Thursday, February 10, 2011

Overwhelmed

Today was a long day - we met with the breast surgeon and the oncologist and came home to a pre-op package from the plastic surgeon's office.   My ability to be in denial about all this was really tested today and I kind of feel like I got kicked in the a$$.    I'm too tired to cover in detail but the highlights (or lowlights) are:
  • Radiation is definitely on the table more than I thought as the surgeon is worried the tumors might be too close to the skin to get clean margins.  She hopes she'll be able to get clean margins but wants me to be prepared for the worst.  This could make reconstruction a bit trickier but still totally doable.
  • I am definitely having the double mastectomy with sentinel node biopsies of the lymph nodes on both sides (mainly due to the 3 spots that showed up on the left, non-cancer, side in the MRI).    The breast surgeon totally sold me on it today.  She said she does not usually feel strongly about one surgical option over another but feels very strongly in my case - age and cancer all over one breast.   She is confident I will have no regrets and based on some people I have chatted with over the last week or so, I agree.
  • 2-3 weeks post-surgery I should be feeling pretty good and be back to "normal" by 6 weeks
  • They'll give me lots of good pain meds and valium
  • My surgery will be at 4pm on March 4 but I have to be at the hospital at 12:30pm for some prep stuff.
  • The likely sentinel node looks a little bigger than it normally should be on the MRI but she thinks this could be in part due to the fact that I had 16 biopsy samples taken a couple of weeks before from that area.  The oncologist also did a lot of feeling under my armpit and could not detect any swollen nodes.
  • I will almost certainly have chemo due to my age and the fact that there is cancer all over my right breast.   I will likely have a pretty heavy cocktail every 3 weeks for six cycles.  It will start at the end of March and will go on until mid-July.   The oncologist wants to be aggressive to make sure I live healthy for a very long time.    She also suggested having a port implanted, potentially during the surgery to make future chemo treatments easier on my veins.    (A port is installed under the skin between the breast and the shoulder and provide a line directly into the veins so no needle pricks at each treatment.  Ports themselves are not so much fun so I am not excited about this.)
  • Because breast and ovarian cancer are very related, we will talk later about whether or not to remove my ovaries.  (Also, ovaries produce estrogen which fuels my type of cancer.)    That is a post-chemo discussion.   Chemo could put my into menopause (although this is less likely the younger you are).
  • When the pathologist did the further studies on my biopsy samples to determine the type of breast cancer, only 1 of the 3 known cancerous sites was tested.   This seemed to surprise but the breast surgeon and oncologist.   It is *possible* that different tumors could have different types.   This kind of freaks me out.    The breast surgeon is going to call the pathologist to figure out why they did that.  It is possible they determined that the samples were substantially the same so no further testing was needed.   Everything will be tested very closely after all the breast tissue is removed in surgery.
  • The oncologist wrote me a prescription for a "hair prosthesis" AKA a wig but I found out this afternoon upon calling CIGNA that these are not covered under my plan so I will have to pay for it out of pocket if I want one.   
  • I cannot eat or drink ANYTHING after midnight on the day of my surgery.  I am sure I will be totally nauseous anyway but I can't even drink water.  
  • The oncologist referred to my plastic surgeon as an "artist" and to my breast surgeon as "meticulous."   VERY glad to hear that!
  • We really like the oncologist - direct and to the point but very personable and nice.
  • Assuming I do not need radiation, the oncologist thinks we will definitely be able to go to Disney at the end of August - a trip we had already started planning.  That is going to be my light at the end of the very long and dark tunnel.
That is all I can make out of my notes.    Keep the blog comments and emails coming as I have gone back to a little bit of a dark place and could use some good vibes and happy thoughts.  I know I will get through this but it really is going to suck!

Oh and a couple of more prayers for my brother-in-law's father would be appreciated.    He has taken a turn for the worse and could use some good vibes and happy thoughts of his own.
 

9 comments:

  1. This is overwhelming and scary, but you are so strong that YOU CAN HANDLE IT! I am 100% sure of this. You have so much support, from friends who have fought this terrible disease and also friends who have not...and they, along with Craig and your family and your beautiful children, will keep you going.
    thinking of you! Katrina

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  2. "Fortitude is the marshal of thought, the armor of the will, and the fort of reason."

    -Francis Bacon.


    You go, girl.
    CST

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  3. Bless your heart, Amanda! I had a day very much like this on July 12, 2010. I did 6 rounds of chemo, without a port. If you've got good veins and drink a lot of water, you may not need one. My onco wasn't a big fan of ports, and I had a friend who had a bad experience with one, so I was glad not to have it. I chose a double and don't regret it one bit. Now I can choose to wear my prosthesis or not. Most of the time I don't. I'm OK with it, I don't think at this point I'll do reconstruction, although that may change. I'm 5 days away from being done with radiation. If you need it, its okay. You can do it. You have a lot of support, and you are strong!

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  4. okay, the positives- you're being hit with understanding now and not ten minutes before you hit surgery, so you'll have time to process and prepare.

    you're still young, with plenty of energy to fight.

    you're not alone.

    that's all i can come up with, bc i'm a little terrified for you.

    question: what's the difference bt a breast surgeon and plastic surgeon?

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  5. To my dear, dear friend, Amanda! You're an incredible woman with an amazing family and friends who all love you beyond words (including me)! I know it is going to suck, but you do have a light at the end of the tunnel and lots of them in the many, many years to come! And we all do, too....knowing that we get to see you after you kicked some serious ass and being able to say we know and love that girl. Lots of love to you, Amanda, and truck loads of positive thoughts for you and all of your family while going through all these hard times!

    Hugs,
    Kari

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  6. Amanda - Still can't believe the news. I've been following your story since I found out a couple weeks ago. You sound confident, strong and knowledgeable ... all key ingredients to get through this battle successfully. YOU CAN DO IT!! I am confident that Cathy is watching out for you, guiding you, touching you, calming you and loving you.

    On the topic of "hair prothesis" ... we went through that whole ordeal, insurance fun and all. If you have any interest in becoming a red-head for a while, I've got a barely used, $1,500, real hair wig sitting here in Milwaukee. Drop me a line if you're interested and I'll ship it your way!

    The Milwaukee Gravelles are with you all the way. Hang in there, remain strong ... you will kick this thing!

    Love, Mike, Maddie, Charlie and JP

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  7. Amanda,

    I don't know if I have ever met such an incredibly strong woman, I bet it is hard to feel that way some days, but just know that you are amazing! You have some crappy days ahead of you, but the light at the end of your tunnel is there and you will have so many many more fantastic days with your family along the way and for many more years to come! Take strength in those around you, near AND far. Sending you our love and know that you are in our thoughts daily. :)

    Much love to you, Craig, Raymond and Emily...
    Denise

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  8. You are NOT alone.
    Love you sweetheart.

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  9. Amanda -- Getting a port was one of the best things I did. It helped me tremendously to avoid numerous needle pokes. Chemo damages the veins and when you have nodes removed you end up with just one arm they can work with so if they blow a vein on one side the options are limited to your hand and then your leg (painful options). Since you're having sentinal nodes removed on both sides, avoiding arm IVs would be helpful to preventing lymphedema. And, they can draw your blood from the port as well as give you chemo and other meds and with the numbing cream you won't feel a thing. I know someone that had a tough time with their port and had to remove it but that's one in all the women I know personally who have had chemo. It can be put in during your surgery if you plan ahead and if you don't need it or need it out you can have it removed by the breast surgeon during a reconstruction surgery. As for radiation - for me it was the easiest part of treatment aside from having to be there daily but that was good too - private daily meditation/prayer time same time every day. Wasn't painful at all just some discomfort at the end with minor burning but if you end up needing it then I can share tips on how to minimize side effects and what products I used to protect my skin (doc was amazed with my results). But for now -- for now --- take one day at a time. Lean on us as much as you can and need - knowing we've been there and you can learn from our experiences to help you get through this. Love you!!!

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