Friday, September 16, 2011

Halo, Dolly. Well, Halo, Dolly.

I know Nathan left you with a cliffhanger in his last post and there was good reason.  However, before the "bad" news, more on Sadie.  Tuesday, September 13th, was her 2nd birthday.  Dala (the nickname for Nathan's mom) made her famous vanilla cake with extra special chocolate frosting.  It totally lived up to the hype from Nathan and his brother who enjoyed it each year on their birthdays growing up.  As you can imagine, our diagnoses make us appreciate each day and cherish each milestone a little more.

So now...on the new season of Got Cancer?.  The shit hits the fan.  This is the shit...Nathan and I are crossing the street one day and I grab on to his arm suddenly. He looks at me with that "are you going to have a seizure look?"  Good lord, is this how we're going to spend the rest of our lives...worrying about me having a seizure at any moment?  I hope to god not.  I've got enough to deal with already.  I don't need to be under constant scrutiny.  He asks if I've told anyone yet to which I reply, "No," with an indignant smirk on my face.  "You should definitely tell Dr. Vazquez (the neurologist)."  "Okay, okay...I call her." Again, are we going to worry about every sneeze, every cough, every wobble?

A couple of days later, I am at my weekly consultation with my oncologist, Dr. Volm.  Everything looks good.  Then he routinely asks, "Is there anything else?"  "As a matter of fact, Nathan said I should tell Vazquez I've been a little off balance lately."  "How long has this been going on?"  "Um, a month I guess."  "Well, let's see.  You're last brain MRI was back in April. It's probably nothing, but, you know me, I'm very conservative so let's go ahead and schedule another one." Do you see it?  The shit.  It's looking right at the fan.  MRI results...I have brain tumors.  Bam. Fan.

Are you fucking kidding me?  Perhaps I said that on the post where I found out that in addition to my husband, I, too, had breast cancer but this is really getting out of control people.  Where's that goddamn lottery ticket?

So I didn't want to share this "bad" news until I could hopefully share an upside, if there was going to be an upside.  And there is...sort of.  There are 5 extremely small lesions in the brain.  I read the report.  It said extremely small so I am focusing on that.  Four of them are on the cerebellum which controls balance. Ding, ding, ding!  So I guess I have to give credit where credit is due.  Nathan saved my brain.  The other lesion is on the dura of the left parietal lobe.  You all have Google.  Please look it up.  I'm not up for an anatomy lesson right now.   How is this possible when last you heard the other metastases in my body were responding well to the chemotherapy and Herceptin?  Well, turns out that those drugs do not cross "the blood brain barrier."  Therefore, cancer cells can cross that barrier and allow other tumors to grow.  The brain becomes their safe haven where the drugs can't find and attack them.   Anyhoo, the plan from Volm's side was to add one, possibly, two new chemos to my regimen.  He also wanted to consult with the radiation oncologist, Dr. Narayana, to see what he would recommend as surely I would need some form of radiation.  Dr. Narayana's return from vacation had been delayed because of Hurricane Irene so we couldn't meet with him for a week, hence, the cliffhanger.  So back to Narayana who is another excellent physician at NYU.  His recommendation was to treat the tumors with Gamma Knife Surgery.  It's very high tech and the "surgery" part is a bit of a misnomer.  It's also extremely better than the alternative which is whole brain radiation (WBR).  The short term effects of WBR aren't bad but a couple years down the road there would likely be significant cognitive impairments.

This is what the procedure entails.  Narayana and the chief of neurosurgery, Dr. Golfinos, will be working in tandem.  I was hoping for McDreamy, but, alas, he's not actually a brain surgeon, only he plays one on tv.  I was also hoping for open brain surgery because that seems more dramatic and supports my theatrical tendencies, but, alas, no dice there either.  So Gamma Knife.  How does it work? A metal "halo" (see title's musical reference) with four points is drilled into the first layer of my skull.  This creates a stationery grid of brain.  Using a super duper MRI, they will map the location and size of my tumors a.k.a. lesions, and then, using 200 points of high dosage radiation zap the tumors.  In very simple terms, it's like laser hair removal but this only requires one session.  In fact, it's an outpatient procedure.  I will go in around 5:30 am and be out by 1:30ish pm.  I'll even be awake.  They'll give me some Ativan and another drug which I can't pronounce or spell and is the drug that killed Michael Jackson (but he abused it) so not worry.  The lesions are extremely small and the doctors are very hopeful that this will quickly and easily remove the visible metastases.

Again, it's definitely not good news but it could be worse...I guess.

Mom interrupted.  Sadie just got home from nursery school so I'm signing off.

39 comments:

  1. Elisa. we are definitely doing the extra credit with the praying for all of you. Thank god for Nathan making you tell the doctor.
    I am convinced there is a guardian angel watching over the three of you and he won't let you fail...
    Love and hugs from my family to yours...

    BTW, i used to live across the street from you and used to run into your husband when he ran...

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  2. You didn’t need this dear, I’m sorry to hear it. My prayers are with your family. What else can anyone do but pray and send you good thoughts? Nothing. You’re such a fighter clearly and you’re young and strong. If anyone can beat it, you can. I won’t say that you’re an inspiration blah blah though you are because I know you probably don’t want to be one. You just want be a regular healthy person living your life and that’s my prayer and wish for you...that you get to stop this inspirational, superhero stuff and get to go back to your ordinary beautiful life of raising your incredibly brilliant daughter with your handsome husband, watch her get big, get married and have kids.

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  3. Ditto to what Abby said....prayers, hugs and lots of love coming your way from one mom to another. Kathryn

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  4. I work under this amazing woman, Mailet who started a site called Ihadcacner.com.

    She used this http://www.escozul-cancer.com/en/escozul-documents.html

    suppose to cross the brain barrier easily.

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  5. I'm thinking, after all this, Patrick Dempsey owes you a visit whether he's a brain surgeon or not!

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  6. Sarah is right!
    Wow, crazy news. I'm dropping some F-bombs on your behalf. But also praying for wholeness and healing for you all!

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  7. You. Are. Super Woman! You are amazing and you will beat this. *repeat as needed* Much love from Bensonhurst.

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  8. Sustaining and healing prayers from Pittsburgh. Keep on truckin', girl!!!! You can beat this thing!

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  9. I don't know you but I think about you and your family daily. Praying for you as hard as I f@@$$kin can!

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  10. I am so sorry that you've been hit with another sucker (maybe - hopefully? - small lollipop?) punch! You, Nathan and Sadie are constantly in my prayers. God bless!!

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  11. Another sucker punch indeed. And you still manage Grace and humor under fire. Sending healing thoughts your way -

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  12. You and Nathan are super heros. I'm thinking about you, and you all are in my prayers each night.

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  13. I too have have the Michael Jackson drug @ NYU- it must be the sedation of choice. Haha Good Luck.

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  14. Girl, you continue to amaze with your sense of humor and love. Even though I only know you through friends, I think about you and your family 10 times a day and continually send healing thoughts your way. All the love in the world coming from Colorado...

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  15. I honestly just loudly WTF'ed at work reading the bad news. But you're young and you've got a lot to fight for, I'm sure you'll come through this.

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  16. Well, look at it this way: When you both recover and "go Hollywood," your screenplay is going to practically write itself. If anything, you'll have to tone it down to make all the high drama believable. Good luck with the surgery. You made it this far, and you'll make it through this new catastrophe, too! While away the hours before surgery by deciding which movie stars will have the good fortune to play you: I'm thinking Anne Hathaway ...

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  17. You are in the biggest test of your lives. I know you can pass with flying colors. I hear that fighting spirit in your words. Press on! May God grant you comfort and peace throughout the turmoil.

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  18. You all are in my thoughts and prayers. Just think of this as another hurdle that you must jump over to win the race and each hurdle brings you closer to the finish line as a winner. Keep the faith.....

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  19. Holding you and your family in the light. You are amazing and I know you are doing everything right. I love your energy and I am so glad you told the doctor. Nathan is looking out for you. Just one more thing to tackle and win.

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  20. You are a very brave woman. The way you are taking this on is inspiring. I have daughters, and I hope that I can teach that humor is an element of philosophy. I'll encourage it, but just to be sure they get it, I'm scheduling an appointment with you know. Frieda will be 18 in 14 years. Good time for a talk. Put it on your calendar, please.
    We have never met, but I am Nate's friend Mac.

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  21. I'm not one to ever post or get in someone's business (in fact, I feel embarrased sometimes that I follow your story-- voyeuristic), but I just read this and I feel compelled to finally speak: Elisa, please, please look into ketogenic diets. My mother died of brain cancer and I've spent the last 5 years as an amateur sleuth into cancer and treatments. And there's one thing that keeps popping up over the years-- that brain tumors, seizures, (in fact many cancerous tumors), can be effectively reduced with such a diet. Don't eat the cheap fats a lot of researchers use, though--corn oils, jiffy pb, diet sodas. Coconut oil, butter, macadamia nuts, avocadoes, pate, egg yolks...wholesome food. Please consider it, google it -- there's a lot of scientific literature out there. Wishing you the very best.

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  22. That is crazy that you guys are having to worry about every sneeze, hiccup, etc. Alas, I guess that is just the nature of the beast.

    Gamma knife is pretty badass, not going to lie. Propofol is the other drug to go along with the Ativan--you'll be quite happy with the combo. ;)

    This all fucking sucks, I'm praying for you guys.

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  23. Don't know what to say other than I keep you in my prayers, send you a great big hug and so hope and wish that this will all get better for you and next time you post it WILL be about some good news, you are overdue. Your strength and humor despite what is going on inspire me beyond description. God will keep you strong and I will keep you in my prayers.

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  24. Wow. It's so hard to imagine what you're going through each day. I've never met you but read each post. Will be praying for you today from Florida.

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  25. God bless you and your family Elisa. I am praying for you out here in Virginia. I am speechless, but I think McDreamy should pay you a visit. If anyone has earned it, you have! Part of me does not know what to say...I am angry for you, hurt for you, but I am also happy for you that you have a wonderful husband, daughter, family, and friends that support you. Not to mention your following here. Both you and Nathan are strong. You will both make it and one of these days you will both just exhale. In the meantime keep enjoying each minute, each day. Just because some of us do not have cancer does not mean we are guaranteed tomorrow either. So enjoy life -- live it, and love it! Keeping the prayers going! xo

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  26. The song by Leona Lewis, "HAPPY" reminds me of you, Nathan, and Sadie. God bless you all!

    Happy (Lyrics)

    Someone once told me that you have to choose What you win or lose, you can't have everything Don't you take chances, you might feel the pain Don't you love in vain 'cause love won't set you free I could stand by the side and watch this life pass me by So unhappy, but safe as could be
    So what if it hurts me? So what if I break down? So what if this world just throws me off the edge My feet run out of ground?
    I gotta find my place, I wanna hear my sound Don't care about all the pain in front of me 'Cause I'm just trying to be happy, ya Just wanna be happy, ya
    Holding on tightly, just can't let it go Just trying to play my role, slowly disappear, oh But all these days, they feel like they're the same Just different faces, different names, get me out of here But I can't stand by your side, oh no And watch this life pass me by, pass me by
    So what if it hurts me? So what if I break down? So what if this world just throws me off the edge My feet run out of ground?
    I gotta find my place, I wanna hear my sound Don't care about all the pain in front of me 'Cause I'm just trying to be happy, oh, happy, oh
    So any turns that I can't see Like I'm a stranger on this road But don't say victim, don't say anything
    So what if it hurts me? So what if I break down? So what if this world just throws me off the edge My feet run out of ground?
    I gotta find my place, I wanna hear my sound Don't care about all the pain in front of me I just wanna be happy, oh, yeah, happy, oh, happy I just wanna be, oh, I just wanna be happy Oh, happy

    http://www.youtube.com/watch?v=563JiRLx9CE

    This is from me for you three....

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  27. I love you all, you are a beautiful family!

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  28. Sending positive energy your way, as well as prayers.

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  29. Oh my, I'm sorry to hear this news on top of everything else. I am glad to hear that the procedure is minimal and I'm thinking about you and your family. Happy Birthday Sadie Sunshine!:)

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  30. Sorry to hear this news. I have had two good friends have very successful gamma knife surgery! I will pray that it is equally successful for you and you get no additional tumors!

    Love and prayers from Oregon.

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  31. I have been reading for a while but never commented because I feel sort of strange when I don't actually know you in real life. I had to comment on this though. I had surgery that actually was surgery inside my head and had the super duper MRI with the head cage/halo thing. I can't remember if you have your hair back yet or not but here is something I wish I had known...when they do the MRI, one of the markers has to be on top of your head and they have to shave a circle of hair off the top. Shaving that tiny spot is nothing really, compared to the whole brain surgery thing that was the reason they were doing it but when they started shaving, I cried. I have also had that drug that Michael Jackson died from and I was fine. Good luck to you all! I will be reading and thinking good thoughts for you all. You have such a beautiful family and I absolutely love that you still focus on your daughter as much as possible. I think sometimes that my kids are the reason I have made it through so many health issues and been fine (subjective term). I wouldn't have fought so hard for just me, but when it comes to them I'd do anything. I really am thinking such good positive thoughts for your family!

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  32. Oh boy. Where do I even start? Shit, shit, shit hit the fan indeed. I'm so sorry about all of this. I've been following your blog (from CA) since that NYT piece. I've been worried about you since it took a while for this post to come out. What I wanted to tell you is that as a fellow HER-2+ breast cancer warrior, I should bring a site to your attention: her2support.org. The bulletin board is full of information about the latest treatments for HER-2+ cancer. There are quite a few women in the site who have been NED for years even though they're stage IV. There are those who've fought brain mets repeatedly and won each time. Some members have done Intrathecheal (sp?) Herceptin with much success, on top of the Gamma Knife. Please continue to keep your hopes up for there is still a lot of hope out there for us HER-2+ women. Keep the faith.

    Sending you all much love from sunny CA,

    Marcia

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  33. You have the most intuitive husband...so glad that they can treat these lesions while they are "extremely small." I'm a breast cancer survivor myself, following you from here in Omaha, and sending positive vibes for your gamma knife adventure.

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  34. Hello,
    I have a question about your blog. Please email me!
    Thanks,
    David

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  35. I believe the drug you are trying to mention that killed Michael Jackson is propofol. It is an anesthetic and is usually very short acting unless the doctors keep on top of the dose. I have been on it many times and, for me, it causes fairly bad nausea. I'm glad your lesion are (were) small and hope they were able to get rid of them. Feeling off-balance is scary and crashing into walls or falling over trash cans can be very hard on one's health. I can understand this part of your illness (I have had lung cancer with some nasty symptoms from a blood clot that broke loose after surgery), but the I cannot begin to imagine all that you have been through up to this point. All I can do is pray and hope for the very best for you, Nathan & sweet little Sadie. Please hang in there. You have done such an amazing job so far. I think of you every single day. Love, Blazer & Mom, Vicki

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