Just a little brain surgery...
 

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...

Re: Just a little brain surgery...
 

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!!!

Re: Just a little brain surgery...
 

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.

Re: Just a little brain surgery...
 

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

Re: Just a little brain surgery...
 

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

Re: Just a little brain surgery...
 

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

Re: Just a little brain surgery...
 

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.

Re: Just a little brain surgery...
 

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.

Re: Just a little brain surgery...
 

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.

Re: Just a little brain surgery...
 

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. ; )

Re: Just a little brain surgery...
 

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

Re: Just a little brain surgery...
 

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.

Re: Just a little brain surgery...
 

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"

Re: Just a little brain surgery...
 

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

Re: Just a little brain surgery...
 

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

Dawn

Re: Just a little brain surgery...
 

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

Re: Just a little brain surgery...
 

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

Re: Just a little brain surgery...
 

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

Re: Just a little brain surgery...
 

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

Re: Just a little brain surgery...
 

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

You are a rock star!

Re: Just a little brain surgery...
 

Praying that you'll be fully mended soon with headaches and brain mets finally behind you. From one craniotomy survivor to another -- cancer sucks!! Joan

Re: Just a little brain surgery...
 

All you chickadees, thanks for your thoughts! I will keep on keeping on, for sure... Just wanted to let you know where I've been and maybe, just maybe, there will be something in that story that others can learn from. I think the double radiation to that area, is a good starting point. The second time it was radiated was because the trial doc in San Antonio (who I DIDN'T go to, I went to Denver instead. They ROCK in Denver by the way) thought it was tumor and used a questionable MRI spectroscopy as an additional tool. We didn't believe it to be tumor at all (and we were right), but out of an abundance of caution, we re-radiated it, not knowing that it might lead to necrotic spread.

As I said, I hope there is something in this story for someone to take something from.

Re: Just a little brain surgery...
 

Brenda - you have just rewritten "The Perils of Pauline" squared! Tie you to the RR tracks? No problem - it is the train that will take a beating ...

Live and learn, live and learn. If we all knew now what we should have known a couple of years ago, things could be different.

Let's hope all will settle now and forever with this brain surgery. You know I got the infernal cerebral fluid leak and they had to go in again and fix that - but it was not due to the surgery cavity, just that the closure of my sub-scalp did not hold.

I did NOT put up with the chatter in the hall/nurses station. Closed my door and asked the staff to "keep it down, so patients may rest." After just five days I was almost beside myself from sleep deficit, can't imagine 12 nights!

Re: Just a little brain surgery...
 

Brenda, My jaw actually dropped reading your post. You are amazing, I need some of your bravery! You really are an inspiration and thank you for letting us know that its possible to come thru all of that. Very best wishes for a speedy recovery.

Re: Just a little brain surgery...
 

Oh, I didn't put up with the hallway chatter at all. I had the curtain pulled and the door closed. But at night, they had to come in to check my breathing, pulse and temp every 2 hours. And to hook me up to my liquid antibiotic, based on my surgery time, which ended up falling at 4am... so no sleep in the hospital for me.

I knew that about yours, Steph... and I hoped I could avoid it. Well, so I did, I took the other way around and decided to even make it scarier. Heh heh heh. Yikes!

Re: Just a little brain surgery...
 

You are an inspiration.

Re: Just a little brain surgery...
 

Wow Brenda what a scary experience for you and one you'll remember I'm sure, sending good thoughts for your continued good healing!

Re: Just a little brain surgery...
 

I learned hope is really endless!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Thank you Brenda for keeping us up to date! what an awesome out come. God is good all the time!

Re: Just a little brain surgery...
 

You are an amazing woman, Brenda. Glad to hear from you.

Amelia

Re: Just a little brain surgery...
 

Wow, every time I think I've heard it all, something new crops up to take my breath away! How scary to have gone through all of that and yet here you are sounding amazing and humor fully in tact :) I am on tdm1 as well and my platelets have been dropping. My onc called the study to see what the cut off is (75,000) to be able to have chemo. I was just above that and hope to try and stay there! But its good to know about others who are having this same effect from tdm1.

I also have a "blob" on my brain showing up, but not showing up in the typical way a cancer does- its remained stable and has not grown and I have no symptoms. New scans are scheduled in a week and we will see.

So yes, thanks for all of the insight, I can glean a lot of info from your story! You are a true warrior and I am inspired by you and your story. I wish you well on your healing and recovery!

Re: Just a little brain surgery...
 

Gosh Brenda
Just got home from being in hospital myself for a week again and read your post.
What a brave and inspiring woman you are! Not only brain surgery but a trip for T-DM1.You have always inspired me from joining the board and you continue to do so.
One thing that has become very clear to me being in a ward of very ill ppl with a variety of cancers is that whilst bc is c**p compared to other tumours there are many more treatment options available for us!
Soon I believe we will have the tools to keep the beast at bay!

Will remember your post next time I feel wimpy!
Hugs
Ellie

Re: Just a little brain surgery...
 

Just adding my "wow" to the list. You are a great example of keeping the faith, no matter what!

Re: Just a little brain surgery...
 

Yeah, Brenda - they sure do come in and check vitals, etc all the time day and night! I seemed to get a little used to that routine and asked my night nurse to be as quiet as possible when she came in. They would try, so that was nice.

A double dose of brain surgery IS the pits. But not painful, at least mine wasn't. Probably the least painful procedure I have had so far!

UGH! but glad you're okay now!Re: Just a little brain surgery...
 

Yowze, Brenda!
There are NO WORDS, I'm just so glad that all of that
is behind you, and more so, so so glad you are one the mend.
You are an amazing woman, a total warrior.
And so thrilled that you were able to get your TDM1 - just hope it doesn't create complications for you.

Here's to 2012 getting better and better and better for you!

(Mine has started of a little crummy - Halaven stopped working somewhere between week9 - week18, so I've switched treatments again. just need something to hold me over til Pertuzumab is approved. and then there's the matter of my repeat brain mri to look at a suspicious spot, discovered 8 weeks ago, near the one that I had novalis'd in summer '10...crossing fingers,toes,eyes,nose)

Keep the Faith~
Jessica

Dx-5/17/02 - 33 yo; Stage IV
L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.

Re: Just a little brain surgery...
 

Hey, Hucklebuck! I have been off the boards for a week or so due to the death of my Pop. I was shocked to read your newest saga. So this was the same pesky issue that got you kicked from doing TDM-1 in San Antonio? Major crap on a crap stick!

Ya know, Hutch, I beginning to think you are just trying to get your signature to take up the entire page..... :)

Re: Just a little brain surgery...
 

Oh my gosh Brenda I am just now reading this.

My heart was in my stomache while reading. I am so glad that you are doing so well.

Sending good vibes and prayers for your recovery.

Re: Just a little brain surgery...
 

Hey there, Hucklebuck! I hope you're having a good day. Please accept my cyber hug. You're something else, sugar. Love ya, Bill

Re: Just a little brain surgery...
 

Thanks again, ya'll. Wonderful words from wonderful folks! Ha ha Laurel, very funny! (and so very sorry to hear about your dad).

Steph, it is true, very un-painful, I have to say! Nerves are trying to knit together, etc, so I get the occasional ping of 1 second pain here or there, but it only happens 3 or 4 times a day.

JML and Sheila, I so wish that Halaven was holding folks... c'mon Pertuzamab and FDA, HURRY!

Re: Just a little brain surgery...
 

Brenda, you are my hero. I am speechless-ish. Eyes tearing and so glad you are on the mend. Don't have any platelet info but like Rich, I can't believe you got on a plane. Way to be a warrior. You just snapped me out of my scanxiety. Petscan-shmetscan. Sending love. Flori

Re: Just a little brain surgery...
 

I so wonder that some publisher passing thru these woods hasn't snatched you up and demanded that you write your story intertwinned with your amazing adventures. I just see me watching your story on TV with timeouts for tears and laughter. I didn't think you & your story could become even more amazing.....but, you have.
Here's to better days and more laughter.