Ugghhh, looks like I'm moving on to Stage IV

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HollyinMich
HollyinMich Member Posts: 210
edited June 2014 in IBC (Inflammatory Breast Cancer)

I've been hospitalized since Tuesday and have been experiencing some issues that have had me concernced for several weeks now.  Primarily issues with balance and some right sided weakness.  I fell off of a stool on Monday while trying to reach a cabinet.  When I hit, I fell pretty much directly on my bottom but my head flew back a tad and hit the wooden cabinet behind me.  As soon as I got over the initial "ouch" I realized my right arm and leg had gone numb.  I delayed going to the ER as I was hoping this was just some sort of initial shock to something since really I landed on my butt and didn't hit my head all that hard that would resolve on it's own.  98% of the feeling returned in my arm rather quickly although with some pronounced weakeness.  95% of the feeling came back in my leg with drastic weakness and a pronounced foot drop and an inability to walk.  So here I am still in hospital, Head CT, Spinal MRI w/Contrast, Head MRI w/Contrast and while I was here they went ahead and hit me with an abdomanal US to check my ovaries too.  The only results I have so far are my Head CT and Spinal MRI, should have the rest later today.  Spinal MRI showed 2 bulging lumbar disks which has indeed counted for my back pain and the Head CT w/o contrast showed a singular brain lesion right where my control is for my right leg.  So I am already scheduled for surgery tomorrow to remove said brain lesion.  So far they aren't officially calling it a met but the report read vascogenic edema highly suspicious for an underlying neoplasm, so what does that tell ya.  :(  OB just cam in to see me this morning and didn't say much other than they'd be back with the doc later to go over the US, so that has me thinking that they did find something on my ovaries and I may be hit with the BC/OC double whammy on top of the brain development.  I'm not having a good morning to say the least and I kinda wish they would just tell me what the hell is going on.

So I guess as I find out more myself I will update all you ladies as well.  I just felt I needed to provide all of my IBC sisters an update and to all those worried about potential diagnosises why I have been so darn quiet.  Been thinking of you all and sending prayers out to each and every one of you, just been stuck dealing with my own health issues at the moment. 

Edited Typos from bum hand, lol. 

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  • HollyinMich
    HollyinMich Member Posts: 210
    edited September 2011

    Thanks, Phila!  Quick update.  MRI showed 2 mets, the largest and one that showed up on the CT is 3.1 cm with central necrosis, positive sign for metastic spread.  Second tumor is much smaller they said and located very close to the first.  The plan is to go and remove them both tomorrow, followed by a single targeted dose of radiation to it.

    OB US were clear, yay!!! Just a case of the OB staff being cryptic and adding to my stress, not yay!  But at least now I know I am only dealing with one issue atm instead of a double whammy!!  I really don't know if I could have tackled both so I am thankful. 

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  • 2timer
    2timer Member Posts: 590
    edited September 2011

    Just had to log in and say something after reading your posts.  I am so sorry you've been hit with this.  I know there is nothing I can say that will help but I wanted you to know that people are reading your posts out here in internet land and one of them (me) is really, really, sorry you have to deal with this.  I hate BC, I truly do.  However, it does sound like the docs have a good plan and the mets do seem isolated,  Hopefully, once these get removed  you won't have any more problems.  

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  • 208sandy
    208sandy Member Posts: 2,610
    edited September 2011

    Just wanted to say hi and let you know that I'm thinking of you and happy that the news isn't as bad as you first thought (although it's bad enough) - sounds like your docs do have a good plan and hopefully they'll get you out of there and on your way sooner rather than later.

    Hugs, Sandy

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  • scuttlers
    scuttlers Member Posts: 1,658
    edited September 2011

    Sending lots of cyber hugs, and wish you the speediest of recovery! You will be in my thoughts and prayers. So sorry you are dealing with this. Sounds like the docs are right on things.

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  • Granuaile
    Granuaile Member Posts: 113
    edited September 2011

    Holly: I'm awed by your composure. Good luck with taking care of those two mets, and thanks for being an inspiration. I find the way I handle myself with others when dealing with BC issues is much colored by what I read on this website. I have nothing but the deepest admiration for everyone who's going through this, and I'm so glad I found this forum. When I was first diagnosed, I lost it for a few days, and thought I'd go insane. I'm a pragmatic, "just the facts, ma'am" type of person, and I love that this forum is so real. It's helped me through many difficult days since my dx in March.

    I'll be thinking of you - I like the sound of everything your doctors are suggesting... 

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  • HollyinMich
    HollyinMich Member Posts: 210
    edited September 2011

    Thank you ladies for all of your wonderful words!!  It definitely has helped to keep my spirts up!  Finally, talked to the neurosurgeon and I guess my oncologist was misinformend.  The second tiny met is in my cerebellum.  He said he's not removing it tomorrow but that they will get it later with Radiosurgery/Stereotactic Body Radiation Therapy (SBRT) since it's so small and it would be less invasive.  Surgery is scheduled for 7:30 am tomorrow.  Now just to get some rest and try to keep my mind occupied with other things!

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  • anonymice
    anonymice Member Posts: 532
    edited September 2011

    Holly, I'm so sorry to hear about the mets.  You're doing a great job at being positive - I think you and I are very much alike and being positive is helpful to us.  And just going forward.  But don't feel like you have to be cheerful for us - this sucks.  Feel free to rant, and if you want to get really foul feel free to just PM me.  Won't bother me, I lived in NJ.   :)

    Hugs and more hugs,

    Pam  

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited September 2011

    Holly,

    Wishing you a great recovery from this surgery.  Sorry you are going through this.  Rest a lot and let us know how you're doing.

    Terri

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  • dlb823
    dlb823 Member Posts: 9,430
    edited September 2011

    Holly, I'm so sorry you're going through this, but I'm glad it's been caught ASAP.  I will also be thinking of you and praying for an amazingly successful surgery and extremely fast recovery.    (((Hugs)))   Deanna

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  • starbeauty
    starbeauty Member Posts: 327
    edited September 2011

    Holly... Just want you to know you'll be in my morning prayers. (((hugs))). So glad you found it while you can still kick it back out. Just praying that you are flooded with peace despite the circumstances.

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  • lexi4
    lexi4 Member Posts: 1,074
    edited September 2011

    Holly,

    I am sorry that you are dealing with a recurrence. That STINKS! However, it sounds like your docs are thorough and have a good plan to kick those mets to the curb!

    Hugs and Prayers,

    Lexi

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  • HollyinMich
    HollyinMich Member Posts: 210
    edited September 2011

    Thank you, thank you, thank you ladies for all the well wishes.  It really does mean so much!!  So nervous, but I was relieved to find out I will be completely out for the surgery.  No need to have me concious for any of it.  Just ready to give this thing it's eviction notice in the morning and work on picking myself back up over this latest hurdle.  I know I'm a very optimistic person but I refuse to go down without a fight for my 9 year old daughter and my husband's sake.  I'm too damn stubborn to let this kill me, lol.  I'll try and update when I can to let you all know how it goes and, yes, I am very happy that it seems to have been caught fairly early and they aren't wasting a minute of time on getting everything treated!

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  • abatellik
    abatellik Member Posts: 80
    edited September 2011

    Holly,

    You have been so positive and hopeful for everyone else and I wanted you to know that we are here for you now in thought and prayers! 

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited September 2011

    Holly, best of luck with the surgery.

    Leah

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  • Claudia413
    Claudia413 Member Posts: 114
    edited September 2011

    Holly, you're in my thoughts and prayers for a fast and full recovery. You've been doing such a great job with your posts on this site. I've gotten used to looking for them. Hope you're up and about soon and back to posting.  Sending big (((HUGS))) your way. Your IBC sister in South FL.

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  • annettek
    annettek Member Posts: 1,640
    edited September 2011

    HOlly- Sendin my thoughts and prayers to you <<<<<HUGE HUG>>>>>

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  • Claudia413
    Claudia413 Member Posts: 114
    edited September 2011

    This was just posted on Facebook in one of the IBC groups:

    update on Holly Newman, Update on Holly: She is in ICU, still no movement on right side. One tumor out, other too deep. She is facing radiation and a lot of physical therapy. She wants to thank everyone for keeping her in their thoughts and prayers. Hoping when swelling goes down she gets some movement back. She is upset, but being strong. Please keep praying. Pat (mother-in-law)

    Holly is a very special lady and I know many of you have gotten close to her and might want to keep her in your thoughts and prayers.  Claudia 

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  • anonymice
    anonymice Member Posts: 532
    edited September 2011

    Thank you so much for the update, Claudia. 

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  • chester2010
    chester2010 Member Posts: 101
    edited September 2011

    Holly:  I'm saddened to hear that you have to go through rough patch -- but we all know that you are strong and a real fighter.  You have to be, as you say, for your little daughter and husband.  Best of luck with surgery and future treatments.  It's a bummer but we're all thinking and praying for you.

    Kathy

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  • TooManyCocktails
    TooManyCocktails Member Posts: 182
    edited September 2011

    Sometimes, I just don't know what to say.  I read a lot of the people's posts and it just upsets me; and I can't think of anything positive or that's not cliche` to say.

    But, I'm just going to have to say, I'm thinking of you and wishing you the best.  I hope that you will heal fast and well.

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  • Catmandu
    Catmandu Member Posts: 32
    edited September 2011

    Holly,  I am so sorry you are having to go through all of this!  You are one of the most inspiring people I have ever talked to!  My prayers and thoughts are with you!  Big HUGS!  Keep on fighting!

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  • thats-life-
    thats-life- Member Posts: 1,075
    edited September 2011

    holly, wishing you a successful outcome, hang in there :) xxxx

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  • HollyinMich
    HollyinMich Member Posts: 210
    edited September 2011

    Thank you so much ladies!  I finally got a chance to hop on my laptop and wanted to make sure you ladies knew that I'm still here and kicking!  I've been stuck in the hospital since last Tuesday, August 30th.  10 flippin' days and they are FINALLY letting me go to the rehab facility tomorrow.  Guess that's what I get for finding I have brain tumors over a holiday weekend, lol.  Next time, I'll make sure to schedule it better!

    They removed the 3.1 cm tumor from my left parietal lobe last Friday.  Post surgical MRI showed clean margins.  Woke up from surgery with right sided paraylsis.  Truly annoying and very challenging at the moment.  I move to the hospital's rehab facility this morning to start working on this.  They are telling me 10 to 14 days of rehab before they will let me go home.  I REALLY miss home, but I guess you do what you've got to!

    Monday I have my radiosurgery simulation for the remaining tumor on my cerebellum.  Not looking forward to two hours of being immobilizied in a mask and a box for this, but again, you do what you have to!  Really hoping once the radiosurgery is done I'll see improvement in the paralysis.  Actual procedure in about two weeks.  

    So that's things in a nutshell atm.  I will try and update again soon when I can.  Thank all of you ladies for your prayers and words of support!!  They are very uplifting in such a difficult time!! 

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  • chester2010
    chester2010 Member Posts: 101
    edited September 2011

    Glad to hear from you and that you are doing very well - you do sound very upbeat for all that you're going through.  Have been thinking about you and so happy you were able to post to let us know.  Good luck with the rehab and I don't blame you for not looking forward to the mask procedure, maybe you can take a tranquilizer beforehand.

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  • Catmandu
    Catmandu Member Posts: 32
    edited September 2011
    Holly...Thinking of you and saying prayers that things continue to get better!  BIG HUGSLaughing
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  • abatellik
    abatellik Member Posts: 80
    edited September 2011

    We're all praying for you Holly! What an inspiration that you took the time to update us all (couldn't have been easy with right-side paralysis right now!).  Hoping things only get better and easier from here!

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  • lexi4
    lexi4 Member Posts: 1,074
    edited September 2011

    Praying for a complete recovery Holly.

    Hugs to you,

    Lexi

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  • Squeaker
    Squeaker Member Posts: 87
    edited September 2011

    Holly - You sound as if little will keep you down and that's a gift unto itself! I've had my brain met treated 3x over an 18 mth period and we're finally getting a handle on it. (Two gamma knife treatments and then a craniotomy!!) Scan last month showed first time decrease in what had been stable since end of January. Sending you only the best from another IBC sister - 21/2 yrs as a Stg IV and busy leading an active, full life. Kick some butt in Rehab!

    ~Squeaker

     Lexi, how are you doing?? Good to see your 'handle'.  :^)

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  • HollyinMich
    HollyinMich Member Posts: 210
    edited September 2011

    Omg, Squeaker, I can't tell you how much your post just lifted me up!  Been on pins and needles all day with the gamma knife coming up this afternoon!  Can't sleep thanks to nerves and decadron, lol.  I have made soooo much progress in PT that I have been terrified all day that I'm going to wake up out of this tomorrow right back at square one.  I have movement in all of my fingers and wrist and am starting to get movement at the shoulder.  My leg though has been more of a challenge.  I guess I should look at it like this, if I have to start over at least I know I CAN do it since I already have once and just be doubley determined to do so!!

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  • Squeaker
    Squeaker Member Posts: 87
    edited September 2011

    Way to go Holly!!  By now, the gamma is behind you and I trust any discomfort was limited to the headframe. The decadron is another story - truly evil stuff in my book (even if it does do it's job well). I can't sleep and I get so impatient w/those around me. The good news is once they taper you off it, things do get back to normal pretty quickly AND I get to catch up on my reading in the middle of the night. So, hang in and keep working on that leg. Let us know how things go (went?).

    Squeaker

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