Saturday, March 5, 2011

SERIOUSLY????!!!!!

Well, there's no way to sugar coat this so I won't.  My PET scan revealed spread of disease. That's the doctor's nice way of saying-spread of the cancer-to my liver, many lymph nodes, part of my pelvic bones and parts of my spine.  This classifies the cancer as stage 4.  Now if you are offended by swearing jump down to the next paragraph or better yet skip this post all together because I need to get Brooklyn right now.  ARE YOU FUCKING KIDDING ME, PEOPLE?  This is me.  Elisa.  I don't get cancer much less the really bad, terribly serious kind of cancer.  It just doesn't suit me.  Heart disease.  I could see that in my future with all my emotions running wild, but cancer? Or diabetes.  That's a likely disease for me.  I have PCOS and it's in my family.  But CANCER? No way.  Give me a break.  This is fucking ridiculous.  Fuck, shit, mother-fucking, what the fuck? AHHHHHHHHHH.  

Sorry but I needed to get that out and I'm sure there is more coming so I apologize if I offend anyone's sensibilities but I have cancer so fuck your sensibilities.  As one of the nurses said to me yesterday when she heard that Nathan and I have cancer at the same time and were diagnosed 9 days apart, "This is some shit!" It is.  It is beyond absurd to me. 

Besides, the swearing, I am virtually speechless.  "What?  What? WHAT?"  That's all people can say to me and that's all I can hear in my head.  "What?" I only have one plan right now and that is to dive head first into denial and stay there until I can figure out my escape plan.  Perhaps if I just get on a plane to South America I won't have cancer.  If I can just get out of this place, I can leave it behind.  It's all a big mistake.  Each step of the way, they have been talking about someone else.  It's not me.  This is NOT my story.  Fuck the plane, I need to run.  Get out of my way.  MOVE.  I gotta run.  I just have to runaway.  But I can't.  Sadie.  Nathan.  Nathan and Sadie.  This can't be.  This can't be their story either.  There is only one option; the treatment works. I survive.  I thrive.  This can't be Sadie's story.  There can only be one ending to this because I didn't go through a horrendous pregnancy, 39 hours of non-medicated labor and delivery, a broken vagina for 9 months post-delivery and no sleep for the past 17 months not to get to watch this beautiful child grow up, graduate, travel the world, speak six languages, win So You Think You Can Dance, solve the Middle East peace crisis, cure ALL cancer, invent an app for teleportation, find the perfect partner, have kids and grow old.  I mean it is a lot of pressure but I know she can do it and I'm not watching from the nose-bleed seats in the sky.  Hell no.  I want to be here on terra firma.  I totally believe in an afterlife, a very beautiful and well-populated one.  But I'd like to have this life for many more decades before I get my passport the "other side". 

I am so mad.  I am so sad.  I am ________.  I don't know.  I don't who or what I am.  How can this be going on inside my body with no symptoms?  Besides the lump in my breast, I'm as healthy as a horse.  If someone put a gun to my head I could probably run a marathon.  It would hurt but I could do it. I look and feel perfectly healthy.  Okay, I could lose the 20 lbs I still haven't lost from my pregnancy but come on.  My hair is longer and healthier than it's ever been.  My nails are even long and manicured.  It is not me. 

I know I will have to get around to accepting that it is me and rather quickly so I can "fight" this but I hate that.  I hate all the "you're going to fight this", "we're in this fight together" crap.  Really?!  What am I fighting?  It's a ghost.  I'm fighting a ghost.  It's lurking in my body but I can't grab it by it's throat and punch it and kick it and yell it and punch it some more.  It's a part of me.  It's embedded itself in me.  I have to trust that the drugs and the poison they're going to put in me knows how to fight a ghost. 

Okay...I'm sure many of you are wondering about the practical side of things.  I am pasting and copying below the notes my cousin, Rachelle, took during the consultation with my oncologist, Dr. Matthew Volm.  By the way, big shout out to Dr. Volm.  This man is an incredible healer and teacher.  I am so thankful to be in his care.  However, since the news went from bad to worse, I am going to take the advice I gave to Nathan and would give to anyone else and I'm getting a second opinion at Memorial Sloan-Kettering.  I told Dr. Volm that I would be seeking a second opinion at MSK.  He not only said that was it was the right thing to do but he gave me the names of a couple of doctors he knows and respects there.  He also said that if I preferred to get my treatment at NYU but MSK was conducting some study that I wanted to be a part of he would partner with them so I could do both.  He had no ego about it and even offered to put in a call Monday if I was having a hard time getting an appointment quickly at MSK. 

Volm wants to start me on chemo immediately.  I am scheduled to have a mediport like Nathan's implanted early Thursday morning and then have my first treatment that day.  They will be pairing my chemo with a drug called Herceptin.  My cancer is HER2-positive.  Actually, that is part of the good news.   I'm sorry.  I was dwelling on the negative earlier but there are a lot of bright spots in this diagnosis and prognosis.  HER2+ breast cancer is the most aggressive form of cancer but now there are drugs which act as antibodies and can easily and often very successfully attack the receptors on these cancer cells.  The other good news is that my lungs were clear which means my brain is clear. Hey, that gives me an idea.

I am going to buy a huge poster of the anatomy like they use in medical school and learn all the parts of my body: every organ, every bone, every vein.  I'm going to thank all the parts that are in good working order every day and then I'm going to instruct them to put peer pressure on the right boob, my liver and my affected bones to get with the cool crowd.  I mean all the cool organs are healthy.  Don't youuuuuu want to be healthy too.  Just try it.  It won't hurt. Hey, I'm going to try everything at this point.

Back to the treatment.  Most of it is in Rachelle's notes.  I'm sure there is more to say and talk about but I'm pretty tired and going to take my morning nap.  I'm regressing to a infant-like sleep schedule.  For all of you who are worried about calling or emailing or texting, don't.  Call, email, text, comment on the blog.  Whatever.  I may not be able to get back to you for awhile but I really love all the outreach.  And don't forget about Nathan.  He still has cancer too. 

I love you all.


YU - Dr. Volm - Friday, March 4th, 2011

PET Scan: Spread to liver and bone = Stage 4

Cell Type: Her2 + (only 20% of breast cancers) - excess growth factor causes cancer cells to grow
                Estrogen receptor negative

Treatments:

         Herceptin:
  • antibody 
  • engineered to attach to growth factor receptor 
  • targets Her2 cancer cells 
  • given with conventional chemo
  • Side effects: 1% risk (very rare) heart problems - therefore need baseline echocardiogram to document current heart function and follow-ups throughout course of treatment
  Chemo: Taxol & Carboplatin
  • Side effects: Hair loss (mainly scalp), mild nausea, decreased WBCs and therefore decreased immune system and increased risk of infection, peripheral neuropathy (tingling in hands and feet), periods will stop, hot flashes, fatigue

Plan:

  1. Place Powerport next Thursday 3/10
  2. Start chemo: Taxol/Carboplatin  - given weekly
  3. Start Herceptin - given weekly with chemo
  4. Echocardiogram to establish baseline heart function
  5. Repeat PET scan in 3 months to assess response to treatment

Notes:
  • Need good thermometer in the house (temp > 100.4 F call Dr. anytime)
  • Disability: Dr. V will support and provide all necessary medical documentation
  • Heart scan (Echocardiogram) will be done initially and then every 3 months while on Herceptin
  • 75% response rate to Herceptin in patients with Her2+ breast CA
  • Modalities to increase WBCs if drop too low: Neupogen, etc...
  • It is Neutrophils that are decreased therefore infection would most likely come from self so: wash hands, wash fresh fruits/veggies, etc. No salads or uncooked produce at restaurants - stick to cooked veggies while out.
  • Sick contacts should not cause illness - no need to worry about Sadie in daycare spreading germs 
  • Surgery no longer a role - may consider down the road if good response to chemo
  • BRCA testing - no emergent testing necessary - may help Sadie in future
  • Long term - lifetime treatment with Herceptin 
  • Expect chemo for at least one year but likely more
  • Expect to spend 1/2 a day getting chemo once a week at first and then taper to 3 weeks on/1 week off, etc...
  • Will see Dr. V once a week at first while he carefully monitors progress
Tips:

  • Can use tea-tree oil for nails to keep them moistened and strong

Staff:

Oncologist: Dr. Volm - Hours: T/Th/F
Nurse Practitioner: Peggy
Receptionist: Joyce



Next appointment: 3/10/11 Thursday - NYU

*Early am Mediport placement - Will receive a call the night before with scheduled time but expect 7:30 in Tisch building (33rd and 1st Ave)
*Start Chemo and Herceptin same day
 

36 comments:

  1. Elisa,

    I don't know what to say other than the fact that I love you and am here for you if you need anything. I consider you like a sister and I hope you know that I am willing to do anything to help you and your family. I am not working at the moment so I have a lot of free time if you need a babysitter for Sadie or a ride here or there. Whatever it is, please do not hesitate to ask. I realize right now you're just trying to process all of this but I truly believe that you will make it through this and it will only serve to make you stronger and Nathan as well to continue to be the most wonderful parents to that beautiful baby girl. You are a fighter, you always have been and this is just another battle to fight, and you will win. I love you.

    Alessia

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  2. Elisa, I am so very sorry to hear this news. I am so sad that you and Nathan have to go through this. It is so entirely unfair. I wish I had magic words, but please just know I am thinking of you both constantly and am here whenever you need me. If ever I have met, strong and loving people, it is the two you.

    Sending all my love and strength.

    Dayna

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  3. I just wanted to tell you that your words are so strong and real and powerful and i admire you for your ability to be so open about EVERYTHING. My thoughts and prayers go out to you Nathan, Sadie and your entire family during this time.

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  4. Elisa,
    What ever i can do, please, please take me up on my offers.
    i can clean a wicked toilet. and kitchens, bedrooms, houses too.
    i can make a great dinner. and lunches and breakfasts too.
    i am a good shopper. Food, medicine, trashy reading mags, pajamas, fresh flowers to look at...anything.
    i will research.
    i will read.
    i will listen.
    whatever i can do to make some part of your life easier, please allow me to do it for you, and your family.
    so fondly,
    sarah (one of your upstairs baymates from corcoran)

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  5. If anyone can beat cancer it will be Elisa because she does not take any shit from anyone or anything. That cancer better just give up now because there is no way it's going to win this fight. Elisa I am flying to New York on Thursday so get my to do list ready. Love you guys. Yuky

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  6. Sweetheart - We believe in you. All of us. And we will be here for you. All of us. And when you publish your book (that then gets made into a movie) about how both of you beat cancer, we will celebrate alongside you. All of us.

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  7. Elisa, I'm reading this at 6:30 in the morning and am in total disbelief. I am saying daily prayers for you, your husband, and your beautiful daughter. Please let me know if my husband John can help get you in touch with anyone at MSK...he was there for 4 years training (gynecology oncology), but he had to rotate thru the breast service so knows the department. We also know Marty Weiser well from colorectal and your husband is DEFINITELY in great hands with him. Please let us know if you need any contacts or ANYTHING for that matter. We are back down in Miami now, but will gladly do anything we need to. Many hugs and kisses to you and your family and I know you can beat this so keep you head up! -Cheryl Case-Diaz

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  8. Dear Elisa,
    You don't know me, but I am married to Ted (Buzz) Federici ... and your father and Aunt Addie and Uncle Gary are old friends of ours. Ted has a blog of his own and shared yours today with his "list". The response has been overwhelming and you should know that we're all sending you good vibes and positive energy right now and are ready to do more when you're ready. We'll stay in touch by checking your blog and speaking with Addie and Gary. Coraggio, dear girl, and know that we're on your side.
    love,
    Laura Federici

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  9. SWEET ELISA,
    I read this blog while waiting for a flight from Rio, South America (ironic you should mention South America)having no clue as to why it was forwarded to me...and as I read, and blinked, and started to understand ... all the air was sucked out of the room. This is IMPOSSIBLE to wrap your head, or your heart around. I simply can't imagine...Of course, I want to help. I wish I lived closer... but there are certainly things I can do from afar. You name it. Perhaps when this becomes the "routine" (yeah right...WTF) of your life, you and Nathan ... and/or your Mom and Sadie can take a break in sunny CA.
    I lived through your pregnancy with your Mom. She was grandma-prep for me... along with all the other things we lived through together. Dear sweet child...I am so sorry for you and Nathan, each with a difficult burden to carry alone, and together. But burdens come and go... I will be sending much light, love and prayer your way. Rose Ann Scamardella

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  10. Elisa,
    It's been a long time since the VU danceline, but I wanted you to know your old team is thinking of you. I remember you fondly and loved the wit you always brought to performances and practices. This really sucks, but a ton of people out there are thinking of you, praying for you, and shaking their heads, saying FU to this nasty disease. Get better. Get Nathan better. Hold everyone close and tell them exactly what you need from them. Anything that your extended friends and acquaintances - even long lost ones - can do give us a shout. Hugs, Jenn Cihla

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  11. Praying for you both. Can not even imagine. Im heartbroken just thinking about this for you.

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  12. I don't know either of you, but I will keep you and your family in my prayers.

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  13. Elisa,
    I don't know what to say - this is so unfair, and we are so so sorry. We are thinking of you all the time, and we love you and Nate and Sadie. I am sending you hugs all day and night.
    Love, Raina

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  14. Elisa,
    I am a friend of Brooke and Jeff Stortz - Brooke shared your story with me, as I am a breast cancer survivor - diagnosed July '09 while 8 months pregnant with my second son. He was born on August 17, '09, so I imagine, very close in age to Sadie. I, too, did Carboplatin - with Taxotere, not Taxol, but I imagine very similar, and also did Herceptin for a year. I know you are in total shock and disbelief right now, but I wanted to offer to be a resource for you in any way I can. I will be praying for you and Nathan, and will keep in touch to offer you my love, support and everything else I can. Your humor and blog in many ways sounds like I am writing - I think we are very similar and would love to meet you!! I know we would be friends!! Thinking of you constantly... Amy McDowell (Denver, CO)

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  15. Elisa,

    Words fail me. We are sending you nothing but strength and love from out here. This is absolutely wrong, and it is our great hope that fate will soon correct its mistake and return both you and Nathan to health.

    Please, please let us know if there is anything we can do. I don't know what the hell that would be, but don't hesitate to ask.

    My friend Cambria is writing you. She may have some insight that is specific to the ridiculously fucked up (sensibilities!) situation you've found yourself in.

    Always,

    Dan Ewen
    + Kim, + Moxie, + Gardner

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  16. Hi- I heard your family's story via Ad Hoc Mom and had to come say hello. Sending massive prayers up for you, your family and the doctors helping you guys through this awful time.

    For what it's worth, I think you're a fantastic writer, and I hope blogging can be a helpful outlet for you during all this. And don't bother apologizing for your language... good God, woman, you've earned all the FUCKS you fucking want. Now go kick that cancer ghost's ass!
    Kendra

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  17. Nathan and Elisa,

    Reading your words has made us part of your experience as much as we can be. You share so much.

    The Drawing Studio Faculty at Parsons all express their love to you both and await your recovery. Nathan, you are missed.

    Big hugs,
    Alaiyo

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  18. I don't know you or Nathan. I learned of your story through Facebook, and it didn't seem real. Googled it, found your blog, and was pretty mad to find out it IS real. I was hoping to find a big "THIS IS FALSE" on Snopes. You will be in my daily prayers, in all of my positive thoughts, and if there is a way to send good strong vibes to you from Atlanta, they are on the way. Like Kendra said above, kick cancer's ass!!! Show it who's boss!!! I look forward to reading about clear scans and remission within the year.

    Love you to and your family,
    Laura

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  19. Elisa,
    I don't know if you remember me from Marymount but I was a year below you and remember you well. I found your blog and webpage through Claudine Goin and I cannot tell you how touched I am by your fight. I am thinking of you and your husband and am keeping you both in my thoughts and prayers. I know you'll both beat this and I look forward to reading all about the great progress you are both making and seeing and hearing more about beautiful Sadie.
    All the best,
    Mari-Claudia Jimenez

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  20. Elisa, You don't know me...but somehow a friend of a friend of a friend on FB or whatever forwarded me your story and I found your blod and well, shit. Just want to say you have out family's thoughts, prayers, crossed fingers, smoke signals to God or Budda or whomever will listen. I wish you a shitload of strength to get through this, to all of you.
    Love to you and yours,
    Brandy

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  21. Elisa, You don't know me...but somehow a friend of a friend of a friend on FB or whatever forwarded me your story and I found your blog and well, shit. Just want to say you have out family's thoughts, prayers, crossed fingers, smoke signals to God or Budda or whomever will listen. I wish you a shitload of strength to get through this, to all of you.
    Love to you and yours,
    Brandy

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  22. I'm a stranger too...someone tweeted out your blog link & well shit, here I am...I couldn't come here & not say something...so...I hope you are both feeling decent...now, go kick cancers ass! xoxo

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  23. I don't know you either ... but am pray, pray, praying for your entire family as well ... God is still in the business of miracles - never ever lose hope ... xoxoxoxo

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  24. I found your blog through a post a friend of mine put on Facebook. I wish that I could find the words to let you how much your story has touched me. You and your family will be in our thoughts every day and our prayers every night, that you stay strong and beat this.

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  25. I have never met you or Nathan or your beautiful daughter Sadie, but reading your blogs and hearing your story makes me wish I did. You are so full of love and spirit, I only wish wonderful things for all of you. This is a vile disease and I hate that you two are going through this. Now that I know about you two, I will never forget you and am committed to joining the fight to help you however I can. I am not rich, but my donation will be one of many as you both bravely fight and eventually conquer this fucker of a disease. (I'm a Bronx Puerto Rican, so please excuse the foul language.) God bless you all!
    Love, Elizabeth Burke (Westchester, NY)

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  26. Don't know you, not even sure how I found this page. Been reading for hours. "NOT FAIR" is all that comes to mind. You guys are in my prayers.

    Cherie (OHIO)

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  27. Hi again from Liz in Princeton, NJ!
    I emailed you and Nathan tonight, having just read your story online. Your blog is amazing; *both* of your personalities really shine through, which encourages me because I just know in my heart that the two of you have what it takes to come out smiling on the other end of this nightmare!
    I will faithfully follow your blog and continue to alert my own friends and family to your story. Together, friends and strangers, the love of the world is holding you up!
    Love,
    Liz Moore, Princeton, NJ

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  28. P.S. from Liz in Princeton:
    I am dedicating all daily Facebook status updates this week to you, your story, your blog and the support/donation site set up by your personal family and friends. After that, I promise to continue raising awareness! I pray that you both have a "good" day of feeling stronger today, one step at a time.
    Warmly, Liz Moore, Princeton N.J.

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  29. Thinking of you. I have a two year old. On the same chemo treatment too.
    Sending you whatever it is you need right now!
    Here is my blog, if your interested.
    Mamacan.blogspot.com. I am so sorry for what you are both facing. You are not alone.

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  30. you are not alone... i pray every day to you!!!!be stronger...you are always on my mind!!!

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  31. I came to your blog from the segment on the Today show. My path changed drastically too in 2003 when I was diagnosed with multiple sclerosis. I'm only telling you this because I want you to know that following your blog and praying are a new purpose in my life. You've got Granny from Indiana praying and spreading your requests across the internet now. And it's not me but my God in whom I trust.

    Be encouraged today.. as you've given me divine direction for my prayers.

    Thank you for sharing your story.

    Martha aka SwitchingGranny

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  32. Words can't describe how fast my jaw hit the floor when I saw your story on the Today Show...so I had to check out your blog. And...What The F**K is right!!! Jeez!(and I say, f**k without hesitation...because,like you said...it does help somehow...as I too, have scattered lots of those little "sanity saving" profanities throughout my own breast cancer blog.)
    I got goosebumps when I read that you were diagnosed exactly one year after I received my triple negative diagnosis...February 23rd sucks!
    The way you and your husband are handling things...WOW! I am blown away! I will be following your story...you both are an inspiration.
    I agree with Cherie(in Ohio)that it's beyond "Not Fair"...and I'm sending lots of good mojo your way.

    Also, like Granny, I thank you for sharing your story...
    xoxo Janine (Tampa Bay, Fl)

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  33. I saw the video the TODAY show posted about you and your husband and shared the video on my Facebook page because I want to spread the word and generate prayers and donations your way. Thank you for warning your readers about the language. Normally, I am very offended by swearing - it literally hurts my ears, BUT in your situation with what you are dealing with, I understand that you had to get this out of you so that your body could focus on healing. Lest I seem unthoughtful or uncaring, I have a first cousin (one month younger than me) who has colon cancer and has had surgery, chemo and radiation and is now receiving chemo for 1 week on, then 3 weeks off. He is in stage 4. My aunt is a breast cancer survivor. My brother-in-law passed away from lung cancer. I have a granddaughter just shy of a year old. I desperately want you and Nathan to survive this and raise your beautiful little girl. I have added your blog site to my blog so that I can follow your story. I'm not going to offer you platitudes that won't change your situation, but I will pray for you both. I have learned that sometimes it is the best thing you can do for someone, for I know someone prayed me through my worst times when I couldn't pray for myself. Thank you for sharing. Like a previous respondent, I hope to see your story in a movie with YOU and NATHAN acting as yourselves!

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  34. Just a correction. My cousin has stage 3 colon cancer. I pray that he and Nathan beat their cancers!

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  35. I don't know how I came to your blog. I was googling my name, (Elisa) and found you. I read your story. I have no words, except LIFE IS NOT FAIR.

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  36. you and your family are in my prayers

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