake.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" i$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4vhOafjtppFg2yiD4qW-Q6BtLpKIBeTB7InEJ-KlPuh1_-as8hP3TUV_U0YC9JvuizDnwTiOkNpFBn2qZQnCc8Tz0gTr_oBZ5scWkgn7gT7tmJUkDznIvOc3uJ2_rX7eT7-puaVTXn7JQ/s320/cupcake.jpg" width="320" /></a></div><br />
<div style="text-align: justify;">Now, as I said just because radiation is over doesn't mean that the side effects instantly disappear. At my discharge session with the nurse she told me the fatigue will start to wane and every week I will feel better and should feel totally back to normal within a month, if not sooner. Actually, I think it was more like a week because it's now 11 days since my last treatment and I feel pretty good and am not really noticing the fatigue anymore.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">She also told me to avoid getting sun on the affected area at all costs. Which is kind of a bummer since it is the height of the summer and all. I can still go to the beach, of course, I just have to make sure I am covered up, so the last couple weeks I have been wearing my new rash guard or a t-shirt to the beach. Not really the look I usually go for on the beach (especially since I just bought two new cute coverups - ugh!), and I'm not loving the farmer tan I've developed, but I guess it could be worse.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Here's a picture of me and Claire sitting by the pool on Fourth of July weekend:</div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_dJACxpz2cuQPXh44lyKDSHmx4ajeg5yM7ZXImbxraWwbrCIaiB9iQmZ_nNub2AWjQ3or29lDl47-ZuBSKzmmdD9kjq2FdO_S-DJ7-sMiIkIAU0MJuw7GkCqngJRm-D_ZfkrMrgrDkjI0/s1600/emily+and+claire.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" i$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_dJACxpz2cuQPXh44lyKDSHmx4ajeg5yM7ZXImbxraWwbrCIaiB9iQmZ_nNub2AWjQ3or29lDl47-ZuBSKzmmdD9kjq2FdO_S-DJ7-sMiIkIAU0MJuw7GkCqngJRm-D_ZfkrMrgrDkjI0/s320/emily+and+claire.jpg" width="320" /></a></div><br />
<div style="text-align: justify;">Dr. Evans also said that as the area heals, it will actually get MORE itchy before it subsides, kind of like how a scar itches when it's healing. He was right, and I did have more itchiness in the week following my last day, but it seems to have subsided now. The area is a little dark (which he also told me to expect) and you can actually see a couple lines on my skin dividing the treated area from the untreated area - kind of looks like a tan line.</div><div style="text-align: justify;"><a name='more'></a><br />
</div><div style="text-align: justify;">Of course, even though I've talked a lot about treatment ending, I really mean that "principal" treament has ended - which means that I'm finally done with the "big three" treatments - chemo, surgery and radiation. I still go for Herceptin every three weeks; I will still have MUGA scans and PET/CT scans every few months; and sometime in the fall I will have more reconstructive surgery (to replace the tissue expander I have had for almost exactly one year with a real implant). I need to wait at least three months after radiation is finished before I can have my swap-out surgery though. And, I will start on Tamoxifen, which I can now start taking since radiation has ended.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">At my Herceptin treatment this past week, Dr. Sara was on vacation but I saw Eugenie, his nurse practitioner, who wrote me a prescription for Tamoxifen. I have always known Tamoxifen would be the next step in my treatment, since my cancer is hormone receptive. It is a pill that I will need to take every day for five years, and it helps reduce the risk of a recurrence. I read somewhere once that it can reduce the risk of a recurrence by 50 percent. Of course I can't remember where I read that so I don't know if it's really accurate, but that is pretty good if it is!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Of course as with any drug there are side effects, the most common of which being hot flashes. But not everyone gets them and of those who do, most often it is only temporary, i.e. you may get them for the first couple months but then they dissipate. I've been pretty lucky with side effects so far, so we'll see if my luck continues. And if not, well there are worse things than having a few hot flashes at the age of 33, and I'm willing to go through that if it's going to keep that pesky cancer away.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">So now, I am enjoying a couple weeks "off" from treatment! It is nice to not have to go to the hospital EVERY DAY and it was nice last week when I was able to "sleep in" and actually go straight to work in the morning instead of going to the hospital first. I even have a couple business trips coming up to Maine and New Hampshire, which is nice since I haven't been able to travel for the last 6 weeks or so due to treatment. And at the end of July, I'll be taking a few days off to spend at the shore with my family (including Claire!).</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">The next big news will be my next round of tests, which should be coming up in August. Until then, I hope everyone enjoys the summer! And thanks all once again for all of your support - the last year and a half would have been a LOT more difficult without you. :)</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-702274453081078874.post-55989450224155118172011-06-05T13:35:00.002-04:002011-06-05T13:37:09.109-04:00Radiation<div style="text-align: justify;">When last we left off, I had just had my radiation planning session and was waiting to be called for radiation to start. Turns out, that took a lot longer than expected - 4 weeks to be exact! When I finally went in to start radiation, Dr. Evans said that my planning was a little "complicated" because of the radiation I had already had to my spine, which caused a delay. I guess they had one plan set and then revised it. Well, I guess I'd rather have it right than rushed!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I started by going in after work the day before treatment would start, so they could take some scans. This was pretty quick and I was in and out in about 30 minutes. However, they weren't able to get all the scans they needed because one of the machines was being a little wonky, so they told me they'd get the rest of the scans the next morning when I came in for my first treatment.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">My first actual treatment day was Tuesday, May 17th. I went in for the first of my daily appointments at 8:45am (originally they wanted to schedule me for a daily 7:15am appointment - eeks! Luckily that idea was squashed because there was no way I'd be able to wake up in the 5's every day and then make it through a whole day of work without turning into a zombie).</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I knew it would be a little bit of a longer appointment because of the scans they couldn't get the day before, but I figured that the first set of scans were pretty quick and I knew treatment itself wouldn't take long, so I didn't think it would take long enough to start bothering me.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Um, I was very wrong on that account. I ended up having to be on the table - in the same position with my right arm over my head and strict instructions not to move - for about an hour and 15 minutes. I didn't really have any sense of time since there was not a clock in my sightline but I can say that at least midway through it started to get pretty torturous.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">It doesn't sound like it would be so bad - after all, you are lying down the whole time. But you try lying down with your arm over your head and see how long you can stay in the same exact position without moving before your arm falls asleep, then becomes really sore, and then you start thinking that you are never going to be allowed to move again - ever. Basically, it sucks. I'm not ashamed to admit that there may have been a couple tears by the end of it.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">The radiation techs kept apologizing and saying they they knew I'd been there for a long time, that the first day is always the longest and it wouldn't be like this every day, and they kept me informed on how things were going. After they took my scans, the doctor had to review them. After he reviewed my scans, there was one thing he wanted Physics to double-check, so we had to wait for them to review my scans. Once that happened, THEN I had to be treated. So all of this took a lot longer then I think anyone expected. </div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Once the radiation techs get you into position, they don't want you to move because if you do then they have to reposition you. So while I don't blame anyone for the unpleasantness, I do think it would have been the lesser of two evils (for me at least) if they'd allowed me to relax (and move!) while we were waiting for the doctor and physics to review my scans, and then reposition me before treatment. But that is just my two cents.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I had flashbacks to my first spine radiation treatment, which was also over an hour and pretty unpleasant after awhile. After that treatment, the nurse practitioner gave me a prescription for Ativan (kind of like a Xanax) to relax me before treatment, which helped a LOT for my second spine radiation treatment. If I had known how long the scans + treatment would have taken, I'd have taken one! Of course, hindsight is always 20/20. And going to work afterwards would have been pretty interesting.</div><div style="text-align: justify;"><a name='more'></a><br />
</div><div style="text-align: justify;">Luckily the techs were right when they kept telling me that the first day would be the longest, and it wouldn't always be like that. My treatments are now much more routine. I arrive at 8:45am (or usually a little early - very surprising for a non-morning person like myself). I say hello to the nurses who check me in, then I head to one of the changing rooms to put on a gown (luckily I only have to change from the waist up). Then I wait to be called - usually I don't have to wait long, which is good. I head into the radiation room and climb up on to the table, and lay back into the mold they made during my planning session in April. The techs take a few minutes to get me into position, and then treatment starts. Once it starts it takes only about 10 minutes or so. The machines move around me and when the radiation is actually flowing (I'm not sure if radiation really "flows" but I don't know how else to describe it) a light goes on and there is a buzzing sound, usually for no more than 10 seconds or so. Once I'm done I head back to the changing rooms, change out of my gown and then I am on my way to work!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">On my first day the nurses talked to me about what to expect. Of course, I was already well aware of the side effects since my Mom just completed radiation treatment. The main side effects are fatigue, which the nurse told me usually starts after the second week, and skin irritation (redness, etc.). She told me to buy some Aquaphor and put it on the area being treated at least once a day to keep it moist. I am only allowed to use Dove unscented soap on the area, and I'm not supposed to apply any other lotions or creams except for the Aquaphor, since they can irritate the area.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">When my Mom was in treatment, her nurses were very adamant that she could only use Tom's of Maine deoderant since it did not contain aluminum, like most traditional deoderants do. The nurse didn't tell me this, so I asked - she said that a study just came out saying this might not be really necessary but just to be safe it's probably a good idea just to go with the Tom's on that side. I've been following this advice. Let's just say that I will be glad when I can switch back to my regular deoderant and if you happen to be hanging out with me on a hot day you may want to stay on my left side (I am sticking to my Lady Speed Stick on my non-treated side!). :)</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I've been following all the advice - dutifully applying my Aquaphor (which is kind of like Vaseline) every night and washing with Dove unscented soap every morning before treatment. So far, I have no side effects to speak of.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I do have to wake up 45 minutes earlier than I usually do every day for treatment, and yes, as expected I do get tired earlier at night. But I think this is more due to my earlier wake-up time, and not really from treatment itself - I guess it would be hard to tell! </div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I see Dr. Evans every Monday, and so far he said I'm doing very well and things all look good. Every so often the techs take scans just to make sure everything is still lining up, and luckily those have not taken too long and everything has turned out just as they expected.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I will have a total of 28 treatments - about 6 weeks (I don't go on weekends or holidays like Memorial Day). Tomorrow (Monday) marks my 14th treatment and therefore my halfway point. As long as everything goes according to plan, my last treatment will be on June 24th. Of course, if I can't be treated for one reason or another (most likely because the machine could go down - which happened to both my parents twice when they were going through radiation), then that could be extended a couple days.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I am still getting my Herceptin treatments every three weeks, and I had a MUGA scan a couple weeks ago just to make sure my heart is still looking good. I passed with flying colors!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">In other news, back on April 29th, I attended the Helping Hand Fund Comedy Night charity fundraiser as the "Guest of Honor" in my hometown. I've mentioned the Helping Hand Fund before - it it an organization that provides wigs to cancer patients who either do not have insurance or whose insurance does not cover wigs for hair loss. It was started by Victor Migliarese, a friend of my Dad's who also gave me an "emergency" haircut when my hair started rapidly falling out last year due to my chemo treatments, and my regular stylist was out of town.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">The night was a great success with a sellout crowd of over 300 people attending. My family had a big table right in the front, since we had a total of 27 people in our group! I was so touched to see so many people come out to support me and see me speak. Yes, you heard that right - Victor gave me the option of speaking - only if I wanted to - and since I don't usually get TOO nervous about public speaking, I agreed.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Of course, I didn't know there were 300 people in the audience until just before I arrived, but it was fine. I just said a few words about how important all the support I've recieved since my diagnosis has been to me, and what a great organization the Helping Hand Fund is.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Here's a picture of me with the program:</div><div style="text-align: justify;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkoiDA7oHKAexm1NOrHYA7078C8t-KLheJvIO4qX5hLXxK8VeO2a-dzBCDqqplvimaaOAQkM-3Hp3zLAdLCyW4uUs3Py1gPVqzV55rkRYH9vHxZ__C6yEopcWuU9X3Tsrv1GSbMwanRfNI/s1600/Guest+of+Honor.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkoiDA7oHKAexm1NOrHYA7078C8t-KLheJvIO4qX5hLXxK8VeO2a-dzBCDqqplvimaaOAQkM-3Hp3zLAdLCyW4uUs3Py1gPVqzV55rkRYH9vHxZ__C6yEopcWuU9X3Tsrv1GSbMwanRfNI/s320/Guest+of+Honor.jpg" t8="true" width="320" /></a></div><br />
<div style="text-align: justify;">After my "speech" it was on to the fun stuff - a nice Italian dinner and then three (hilarious) comedy acts. Several people - many of them survivors themselves - came up to me to say hello and introduce themselves, which was really great.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">All in all it was a wonderful night for a great cause!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">And finally, my sister and several of her friends did the Race for the Cure yesterday in Washington, DC, as part of the Emily's Entourage+ team. The "+" is for my Mom and everyone else who has also had to battle this disease.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Here's a picture of my niece Claire at the race (she learned to walk just in time!):</div><div style="text-align: justify;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjATV7c5aCuZHmwywbHHsPlB9XgqcGy5sEJGFLhZUbv529FVRJghQ0pA-z6hzLaQAB1pS4QDV2-qF5Hy6LbZEl6Mr5NmSO4zLIHOWwvD8ugnA9igoQ4qmGIeEeBIy9NJ0uDpFJOLtvADGDj/s1600/Claire+Race+for+the+Cure.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjATV7c5aCuZHmwywbHHsPlB9XgqcGy5sEJGFLhZUbv529FVRJghQ0pA-z6hzLaQAB1pS4QDV2-qF5Hy6LbZEl6Mr5NmSO4zLIHOWwvD8ugnA9igoQ4qmGIeEeBIy9NJ0uDpFJOLtvADGDj/s320/Claire+Race+for+the+Cure.jpg" t8="true" width="240" /></a></div><div align="justify" style="text-align: justify;"><br />
</div><div align="justify" style="text-align: justify;">Check out what her T-shirt says (in case it's too small to read, it says "Find a Cure Before I Grow Boobs") - too cute!</div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-702274453081078874.post-67459865291677912582011-04-17T20:09:00.000-04:002011-04-17T20:09:28.542-04:00The "Results Show": All Clear!<div align="justify">Well, as the title of this blog post suggests, my scans were ALL CLEAR! This means there is currently no evidence of cancer in my body - WOOHOO!</div><div align="justify"><br />
</div><div align="justify">This moment has been a long time coming. It's the first time since my diagnosis 15 months ago that I've been able to say - with documented medical tests to back me up - that there is no active cancer!</div><div align="justify"><br />
</div><div align="justify">And while these results were what we expected and I tried not to worry too much about my test results, it obviously came as a huge relief nevertheless.</div><div align="justify"><br />
</div><div align="justify">The tests themselves went fine on Tuesday - I know the drill by now so it was the same low-carb diet on Monday, then I got to the testing place bright and early at 8:45am on Tuesday morning. First up was three spine MRIs - thoracic, cervical and lumbar. They were all separate tests - about 20 minutes each - and luckily they wheeled me out of the machine in between so I could move around a little before going back in.</div><div align="justify"><br />
</div><div align="justify">Then I moved on to the PET/CT scan. I had dutifully followed my low-carb diet the day before, and as usual they put in an IV first (this had to go in my arm because the contrast is made of glucose so can clog the port), then gave me my oral contrast "milkshake" (I chose vanilla this time), then I sat in a little room for about an hour. I snapped this pic of the sign on the door:</div><div align="justify"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8My2cmn-6p0SoJ-ryBavCvAyygEsaEHxuUyaMUIZypoHcxvDW3725FTxCLtBNbltfVBvPBb8mAgKGAb04AFja9ubbw77yHlSO_uLe_yJuG3-P0vuGi2SeUQ84m_WKt9xfN0xl9Cr-GP8n/s1600/2011-04-12+11.36.47.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8My2cmn-6p0SoJ-ryBavCvAyygEsaEHxuUyaMUIZypoHcxvDW3725FTxCLtBNbltfVBvPBb8mAgKGAb04AFja9ubbw77yHlSO_uLe_yJuG3-P0vuGi2SeUQ84m_WKt9xfN0xl9Cr-GP8n/s320/2011-04-12+11.36.47.jpg" width="320" /></a></div><br />
<div style="text-align: justify;">Inviting, isn't it?</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Then I was called in to the scanning room where I was belted on to the table, injected with the CT contrast, and then into the scan machine for about 30 minutes. I think I dozed off at one point - again! There's something about that PET/CT machine that makes me sleepy. I guess I would feel the same about the MRI machine if there wasn't all that loud clanging going on during that test.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I was done around 1:30pm and then had to head over to the hospital to get blood drawn in advance of my radiation planning session on Friday. A busy day, but it was relatively uneventful and smooth.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">On Wednesday, I went to see Dr. Sara for my test results. He told me they were all clear - there was nothing in the breast, nothing in the liver, nothing in the spine (the two healed spots we already knew about were unchanged). He said there was really not much to talk about since it was all clear! My next set of tests will be in about 4 months - in August.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">It's important to note that although a clear scan is amazing news, it doesn't necessarily mean that every last cancer cell has been eradicated from my body. There is no way of knowing that - well, I guess unless the cancer either comes back or it doesn't. I will always be at risk of a recurrence for the rest of my life and no one will ever be able to tell me that I never have to worry about the cancer coming back, becuase there is always that risk. But, that is why I will have scans every four months or so at least to start, so that if there ever is evidence of a recurrence it can hopefully be caught early and nipped in the bud.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Here's a picture of Dr. Sara and me right after he told me the good news:</div><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2NxWa2PIcRq8T5QDwl8sVHqh_3iNsVKY98AkZziePZqjAsOTHt_oTzY-ptIjGNSjkwv7LvMBjmKCpd_CzsbD7S7k34bV5FKNeLsUANHWyakM5FbyXPWY5NRxPWRBvHUP6Mm5PuzjLSuCh/s1600/2011-04-13+15.02.02.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2NxWa2PIcRq8T5QDwl8sVHqh_3iNsVKY98AkZziePZqjAsOTHt_oTzY-ptIjGNSjkwv7LvMBjmKCpd_CzsbD7S7k34bV5FKNeLsUANHWyakM5FbyXPWY5NRxPWRBvHUP6Mm5PuzjLSuCh/s320/2011-04-13+15.02.02.jpg" width="320" /></a></div><br />
<div style="text-align: justify;">Treatment has not changed - Herceptin every three weeks and of course radiation will be starting soon. I also saw Dr. Rosenbaum Smith this week for my regular follow-up and everything was AOK there too! My next breast checkup will be in July.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">On Friday I went to my radiation "planning" session. I have been through this before with my spine radiation so I pretty much knew what to expect. My friend Kim was able to come with me to this appointment and they even let her come back to the CT room while they got things started, so she served as resident photographer.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Here's a picture of the CT machine:</div><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi49YejwEuFZU14jCpZBf6SZBc_QhnXjfkIFoDi3a510m9PBVJVoZnTGO_hXZWfoReoaoqOmHKGPe6oh5jylP14ig3c2oNhQ0gIvRz3i0VbxwKd15OQoP2lnH_Cf2Uee4gb2Y3k_JrP9R5L/s1600/2011-04-15+14.11.19.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi49YejwEuFZU14jCpZBf6SZBc_QhnXjfkIFoDi3a510m9PBVJVoZnTGO_hXZWfoReoaoqOmHKGPe6oh5jylP14ig3c2oNhQ0gIvRz3i0VbxwKd15OQoP2lnH_Cf2Uee4gb2Y3k_JrP9R5L/s320/2011-04-15+14.11.19.jpg" width="320" /></a></div><br />
And here's a pic of my feet on the scanning table. Aren't my shoes cute? I try to go to my cancer treatments in style!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-_cyrHlPjRIvVLL377z7x-YsCQtMLLCmgRMbfO0NQVjVbRmqN5z4fBoa_VuR_QWUfagebCwNOTsu2EzqjmAM5LeCbDEQIfVu2CEfTJgd_A_rsnSSH4cLzzsf74q5lv0sboT31oR6mYcea/s1600/2011-04-15+14.17.15.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-_cyrHlPjRIvVLL377z7x-YsCQtMLLCmgRMbfO0NQVjVbRmqN5z4fBoa_VuR_QWUfagebCwNOTsu2EzqjmAM5LeCbDEQIfVu2CEfTJgd_A_rsnSSH4cLzzsf74q5lv0sboT31oR6mYcea/s320/2011-04-15+14.17.15.jpg" width="320" /></a></div><br />
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<div style="text-align: justify;">First the tech explained what would happen - first they would get me into the right position and make a mold (that blue thing in the first pic is what eventually became the mold) that I would lie in each time to be sure I'm in the same exact position for each session. I wondered if they could use the mold I had last time but the answer was no - and in fact they use a different kind of mold for the breast radiation than they did for the spine radiation for some reason.</div><div align="justify"></div><div style="text-align: justify;">After the mold was made and I was in position, they would do the CT scan, and then they would do some planning and finally I would get my new tattoos and be on my way.</div><br />
It all went as planned and took a little over an hour all together - not too bad. I had to lie with my right arm above my head and it started to hurt after awhile. When I was finally able to move it my arm had totally fallen asleep and I couldn't feel it at all - it kind of flopped off to the side. Such a weird feeling! But then it quickly came back to life. <br />
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I also saw Dr. Evans who told me again how all my scans were clear and the results were the "best possible outcome". Even though I already knew the results, I never get tired of hearing them!<br />
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They were able to use some of my existing tattoos so I only had to get four new ones, which was nice. Now I have a total of 11 tiny blue dot tattoos. Or as I say, they are all of the "world as seen from space" (a reference to an old Friends episode)!<br />
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Radiation should start in 1-2 weeks - they will call me when the planning is done and they're ready for me to come in. I will have to go every day, but it will be a short treatment - just a few minutes hopefully. I will see Dr. Evans once a week - on Mondays.<br />
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I know the radiation drill already because Mom is still going through her radiation treatment, but should finish on Friday!<br />
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<div style="text-align: justify;">Now, I have a week "off" from treatment before my next Herceptin on April 27th and as I wait for radiation to start. I think I'll just revel in my clear scan results until then!</div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-702274453081078874.post-59134579490518623592011-04-10T17:33:00.000-04:002011-04-10T17:33:50.482-04:00Sad/Happy<div style="text-align: justify;">This blog post starts off on a somber note. On March 29th, my Uncle Bob passed away of cancer at the age of 59. He was diagnosed with cancer of the bile ducts in late January. A mere two months later, he was gone. He is missed by his many friends and family.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Besides being yet another blow - the worst one yet over the last year - to my family, it was also a stark reminder of how cruel, ruthless and unforgiving this disease can be.<br />
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Besides being sad for the loss of my uncle, and for my Dad, who lost his younger brother, inevitably it also makes me think about my own cancer diagnosis. And while there may have been a shred of comfort in the fact that my uncle had a very rare kind of cancer that I do not have; cancer is still cancer. <br />
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And then two days later I found out that the woman who runs the community programs at my breast surgeon's office passed away of breast cancer. So there goes that shred of comfort.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">As evidenced by my last few blog posts, I've been doing fine over the last few months with no side effects to speak of. In a lot of ways, I live my normal life, with just a few more doctor's appointments and treatments than my fellow 32-year-olds. And while the fact that I have cancer is always with me - always there when I wake up in the morning and constantly in my thoughts - I've learned to live with it.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">But then something like two cancer deaths in one week kind of throws you for a loop and reminds you that this cancer thing is SERIOUS BUSINESS. It really sucks, to put it bluntly.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">In other news, on March 23rd I had my last chemo treatment, i.e. my last Navelbine treatment. I didn't even know until I showed up that day that it would be my last Navelbine, but Dr. Sara said that it had been six months, and so he was taking me off the chemo drug.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">However, I will stay on Herceptin for another 6 months, maybe more. As he's said before, my case does not fit into any of the "neat categories" of cancer diagnoses. Typically, when someone is diagnosed with Her-2 positive cancer, they are on Herceptin for one year. The reason for the "one year" is simply because that's the length of time they have research on. It could be that less than one year provides the same effectiveness; it could be that more than 1 year provides longer-term effectiveness. We simply don't know because the drug hasn't been around 25, 30 years to know the long-term benefits.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Now, in cases where patients have active metastatic disease (i.e. the cancer has spread to other parts of the body and is still active in those other parts), their Herceptin treatment is determined by how the active tumors are responding. If they keep shrinking on the Herceptin, they stay on it; if not, they may be taken off the drug.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Of course, MUGA scans are the other determining factor in treatment length, as someone whose heart muscle is being weakened by the drug will be taken off it, at least temporarily until heart strength is regained.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">However, I don't fit into any of these categories. Yes, I have metastatic disease, but it's not active (at least we don't think it is... more on that later). So what to do?</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Well, Dr. Sara says that there is really no reason to take me off the Herceptin. It's a relatively quick treatment and doesn't have any side effects (except for the heart muscle thing which has not affected me), so why not keep me on it?</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">My response to this is: Fine by me! I will gladly get Herceptin for the rest of my life if there's even a shred of a chance it's keeping me from a recurrence.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">So, now that my chemo is complete, this means it's time for another PET/CT scan. Although all evidence of "active cancer" has presumably been eradicated from my body - the active cancer in my breast, lymph nodes and liver removed by surgery; the active cancer in my spine already showing as healed when it was discovered, and then also treated with some "insurance" radiation - we won't really know how things look until my next scan.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">It's not my liver or spine that Dr. Sara is necessarily worried about... it's the fact that I had 8 out of 11 lymph nodes still affected after surgery. This tells him that my cancer is a cancer that likes to move. So the danger is not necessarily that it will start growing again in places where it's already "landed," but that it will show up in new places.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">My scans are set for this Tuesday, and I will get the results the next day, on Wednesday.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I am pretty optimistic that my scans will be clear, but I also remember that last time my results suprised us all when those two little spots on my spine were discovered. So you never know.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Now, besides getting scanned again, the end of chemo also means the beginning of radiation. This Friday, I will be going for my radiation "planning" session, where I will be getting more tattoos and will find out more about this next stage of treatment.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">As part of my "day of tests" on Tuesday, I will also be getting an MRI of my spine as a follow-up to my spine radiation last fall, so hopefully it will show what we expect - that the combination of chemo and spine radiation has fully healed those two little spots on my backbone.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">On top of all of this, it's also time for my 3-month checkup with Dr. Rosenbaum Smith, which is also set for Wednesday, just before my "results show" appointment with Dr. Sara.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Whew - it will be a busy week!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">OK, time for some comic relief. First, as you may remember my friend Amanda's comment over a year ago about how many Mardi Gras beads she will need to give me thanks to all of my "boob flashes" inspired my little sidebar tallying both the boob flashes and needle sticks.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Well, true to her word, sure enough a couple weeks ago she presented me with a string of beads for every boob flash I've had over the last year - 112. In case you're wondering, here's what 112 Mardi Gras beads look like!</div><div style="text-align: justify;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgY_mXCflc_xMvtxk4p__nXo6OKKhh6OGuoVtEnV1uPxiOfwRG__ZeEm7uTl00ZmIFcaEBiPsmn90GnGJn0mhd1-n7siPq4u0L_AXE9maeeUU_aJhUeHQpFABusZ7OGx0AknjMkYQsFfpA/s1600/DSC00861.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgY_mXCflc_xMvtxk4p__nXo6OKKhh6OGuoVtEnV1uPxiOfwRG__ZeEm7uTl00ZmIFcaEBiPsmn90GnGJn0mhd1-n7siPq4u0L_AXE9maeeUU_aJhUeHQpFABusZ7OGx0AknjMkYQsFfpA/s320/DSC00861.JPG" width="320" /></a></div><br />
Haha - thank you Amanda!<br />
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Now, secondly, while this is totally not cancer-related in the least, last Saturday, April 2nd was my niece Claire's 1st birthday!<br />
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Here is a picture of Claire and me on her big day:<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1F2kt6ChTj4QkJ4YQ_fevF_IpVjy-HJQHj4mKjBSXm3N0yUMxnsls8IPuGzYDK5AVADBijOQVggA9xLROhKPegK-CT2SjVS1zN7JLu8AA4ugWpTPLdMx7H4Z-0P-1dPb65VuMYuI7Nbft/s1600/DSC02890.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1F2kt6ChTj4QkJ4YQ_fevF_IpVjy-HJQHj4mKjBSXm3N0yUMxnsls8IPuGzYDK5AVADBijOQVggA9xLROhKPegK-CT2SjVS1zN7JLu8AA4ugWpTPLdMx7H4Z-0P-1dPb65VuMYuI7Nbft/s320/DSC02890.JPG" width="320" /></a></div><br />
And here's another picture of Claire in her party dress:<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1qCg-r8zto1Gc3ntbUsIO1Fi8FkvCDBpDrjvhxbDuPoH7d9jWRCbbtxgf1ykR-X2QGsOZ-LWmV_qQPrQvdqTgYbgX5YipFMVeXPk5GbX0X-zdYYEg4nJ-HT5TmJgwpt36qE2Z6CYW8Kc-/s1600/DSC01980.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1qCg-r8zto1Gc3ntbUsIO1Fi8FkvCDBpDrjvhxbDuPoH7d9jWRCbbtxgf1ykR-X2QGsOZ-LWmV_qQPrQvdqTgYbgX5YipFMVeXPk5GbX0X-zdYYEg4nJ-HT5TmJgwpt36qE2Z6CYW8Kc-/s320/DSC01980.JPG" width="240" /></a></div><br />
I think my sister Sara put it perfectly when she said that Claire is "our sunbeam in this cloudy, cloudy world." <br />
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Happy Birthday to sweet Claire!<br />
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</div>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-702274453081078874.post-2109849038271719372011-03-13T21:11:00.000-04:002011-03-13T21:11:13.879-04:00Keep on Keeping on...<div style="text-align: justify;">Things are still going smoothly with treatment - with just about one more month of chemo to go, I STILL have no side effects and still feel perfectly fine.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">In fact, a few weeks ago I finally mustered the courage to go back to the gym. It was not nearly as scary as I thought it might be. My two favorite forms of exercise are running and kickboxing (I belong to a kickboxing gym), and to get back into shape I decided to start with running. I didn't know exactly what to expect since it had been about year since I'd done any kind of exercising to speak of.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">So, even though in the past the minimum run I would do would be about 3 miles, this time I told myself to try to make it to just 20 minutes, and to go as slow as I needed to. I made it to 20 minutes, and it felt great. It wasn't nearly as hard as I thought it would be, and it felt really good to be running again.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">The next hurdle will be taking a kickboxing class - they are pretty intense so I'm going to give myself a little more time on the treadmill to build up my stamina, but I'm looking forward to the day when I can get back to the bag. I can see myself picturing the word "cancer" on the punching bag and I think that will give me the motivation I need to hit as hard as I can!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">A couple weeks ago I had a routine MUGA scan - this is the test that measures the strength of my heart muscle, to ensure that the Herceptin is not negatively affecting my heart (since weakening the heart muscle is a side effect of the drug). The test went the same as always. My techician was Igor, who when he introduced himself said, "My name is Igor - it sounds scary but really I'm a nice guy" - ha!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">For some reason for this test he could not use my port, so he drew blood from my arm. Then, I waited about 45 minutes while my blood was being treated with some kind of radioactive substance, and then the blood was put back in me and I was under the scanning machine for about 30 minutes.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I got the results the following week when I saw Dr. Sara, and they were just fine. He said my MUGA result was a 68 - meaning my heart pumps 68% of the blood up into the aorta. Anything greater than 50 is normal, so that is good! Not that I was worried. Especially after I'd started running and didn't feel abnormally winded or anything I figured my heart was working just fine.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Mom has been doing well in her fight too. She started radiation last week, and now goes every morning. The treatment itself takes only 6 minutes. Before she started Dr. Sara reminded her that radiation can cause fatigue and to take it easy if she starts feeling more tired than usual. He said not to use me as an example of side effects since I am the exception to the rule when it comes to side effects these days!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">So, as I said I have about another month to go on this chemo. Let's hope my streak of no side effects keeps up. I have also been lucky enough to have not gotten sick - meaning no flu, no stomach virus, not even a cold - since my diagnosis, despite the fact that chemo makes you more susceptible to infection. So here's hoping I can keep that streak going too!</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-702274453081078874.post-71898747812819335002011-02-13T21:43:00.000-05:002011-02-13T21:43:01.124-05:00Status Quo<div style="text-align: justify;">Ok it's been awhile since my last post but I have a good reason... I was on vacation! (Well, not for the whole time - only for a week, but still.) I went to the Caribbean, where it was sunny and warm and where there was NO SNOW! Here is picture of me in St. Lucia:</div><div style="text-align: justify;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzBtQEy3eAJURziuKpxd8n2IehnT2DwWAicQRrJKvc-Hw7-_BgMSnX-dKqrnKtCcEq-0iufQG2JTypx3ty5yKeRTqcWJX70YkQoKgr4Z3kJ96OdU2jv-WF7IvFR_Fkm-jL_xYL2oofuTQK/s1600/DSC00705.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" h5="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzBtQEy3eAJURziuKpxd8n2IehnT2DwWAicQRrJKvc-Hw7-_BgMSnX-dKqrnKtCcEq-0iufQG2JTypx3ty5yKeRTqcWJX70YkQoKgr4Z3kJ96OdU2jv-WF7IvFR_Fkm-jL_xYL2oofuTQK/s320/DSC00705.JPG" width="320" /></a></div><br />
It was really nice to just relax for a week and soak up the sun (of course I was very diligent about putting lots of suncreen on my scars). But all good things must come to an end so after my week it was back to reality...<br />
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<div style="text-align: justify;">Luckily things are still status quo with my treatment. After four months of chemo, I have still not experienced any side effects - my blood counts have been good every week and I don't have any of the numbness or tingling in my fingers or toes which is a common side effect of the drug I am on. Dr. Sara said that he tends to prescribe Navelbine (my current chemo drug) a lot - more than his colleagues - and he's very pleased that I haven't had any side effects and that we haven't had to pause treatment even once to wait for my counts to come back - especially since I am getting a full dose; no baby chemo doses here!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I also passed the one-year mark of the day that I was diagnosed: January 14th. Coincidentally, I spent part of the day getting a mammogram, as it was time for my yearly screening and my 3-month checkup with Dr. Rosenbaum Smith. The mammogram was only of the left side, since you can't mammo a tissue expander, which I of course still have on the right side. My mammo was 100% clean, so that was great to hear! Dr. Rosenbaum Smith said everything looks good. I will go back in 3 months for my next checkup.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">My Mom and I actually had mother-daughter breast surgeon appointments that day since she had her follow-up with Dr. Rosenbaum Smith too. Things are going well with her treatment as well - she did have to go in for a follow-up surgery because the pathology results from the first surgery showed a margin that was a little too close for comfort. But the second surgery went smoothly and the margins were clean. Now she is waiting a few weeks for it to heal completely before starting radiation.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I also had a follow-up appointment with Dr. Evans, my radiation oncologist, this week. He said that everything looks good, and that it is time for me to have a PET/CT and MRI of the spine soon, as a follow-up to the radiation I had in September. I did have a bone scan back in December that was clean, but since it was the PET/CT that first detected the spots on my spine, that test should be even more definitive. Since I still have 2 more months of chemo, I will have the tests after my last treatment in order to get the best and most accurate result.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I am still on schedule to have radiation to the breast after chemo, and Dr. Evans said that I will need to wait 4-6 weeks after my last chemo treatment before my first radiation treatment can begin. This is just to make sure that all of the chemo is out of my system. So, it's looking like radiation won't start until the end of May/beginning of June, and will last for 6-7 weeks. Then, I will have to wait about 3 months for the area to fully heal before I can have my follow-up reconstructive surgery to get the tissue expander removed and the implant put in.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">So I still have several months of treatment ahead of me, followed by more reconstruction, but things are going well and I can't really ask for more than that!</div><div style="text-align: justify;"><br />
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</div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-702274453081078874.post-40065184120597029062011-01-10T21:33:00.001-05:002011-01-10T21:36:30.370-05:00Really, World?<div style="text-align: justify;">This world is unpredictable. No one can argue that. Almost one year ago, I could never have predicted that at the age of 31 I would be diagnosed with advanced breast cancer and spend a good chunk of 2010 in various doctors' offices, in the infusion suite, in hospital beds recovering from not one but two surgeries, and even a stint on the radiation table.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">But even after all of that happened, still, I couldn't predict what would come next: my Mom was diagnosed with breast cancer too. I'll give you a second to let that sink in.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Are you back? OK, good. Yes of course I am totally serious because who in their right mind would joke about a thing like this.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">The good news is that thanks to regular mammograms, it was caught super early (stage 1) and her prognosis is very, very good. The "suspicious tissue" was found on her annual routine mammogram and she was advised to get a sonogram for further testing. The sonogram results led the docs to advise a biopsy, and that is when she called Dr. Rosenbaum Smith's office.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">She got in right away and Dr. RS was even able to arrange for her biopsy to take place that afternoon right after her appointment. Results came back two days later: cancer. I was actually walking out of the hospital after my own chemo treatment when I called my Mom to tell her how it went (fine, as always) and that's when she told me. It was two days before Christmas, which also happens to be my Mom's birthday.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Less than two weeks later, she had an out-patient lumpectomy which went very well. Her lymph nodes were removed and examined and initial tests showed no signs of cancer (i.e. no signs that it had spread beyond the breast). Next step: radiation. She will probably be done with her radiation before I even start mine!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Of course, it came as a shock to our family, but knowing it was caught so early (her spot was 4mm, vs. the 5cm+ mine was) and that she had a tried and tested team behind her made the blow a little easier to take.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Also, Dr. RS does not think that our cases are related at all - she thinks we are just having a crappy year. Remember, only 7-10% of all cancers are hereditary, which means 90% or more are totally random. If I had tested positive for one of the known breast cancer genes, then of course it might be hereditary, but I didn't. Of course, as we've known all along there's a chance that we have some breast cancer gene that hasn't been discovered yet, but there's obviously no way to know that now.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">It's funny, but I think that my Mom being diagnosed would have been a lot scarier if I hadn't gone through what I have this past year. For one, we all know a whole hell of a lot more about breast cancer than we did a year ago, so we all came to it with a base of knowledge. Secondly, as I said, there was none of the stress about which doctor to call and where she would get treated - we knew exactly who to call. I've said it before but it bears repeating: I feel so lucky that I have the medical team behind me that I do, and that I'm being treated in a "one stop shop" place so my doctors all communicate with each other and know the latest on my case before I even see them.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">In fact, when I saw Dr. Sara a week after my Mom's diagnosis, he already knew. He was very reassuring and even praised the radiologist who caught it on the mammogram, since he said something that small is easy to miss. My Mom actually has an appointment with him next week, since she will probalby need to go on a drug post-treatment to help prevent a recurrence (and also to verify the no-chemo recommendation once we get all test results back from her surgery).</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Luckily, this news didn't put too much of a damper on the holiday, and we had a great Christmas with 9-month old Claire. Here's a picture of me, my Mom and Claire on Christmas Day:</div><div style="text-align: justify;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinHtTPDl7fqZ8_yvtXyj0d-zAAIiMPQbajx7UFbdRHewGaMCcmc0vtKio7pJKNOTl1cO7tau3XGmRmnzErH-MHiNVsbv8v1OvNohG6-31YJlVso7VIa8JLOOo4NdGfTl17lphyphenhyphenp7ZECoer/s1600/2010-12-25+19.26.00.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinHtTPDl7fqZ8_yvtXyj0d-zAAIiMPQbajx7UFbdRHewGaMCcmc0vtKio7pJKNOTl1cO7tau3XGmRmnzErH-MHiNVsbv8v1OvNohG6-31YJlVso7VIa8JLOOo4NdGfTl17lphyphenhyphenp7ZECoer/s320/2010-12-25+19.26.00.jpg" width="320" /></a></div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Meanwhile, my treatment is going great. At my last appointment, Dr. Sara said he is really very pleased that three months in (about halfway through chemo), I STILL have no side effects - no neuropathy, no nothing. He is also very pleased that my blood counts have remained good, so we haven't had to have any breaks in treatment to let my counts return to normal.</div><div style="text-align: justify;"><a name='more'></a><br />
</div><div style="text-align: justify;">Dr. Sara said that he is a big fan of the Navelbine, and that he probably prescribes it more often than his colleagues. And he can't remember a patient that has tolerated it for as long as I have - with the full dose that I am getting - with no trace of side effects. Well, I am an overacheiver, what can I say?!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Of course, I know that this doesn't mean that I won't develop side effects as I continue my treatment. For all I know I could wake up tomorrow with numbness and tingling in my fingers and toes, or my blood test at Wednesday's chemo appt. could show the drug affecting my counts. But I'm enjoying the no-side-effects while I can!</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">This week I have chemo as per usual on Wednesday, and then Friday I have a mammogram and appointment with Dr. Rosenbaum Smith. Mom and I actually have mother-daughter breast surgeon appointments that day. As my sister said, "It's kind of cute in a sad, cruel twist of fate kind of way."</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Friday has another significance: it's my one-year "cancerversary". Now, there is some debate as to what a "cancerversary" actually is, with some people saying it's the anniversary of your diagnosis date, while others contend it's the day you complete treatment and/or are declared cancer-free. I haven't gotten to those last two yet, so for now, it's my diagnosis date.</div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I've been thinking about it a lot - I guess it's only natural to reflect on the past year as we embark on the next. Sometimes I feel like it was only yesterday I was sitting in the sonogram room when the radiologist and Dr. Rosenbaum Smith walked in and told me I pretty much definitely had cancer. Other times I feel like I can't even remember a time before all this happened. What did I think about back then? What was the first thing I thought of every morning as I woke up? I really don't know. </div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">Because now, even though I think I do a pretty good job of living my normal life in the face of cancer, it doesn't mean that cancer is very far from my thoughts at any one time. The fact is, my life and my body are irrevocably changed, and though I've never been a big fan of change (I was the dorky kid who cried at the end of the school year), I've been forced to adapt to this "new normal." </div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;">I hope I've learned well, because there is more change in my future once I reach the end of treatment and have to learn to adapt to life post-cancer. But, I've got a ways to go before that gets here and - say it with me now - one step at a time. </div><div style="text-align: justify;"><br />
</div>Unknownnoreply@blogger.com4