I had brain surgery a week ago, WTF!?!?

I don't have much to report and that's a good thing. I am feeling good (thanks to good protoplasm according to my neurologist). I can't believe a week ago at this time they had my skull opened up! I'm off all pain meds, weening off the steroids (the sooner the better, they make me feel like I have had 10 cups of coffee) and other than a tight feeling and a crazy scar (real halloween shit) I'm doing fine.

I will admit that while physically I'm doing great, I haven't really wrapped my brain around what has happened yet. I don't know when it will sink in or if it ever will (do I want it too?). This whole thing is just completely surreal. It's like I just lost a week. Feeling as normal as I do doesn't help (not that I'm complaining!). The reality is maybe it's just easier for it not to sink in. My diagnosis is a fucking depressing thing and thinking about it too much doesn't do any good or change a thing.

The one thing this has made me very aware of is the importance of being as healthy as possible at all times. While my neurosurgeon's comment about good protoplasm was funny, it is the truth of the matter. I went in to this whole thing doing pretty well. I eat pretty healthy, I am not too skinny or too fat (yes, of course I'd love to lose a few pounds, but I've got bigger fish to fry and yummy food to enjoy!) and I'm pretty active. All that stuff made this latest crapfest a hell of a lot easier to come back from. I say this and I'm not preaching about running or going to the gym, I'm just saying I can't afford to be a couch potato. It is just a matter of time for this kind of shit to happen again and I want to be in decent shape when it happens. So, I'm walking at least 3 miles a day (thanks to Red, my mom and Keith for always keeping me company). Right now, I'm doing it in 1 mile increments, but I don't think it will be too long before I am going for longer stretches. I feel like I could do even more, but am aware that there are some things to be careful off (lifting heavy things, bending over, etc).

So for now, I'm just sort of relaxing and "recovering". I'm thinking I'll be ready to go back to work part time sometime next week. I don't have any doctor appointments (other than stitch removal with a nurse practitioner) until mid October. At that point I'll go back on Herceptin and get another brain scan before the radiation oncologist weighs in on what comes next. It sounds like there will be some kind of radiation in my future to "mop up" anything that got left behind. Brain lesions are tricky because most chemotherapies and targeted therapies (like Herceptin and Tykerb) don't make it through the blood brain barrier. Urgh!

Home Again.

Thanks for all the comments folks. The support is very much appreciated.

They sent me home yesterday around 11am. I was a little worried about coming home, but it has been great! Sleeping in my own bed last night was amazing! It is still really tricky to get comfy, but not having interruptions every couple hours was wonderful. Last night was the first night no one woke me up to take blood between 3-5am, my least favorite interruption, other than the crazy loud code blue announcements followed by lots of running to the elevator. They want you to rest in the hospital, but it is next to impossible!

So I'm home, weaning myself off some of my meds (pain meds, muscle relaxer, steroids) and trying to keep my noshing under control (steroids make me hyper and ready to eat ALL THE TIME). I'm trying to get back into the swing of walking again. It is amazing how easy it is for me to get wiped out. I can do a mile or so walk, but then I need a break.

On a separate note, I must say this whole thing is so surreal- I am having a hard time wrapping my head (no pun intended) around what has happened in the last week. I went from having a great set of scans, to a horrible headache, to a possible brain tumor and an ambulance ride across the Bay Bridge, to brain surgery, to home again in under a week. Wowza! I will say I feel lucky that things went so quickly and that we live so close to UCSF. I am very confident that I got the best care possible (nice that I'm not haunted by "what if's"). I know I said this before, but everyone I dealt with there was so helpful, professional and kind. More on some of the quirkier personalities to come :).

Next steps for me...
First, I've got to get Keith to get some rest, poor guy is completely exhausted. My mom is coming out tomorrow, so that should help. I don't need too much help right now but I can't drive for a bit and I can't lift anything more than 5 lbs.

Second, get in to get my stitches out. I've got to call tomorrow and get an appointment with the surgeon's nurse practitioner for the end of the week.

Third, get brave and wash my head. I need to soak off some of the glue, blood, etc. They told me I could shampoo as of yesterday but I'm not ready!! I may chicken out on this part and just wait until after getting the stitches out. Right now, a hood does a nice comfortable job of hiding my crazy wound (too bad Halloween is so far off, because I've got a GREAT look right now!).

Fourth, tie up some loose ends at work. I've decided that as much as I like working, there is no reason for me to rush back to work. Between follow-up appointments from surgery, the inevitable radiation treatment that will follow, it just makes sense to take some time off.

As if this little tumor issue wasn't enough to worry about, Keith's mom's trip down to the Mayo Clinic happened on Friday. Sounds like the verdict is that Mayo wouldn't change anything about her treatment at this point, and the Duluth doctors are doing the right thing. It's great to know that she's been looked over so thoroughly, and we'll continue to hope for her improvement to continue (albeit slowly).

Report from the front line

So this update is from the horses mouth so to speak (it is Eileen talking). I am in awe that 48 hrs ago I was on the operating table with people sucking cancer out of my brain. So strange I don't even know how to process the thought. I haven't had any bad pain, just can't seem to get comfy. I have a string of sutures from above my left ear down behind the ear and I don't want to put pressure on them, so it is a bit of positional nightmare to get comfy (unless I am thoroughly looped on meds - which happens).

My care here at UCSF has been amazing! I don't have much to bitch about when it comes to the folks here (and normally I'd find stuff to complain about!). I have seen all sorts of folks, neurologists, neurosurgeons, pharmacists, physical therapists, occupational therapists, Neurosurgery ICU nurses (yes, they're that specialized and I think it makes it better!), social workers, folks to help me figure out how to get on disability while I recover, more nurses, patient care advocates, gurney rollers, MRI techs, food delivery folk, and more. Everyone has been pleasant, helpful and professional (even the poor ICU nurses dealing with my "impulsive neighbor" who kept trying to get up and rip out his IVs were gentle and kind -when I was ready to get up and scold him).

More later....gotta rest. Looks like I might be getting outta here over the weekend sometime...

continuing to improve

Eileen was pleased to get rid of a few extra lines yesterday and this morning. She's now much more mobile. It's still a challenge to get comfortable, and I think she's pretty resigned to the discomfort (thankfully, it's not really pain) for a while. We're both still processing the fact that someone was touching her brain only a couple days ago. This is all extremely surreal!

out of icu

Eileen was moved out of icu and is doing pretty well. she's been sitting up most of the day (it's somewhat challenging to find a comfortable position). took a short walk down the hall. talked to the surgeon and he says everything went well.

doing well

I arrived about 615am and Eileen was awake and talking. she had a decent night, though not much sleep. currently she is sitting up in a chair and just brushed her teeth! recovery seems to be on schedule.

quick update

I'm in the room with her. she's looking good. really looped but talking and can move everything. I won't update the blog again until tomorrow. thanks for all the good thoughts.

small update

they're closing. said she's ok. will take about an hour and then off to ICU for recovery. haven't gotten any details.

she's in surgery

hi, Keith here. playing the waiting game. Eileen is in surgery....they said 4-5 hours and we're approaching the halfway point. going in, we both are feeling very confident in the doctors here. the anesthesiologist made a comment that this is the best place in the world to have her surgery done. more as I know....

When a headache turns into brain surgery...

So I went into the ER on Sunday because I was having a terrible headache. It hurt so much it made me whimper it was so bad. After a call to my oncologist, I headed to the ER in Oakland (1 minute from our house), got some drugs, and a CT Scan. The CT Scan showed something suspicious and after consulting with docs here at UCSF I was transferred Sunday night. After a lot of drugs and neurologic tests (follow my finger with your eyes, etc) I finally had an MRI yesterday. The MRI showed a very distinct mass in on the left side of my cerebellum (back of your head). The mass is a little over an inch in diameter. Thankfully it is completely operable (not usually the case), so sometime in the next day or two they will cut open my skull and pop this bugger out! The word is that my headaches will disappear quite quickly and I'll be headed back home after a week or so and should be back feeling 100% after a month (give or take).

I just got finished talking to my oncologist (who I like more each time I see her). She pointed out that given the shittiness of the situation, I once again have the best possible condition, one lone metastasis, that is operable. It is helpful to see the sunnyside, because as usual it could definitely be worse.

One of the surgeons just came in to get me to sign some more paperwork (yes, I'll be donating my tumor to science - although I'm kinda sad not to be able to take it home in a jar) and to mark up the correct side of my head so they don't go cutting open the wrong place!?!? I guess that's a good thing, now if they can just remember to not to leave any tools behind before they sew me back up!

Please send all the positive vibes, prayers, whatever you do my way tomorrow. I've got a great surgeon on the case (he does several of this type of surgery every week). Surgery could be anytime from about 8:30am- who knows...All depends on what other emergent cases come through the doors. Since it is nothing by mouth after midnight, I'm sure hoping they can get me in as early as possible!!

p.s. apologies for any grammatical, spelling or other errors, I blame it on the brain tumor (and the fact that Keith isn't here to do his normal proof reading).

Good news, bad news (really pretty much good news)

I got a call from my oncologist at UCSF today, yeah I said it... she called me!! This never happens. Actually she left a message and I called her back. She was calling to give me the results of my ultrasound (which I already new, since I talked it over with the radiologist on Friday as she was doing it). She said she wanted to call because she was so excited that "they can't see anything!" It must be good news if your oncologist is so excited they have to call you! She also told me my CT scan was clear and that she presented my case to the 'tumor board' today and they decided I'm a good candidate for surgery. Before I have surgery though, I need an MRI (I figured as much). Thankfully I'm still on the trial, so without me doing anything I'm scheduled for an MRI next Monday (at a time that doesn't interfere with work at all- thanks to Irene the trial coordinator). After the MRI, I'll go see a surgeon and talk about what kind of surgery I need. I thought only a lumpectomy was on the table, but it sounds like it might be a mastectomy depending on the MRI. Honestly, this is one of those things where I'll do whatever they tell me is best. I'd rather not have a mastectomy if I can avoid it, but if that is what the experts tell me to do, I will do it. So far the experts have done a good job of keeping me going.

O.K., what is the bad news you ask...My oncologist wants me to stay on the trial until my surgery (more puking, more nausea and more diarrhea, yippee!). I have to say I took the news pretty well, since it was preceded by the good news of the scans. I think it is also easier to accept knowing there is an end in sight now. I'm not saying I won't be sick, but knowing that it is working and knowing that I'm not on it indefinitely make a huge difference psychologically. I'm figuring I have two more cycles now and I'm keeping my eyes on the prize!

and the waiting begins...

I went to work for a bit yesterday and then I hustled off to UCSF to get scanned. First up was my ultrasound. After waiting more than an hour (that office is chronically late, I don't know why I bother to show up on time at this point) they scanned me. It took quite a bit of looking around before it was confirmed by two different radiologists that they cannot find anything to measure! They can see an area where it looks like something was going on, but there's nothing left to see with an ultrasound. I suspect I will need an MRI soon (better resolution).

Then it was off to my CT scan. The particular scan I have been getting looks at my heart as well as the organs in the lower half of my body (Tykerb can cause heart damage in some folks). The problem with this kind of scan is that the contrast has to get pushed into you FAST! This means they need a big gauge IV. It hasn't been a problem in the past, but today there was a new tech...and my veins hide as soon as they sense the tech is nervous. She tried hard, but no luck. They finally called Eli (who I've renamed 'the vein whisperer') from across the street. He came in and got it started in one try (it was the 5th poke for me). It all seemed pretty good at that point, but not so fast; They pushed the contrast in and I knew right away something wasn't right... It turns out that some of the contrast leaked out of my vein. Thankfully enough went in to get the pictures, but I left there with a big bulge on the back of my hand (and three cold packs for my trip home).

It's nice to know the results of the ultrasound already, now I'm just waiting for the results of the CT scan along with the verdict from the tumor board. I will know more on Thursday. I expect there will be more tests before I know for sure what comes next. I'm hoping to at least be done with the trial. This high dose of Tykerb has been ROUGH! There is a lot of puking, lots of nausea followed by a serious case of the trots.

Thanks for all the good thoughts. We're hanging in and hoping for the best.

The news from Duluth is that Keith's mom continues to do "ok", but the neurologist now thinks a trip down to the Mayo Clinic is appropriate. That will happen in a couple more weeks. We're all very curious to learn if Mayo will discover anything different or if we just need to continue to persevere with patience.

Like my new 'school picture'? Maybe I'll sign the back and send them to some of you...