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

HollyinMich

The radio surgery appears to have been quite successful. They told me when I finished that everything went beautifully!! So far so good as well as very minimal inflammation in response to the radiation. Was pretty worried that I would end up back at square one with PT when I have made soo much progress this past week! I have been regaining more and more movement in my right arm. I woke up from the craniotomy with only small amounts of movement in my right index and thumb. Now I have full movement in all fingers and can roll my wrist as well as grip. My flextion is quite strong in my elbow and shoulder. Extension is still quite weak but it is improving every day! Anyway you look at it, it's getting better a little each day!

My right leg is responding at a much slower pace. However, with the assistance of a brace, I have been able to walk. Yet again this has been improving daily as well. I went from being unable to move the leg at all to being able to pull my leg forward using my hip muscles. So I have been focusing on doing all that I can to use my stubborn pig-headed strength to get my body moving in the right direction!! I am never one to pass up a challenge and I will prove that I can beat this thing! This has been nothing more than yet another hurdle God likes to throw at me every so often just to keep me on my toes and to remind truly how precious each day is!!

Monday, I am scheduled to start the Tykerb/Xeloda for disease maintenance. Wednesday, they set a goal for a release date from PT. Lol, and well you know me I'll do everything to bust my ass to get there probably before that date! I have a ton of faith that this will help from here on out! I was fortunate to have had my klutsiness come out that Monday to play. If it weren't for my dumb luck (and I apologize to anyone who this might offend because I typically keep these opinions to myself) and God really having my back that day, I'd still be walking around with those boogers in my head just growing and waiting to take me out! At least now whatever happens, happens but I have been given the chance to fight it and that makes the world of difference to me!

Thank you all again so much for all the words of encouragement, prayers, thoughts and cards. It really does help on those days when the stress and anxiety are flowing to know I have so many people behind me to help lift me up and keep me going!! Lots of love and hugs to you all!!

Squeaker - agreed on the decadron, lol, but you do what you have to do!! 

ma111

Holly,

Sorry you are going through this journey and sending you lots of hugs.

Glad to hear your arm came back and I hope your leg does also! You truley are a fighter.

Thanks for the updates.

spar2

Holly, your story touched my heart and wanted you to know I am praying for you and sending you a big virtual hug.  You keep strong and "do what you have to do" 

anonymice

Thinking of you Holly - hope you're doing well and have that "Rocky" theme song running through your mind as you work to recover!!  

But not ALL the time, as that will cause you to lose it and smack your therapist upside the head with a handy mobility device.  Not the best way to build those professional relationships!   

Claudia413

Holly, keep on keeping on, my friend.  It was nice to have you join us this past Wednesday night in the chat room during the IBC radio show. You really came up with some great questions for our guest. He even said that...LOL. Praying that each day brings you closer to getting rid of those little buggers.  (((Hugs)))

rjbaby69

Sending lots of cyberhugs and well wishes your way!  You are in my thoughts and heart!

HUGS!

profbee

Hi, Holly.  I've got IDC, so I'm not usually on an IBC board, but I stumbled across this tonight and can I just say YOU ROCK?!  Seriously, you sound like such an awesome person, and although I was bummed to read these pages about your recent fight, I'm just in awe of you.  People say to me a bunch "you're so strong" blah blah and it usually feels like just crap people say, but thanks from one strong woman to another for being a fighter and showing us how it's done with grace and personality.  Thanks for letting me read along with you tonight.  You really inspired me.  Best of luck.  

hotandcold

Hi Holly,

Just surfing and found your post.  Thanks for sharing with all of us. Thanks for sharing so many of the details. After my past 3 stays in the hospital I now know there is so much more to a hospital stay.  Wow that's a lot to go through. To see how you have handled and kept on going with all this stuff you are dealing with has helped me think about my potential to keep on going. You inspire me. I am a big advocate for PT.  May all go well and speedily.

Corrine    

HollyinMich

Hi ladies,

Thank you all so much for the words of encouragement and support! I've been home now for almost 2 weeks and it's been such a whirlwind getting things settled with home care, doctor's appointments and just trying to settle back in. I spent 36 days on Decadron and the swelling is just beyond ridiculous! I feel like a 500 lb version of me, lol. Hopefully, it will go down soon! They started me on Tykerb and Xeloda. The Xeloda dosage needs to be adjusted. I made it 10 out of my 14 days on at 8 pills a day before I had an issue. Can you say holy explosive diarrhea Batman!! Even with getting directly into a shower, it was so acidic that I now have a new appreciation for babies and what diaper rash feels like! Ouch!! Desitin is my new best friend, lol. So I have to go back to my Onc later today.

Thankfully, though, I am seeing improvement in my arm function every day. I went from only being able to move my thumb and forefinger right after surgery to now having full finger movement, wrist rotation, elbow flexion and extension and now I am getting shoulder movement back. My right arm is still very weak in comparison to my left but strength will come back with use. My right leg is still not moving, but I know with time and a brace that I will be fitted for once this swelling goes down I will be able to walk with a walker. Who knows, the brain is a mysterious thing, I could wake up tomorrow with it just working, lol.

Well, I need to get to bed. Goodnight, ladies, and thank you all again for your words of support!

chainsawz

Sorry I'm so late to chime in here...I just saw this thread!!  I had two small brain mets treated over 2 years ago and took tykerb until this spring.  The big D is a pain indeed and hard to control.  I never used sooo much toilet paper in my life!!  I had to do a dose reduction (5 pills a day) due to another reaction (severe rash with high fever) and that helped slow it down to only 5-10 times a day....gads.

I have been dealing with radiation necrosis which is more common after brain cyberknife than I realized.  I'm getting avastin to see if we can turn it around.  I'm on tons of prednisone for my lungs so I know what you mean.....I can't wait to see my neck again!! 

PM me anytime, I just wanted to let you know I was out here in cyberspace with ya!!  lisa

anonymice

I am very sad to say, Holly passed away November 21st from a pulmonary embolism, with her loving family around her telling her they loved her.  She was in great spirits and was doing well with treatment and recovery.

I am sorry for cross-posting....a kind person posted this on the Stage IV board but people didn't know her there so much. 

profbee

Thank you for letting us know.  I'm so saddened by this news today.  Holly had such a spirit!  

chester2010

What sad news.  I have been wondering how Holly was as we hand't heard from her for some time.  She was so confident and had been doing very well after her surgery and treatment.  She was always a great support and encouraged everyone on the list.  Thanks for letting us know.  I send my prayers to her family and friends and hope they can take some comfort in knowing that she helped so many women worldwide with this horrible disease  and was well loved.

Kathy

Leah_S

Pamonymous, thank you for letting us know.

My sincerest condolences to her family. May G-d send them comfort.

Leah

anonymice

She was a wonderful, funny, positive lady and one of the very most supportive and kind persons on this board.  She had every hope for the future.  My heart breaks.