Just a little brain surgery...

[hutchibk]

Where I've been for a leetle while...

I was checked in on Dec 15 for surgery (just after SABCS)… out on Dec 19. I had a craniotomy, otherwise known as brain surgery (yikes?), on a small part of the right cerebellum area. But as always, no symptoms at all. We saw it on my 3 month MRI. We had to remove the necrosis because it had started to spread and it threatened the 4th ventricle. It turned out to be a 1/2 dollar size hole in my right cerebellum covered w/ a titanium mesh and stitched up like Frankenstein. About golf ball size scar tissue/necrosis underneath had to be removed (no tumor, yay!). That's the great news... all necrosis. And, very similar to the surgery Steph had a few years ago.

We thought everything was going really well, as I was checked out of the hospital on Dec 19. I was about to have Christmas dinner and gift exchange with my family on Weds Dec 21 at about 7:45pm at my sister in law's house, when suddenly I decided I should lay down first - which is totally weird for me. So I went upstairs to lay down for a moment with a growing band of headache around my head. Within about and hour and a half, I couldn't walk, I had a monster headache, I couldn't look at any light (aversion), the room was spinning uncontrollably, I was throwing up (from my head, not nausea in my belly), and I was in ER at around 10:30pm with the surgeon who had performed the first surgery, Dr Patel, calling ER, telling them to take me right away, get me CTed and prep the OR. He IS an angel and he is spectacular. By 1:45am I was under anesthesia on the OR table getting another 5 hour surgery to stop bleeding and get Platelets under control (they were down to 55,000 which shouldn't be considered too low at all, but it all played into the bigger picture, I think). He sat with Mark talking another 15 minutes after ER surgery was over at 7am-ish on Thurs morning. He was dog tired, as was Mark, but I had made it through. I was in ICU for 3 days.

Then I was moved up to a regular room on the 3rd floor. They kept me there for 12 days, watching me so that it didn't happen again… I was in hospital for Christmas and New Year's Eve. I didn't care AT ALL… whatever the doctors (neurosurgeons) wanted, the doctors got. They stopped in and talked to me every day. I was very well watched and cared for. Oh, and believe me, you CANNOT sleep or get any rest in a hospital. Hahaha. 12 days total.

We were watching for healing and clotting of the area. I was CTed every other day to keep an eye on the area of surgery, and when my Platelets have fallen below 100,000, transfusions have been given. Platelets for me seem to fall because 1. the clinical trial for TDM1 I go to in Denver can cause that in some folks, and 2. because I have had high dose (IMRT) radiation to that area, twice, causing it to be a bugger to heal… and the 4th ventricle in the brain was not happy at all.

I was finally sent home on Jan 2… hallelujah! And I am just taking it slow and low. My Frankenstein scar in the back is about 4 inches long, and the neurosurgeon is not nearly as bad a barber as he said he was… We are on a one month watch/monitor for healing. The double radiation to the area makes it heal much slower. I am now in the hands of my local Oncologist who monitors my Platelets every other day to see if I need an transfusion, and if so, we send me to the hospital across the street where I get them transfused, until the one month is up and we know I am healed. One month will be up this Friday.

My platelets have not been as high above 100,000 as they had been… they have actually hovered around 85-90,000 for the last week. I am not transfused with 2 bags anymore as I had been in the hospital, just one bag now that I am an outpatient.

So, I am doing extremely well, I am glad to be healing, and that the "offensive material" is out of the brain! The only conundrum at this point is: 1. am I becoming 'refractory' to the Platelets? That can happen when your bone marrow starts to create antibodies that don't play well with the transfused Platelets, and it's not reversible… or 2. is it just a product of TDM1 causing my Platelets to drop a little as they are inclined to do? I did fly in and out of Denver on Monday Jan 9 to get my TDM1 treatment… or 3. is it a combination of the two?

That is a question for the ages that may not be easy to answer, but we know I am healing and it should NOT ever happen again… so there you have it.

That's where I've been... kinda quiet and had a few things on my mind, pun intended...

[Gerri]

Wow Brenda - I am speechless! The only thing I must say is that you obviously survived this ordeal with all your crucial brain matter intact! Your message was well written and so informative.

You are a champion of champions! My best wishes to you as you continue to heal. You go girl!!!

[hutchibk]

Thanks Gerri! Yes, no gray matter was touched... all the surgery was really close to the surface. We got lucky! I know it made me more anal retentive (haha) and maybe even a little smarter. Not. Ha.

[michka]

Just a little brain surgery!!!! Brenda, what a terrifying story. Like Gerry I'll add a WOW! I am happy all this is behind you now. I hope you feel better and better every day. It's a good thing you were able to go to Denver. Michka

[chrisy]

Brenda,
As you know I've been following you closely on all this. I think you are definitely a little smarter, if that was possible.

I wouldnt be surprised if the plates is a combination of the transfusions and tdm1. On my long tdm1 ride eventually it took quite a toll on my platelets and only now, over 7 monts after stopping, are they flirting with "normal" levels - and not even consistently there. Good that you are being monitored closely.

Oh. I got some of those chocolate "coins of the world" packs in my stocking at Christmas and I saved one that should be just the right size for your Mountain Charlie hole in the head patch! Let me know when you're ready, but you better hurry before my chocoholic husband finds it

[karen z]

Brenda,
Most people are busy during the holidays but, all I can say, is ........unbelievable (as well as I am also speechless). So glad you are finally home and now get a chance to relax and sleep. Your spirit, as ever, is amazing and you are one super strong gal. Take it as easy as you can and enjoy being home.
Love,
karen z

[ElaineM]

Wow !! What a scary experience you had !! You certainly had an unusual holiday season to say the least !!
I was just wondering how you were yesterday and then you came by and shared your experience.
You are certainly a strong, determined woman !! I am amazed you are still able to travel to Denver for your
T DM1 treatments.
Continue to take good care of yourself. I have my fingers crossed for you. Blessings of peace and good health in 2012 and beyond.

[Paty]

Brenda,
Great to hear from you. Wishing you reach Friday with no complications so the health incidents do not happen again. So sorry you had to spend the Holidays in hospital, but it doesn't matter as far as you are ok. I am sure there will be many more opportunities to celebrate. Love you and i send you a big and stong hug.

[Barbara H.]

Hi Brenda,
I am so sorry that you had to go through this. I received my stage 4 diagnoses with a 3cm tumor to my left prefrontal cortex in May, 2004. I subsequently needed two surgeries for radiation necroses as a result of the stereotactic radiation I received. This was no piece of cake, and I can certainly relate to your statement about getting no rest in hospitals. I stayed awake all night listening to the chatter in the hall, and couldn't wait to get home. I was also on T-DM1 for 2 years. I am sure that all of this will resolve and become an unfortunate memory. I am wishing you the best with your T-DM1 trial, and my thoughts continue to be with you.
Kind regards,
Barbara H.

[hutchibk]

Awww, ya'll are so nice. Thanks so much! Just wanted to let all know where I had been for almost a month. Seems like I was a tad bit busy, heh heh. But all is well now we believe, and Steph knows a lot about it too, she's been there.

Barbara, you too seem to know something about it as well. Chrisy, I will hope that my platelets keep steady now, low but steady.

Again, thanks all, and Go Texans, oops, that'll make someone mad. ; )

[Rich66]

Amazing with all that you were able to fly to Denver. Yer a tuff one.

[Becky]

Ahh darling girl. I am happy you are on the road to recovery from this scary event. Andddd, that you have such a great attitude about the whole event too. I am thinking and praying for you.

[Sheila]

Glad to see you posting again Brenda....now lay off the jello shots and get those platelets going....I'd give ya some, but mine are not exactly stellar....love that you have such a positive and humorous outlook....thats what makes you a true "B"

[Mtngrl]

Amazing story. Thank you for letting us know. Keep healing!

[dawny]

WoW, you have been thru the ringer! I hope you just feel better and better now, you deserve it.

Dawn

[Soccermom]

Brenda,
Wish I could think of something witty but I simply can't
As everyone has already stated you are one helluva warrior! You amaze me.. You make me laugh and smile.. AND it's obvious your "grey matter" is still far superior than most peoples!!!
Love you, appreciate you and will continue to keep you in my prayers!

Marcia

[Ceesun]

Brenda, Sending along my best wishes and prayers for an easier ride from this moment on. You have always been and continue to be an inspiration to me. Hugs, Ceesun

[Patb]

Brenda
I have always said when the wind changes we adjust
our sails, you are now the captain of the seas.
What a trip. Take care and you have my prayers
patb

[Mary Jo]

Wow....what a read that was. I, like the rest, am so thankful you are on the mend. You surely don't lead a boring life, do you? Obviously you are here for a reason. You just keep going and encouraging all those around you. How blessed we, and everyone else who knows you, are.

Prayers for complete healing. Hugs and much love.

Mary Jo

[sassy]

And here I thought you were probably jamming with the rock stars!

You are a rock star!