Living It Up!

It was a good day. Well as good as it gets given my situation. I don't want to be too much of a Pollyanna. My prognosis hasn't changed. I just had a really nice day. No appointments (radiation finished yesterday), a couple of phone calls to make appointments went according to plan. Monday will be a big day with appointments with my psychologist, the neurosurgery nurse practitioner (taking out stitches) and my next dose of chemo. Back to today though. It was a beautiful day, we got up and went for a 2 mile trot. Then we headed over to Sausalito with the dog and had a yummy lunch at FISH. Then we walked over to the Heath Ceramics (which I've been meaning to do for YEARS) and treated myself to some of the most beautiful things! I swear my simple dinner of quinoa, spicy tofu skins and veggies tasted better than ever thanks to my new dishes. Back home and I had a relaxing afternoon capped off with a short trot with Red.

Less Hope Not Hopeless

Warning:  This is a tough post.  I usually can spin things to the most positive, but things are rough.  I should also warn you that there may be things that are just TMI, sorry.

So there is a lot to tell and I'll try to keep it relatively concise here.  You want more details, shoot me an email (I can send you the long version).  Went to the ER on Tuesday because I didn't feel like I was completely emptying my bladder.  After a day of scans and sitting around I left with a catheter and the news that my cancer is dotting my spinal cord in so many places they have no idea where to start to try to alleviate my symptoms.  Fast forward a day and the radiation oncologist has been convinced by my medical oncologist to try radiating the spots most likely to be causing my problems.  After talking through the side effects (sore throat and maybe some diarrhea) it seemed like while it may not do anything, the downsides aren't too bad, so we're going ahead.  I will go through a 5 day cycle of radiation treatments to parts of my spine.  Hopefully it does some good.  Good would mean my shoulder will hurt less and I will regain some of the sensation I've lost.  Fingers crossed.

Thursday Keith and I saw my medical oncologist.  It was depressing.  We are getting to the point where  options are getting limited and my cancer is getting aggressive.  First, good news- my body is still clear of cancer.  I had a scan (probably wasteful healthcare spending, but...) on Wednesday and there wasn't evidence of cancer.  The fact is though, there is cancer growing like wildfire in my central nervous system.  It is "studding" my spinal cord in more places than they can count and there is evidence of more growing back in my fucking brain!  Fuck, fuck, fuck!  Now, hopefully the intrathecal chemo will work.... my oncologist isn't really optimistic on that, but it is better than nothing.  Depending on how I'm feeling next week, I'll either get another dose of chemo on Friday or we'll talk about switching to an oral chemo (Xeloda) that shows promise for crossing the blood brain barrier.  The hope at this point is that between radiation and the chemo that we can slow the train down a bit and I can get a rally (or at least slow the onset of symptoms).  Right now I have two main goals; learn how to self catheterize (hopefully happening tomorrow) and stay the fucking hell away from the ER for the next bit. 

Catheter update:  Saturday was a cluster-fuck trying to get my catheter out and get training on intermittent catheterization of myself.  I'm proud to say I took a stand.  The catheter was going to come out yesterday no matter what, and I just kept at it until it did.  You wouldn't believe the trips and turns, but I got it done.  I'm free of the foley catheter, peeing some on my own and doing some self catheterization (strangely simple really - after all the fuss) to make sure I'm emptying everything.  The best part is that I am back walking the dog and taking luxurious soaks in the tub.  There were a lot of folks yesterday who just didn't understand how important it was that I not have to wait until sometime Monday to deal with this.  In the end persistence, determination and some $$ got it done.

I hate to say it, but it is also time for me to seriously get my shit in order.  I don't know quite where to start, but it needs to happen.  The control freak part of me wants to tie up as many little loose ends as possible.  Can't be any harm in being prepared!

Home.

Glad to be home.  No other news.  Just very pleased to have had all that go as smoothly as it did.  Thanks for the love and support.

k & e

flowin'

The cisternogram showed good enough flow and I just finished getting my first dose of intrathecal depocyt.  So far so good.  Certainly takes a lot less time than regular chemo- it only took 4 minutes.  Of course it was only 5 milliliters.  Now I just need to take it easy and not fall into a coma.  Keith is already driving me nuts checking for neurotoxicities and giving me neuro-function tests.  The doctors say the problems (if any) would arrive within the first several hours.  If all goes well, I should be gettting out of here tomorrow.

I had a meltdown in the hallway while waiting for transport back to my room from my second set of cisternogram pictures.  Between lack of sleep, and nerves, my mind got away from me as I was waiting over 45 minutes for transport.  It was great to arrive at my room to see Keith and to find that my oncologist was already here waiting for me to arrive to administer the chemo.  whew.  Here's hoping for a restful cancer killing night.

So Far Things are Flowing!

So I got in for my cisternogram (aka a flow study).  My neurosurgeon's resident (or is it fellow) came and tortured me by ripping off the dressing and pushing around on the surgical site.  I am confident in his talent as a neurosurgeon, but he sure isn't delicate or gentle when the patient is awake (I should have dosed up on pain killers ahead of time!).  Then they injected a radioactive solution (technetium).

As a geeky aside - I just looked at the wikipedia page for technetium.  It was first "artificial" (man made) element.  They discovered it on foil removed from the cyclotron at Lawrence Berkeley Labs (LBL).  Okey dokey, enough of that.

After the injection (essentially painless - 30 gauge needle), they took a series of 5 minute long "pictures" to see if the solution was getting distributed evenly throughout my cerbral spinal fluid (CSF).  This was pretty relaxing, I think I got a couple of cat naps in (not much sleep last night - more on that later).  At the end they told me that things were looking good, they just wanted me back down in a couple hours for another set of pictures after things had set for a while.  If this set looks good, then the oncologist has the go ahead for chemo and he'll administer it to me this afternoon.  I'll be watched overnight and head home tomorrow!  Fingers crossed for that best case scenario!!

So, I have to tell you a little about last night.  The woman I was sharing a room with came in from another hospital late in the day and seemed ok until night time came.  She was a loud sleeper, lots of unpredictable snoring/choking/loud cries, etc and she had the TV on loud (turning it down or off woke her up).  Clearly she was in a bad way, and I hope she's doing better today.  As for me, I managed to sleep only until about 2am at which point I just couldn't do it anymore (even with my good ear smashed on the pillow).  I went to the nurses station and asked for ear plugs.  Thankfully, they took pity on me and immediately moved me to a single room (with direction to not mention the room change, because they get lots of requests that they can't fill).

In other news, I have had GREAT nurses here in the neurosurgery unit.  I feel very well cared for, by people who are smart, caring and good at their jobs.  It probably sounds flowery, but my nurses, their assistants, my doctors (mostly- sorry neurosurgeons; you don't get good marks from me this time) are just great.  They know what they're doing, they care about how I'm doing, they care that I understand what is going on...It really makes such a huge difference when you have confidence in the people in control of things.

I'd flip it, but it barely matters.

I'll post a quick update before I go to bed.  I'd say sleep, but that doesn't really happen much here at the hospital.  Thanks for all the support!!

insertion complete

I just brought E a quesadilla from the cafe downstairs. She approves. Hardest part of the procedure (according to her at least) was waiting around to get a room afterwards. Still no firm departure plans, but it's definitely sounding like a longer stay than originally anticipated. They need to do some flow tests to make sure the port is cool, but there needs to be some healing time prior to that. E is still hoping to get a dose of chemo ASAP. The sharpie mark is another temporary tattoo to add to her "cryptic neurosurgeon marking" collection. On to the next steps....more info as it becomes available. thanks for all the support and good thoughts. Nice to know we're not really doing this alone.

in recovery

I'm holding her hand and she feels fine. head a little uncomfortable. talking and alert. says hello. there's a snafu on where she goes next.

keith

report

just got a call that she's doing ok and will be going to recovery in a half hour or so. more updates as they become available.
keith

Tentative Plans

So here's a quick update on the plan... Thursday morning (hopefully) they'll do the surgery to insert the ommaya reservoir. The surgery itself takes 20 minutes, but it'll be a couple hours when you count the ride down to pre-op and then recovery... The neurosurgeons don't want to give chemo right away, so Friday and Saturday I'll be hanging around healing up. I'll probably also get some scans done to check on the port and the flow of the cerebral spinal fluid (csf) to be sure the chemo can get everywhere I need it. Finally on Saturday or more likely Sunday I'll finally get chemo. I'll be getting a chemo called depocyt. The doc went through all the scary possible side effects, confusion, dizziness, loss of balance and encephalopathy (a very general term for your brain being FUCKED UP. In the end these things are pretty unlikely and my other options are even less tempting, so we are going ahead with all this. So after all that hopefully I'll be home on Sunday or Monday at the latest. Not ideal, but I guess I'll take it. Pls excuse all typos, I wrote this post on my phone and didn't have my trusty proof reader (Keith).

Moving' On Up.

After reporting feeling more numbness in my feet, legs, arm, really over a lot of my body my medical oncologist and neurosurgeon have decided to push up my ommaya reservoir insertion. I got a call a couple hours ago telling me to make my way to the ER. They'll admit me tonight, get me setup with IV steroids to try to knock back the swelling causing this numbness. I'll get scans tomorrow, surgery Thursday, chemo Thursday (I think) and then ill get discharged Friday. We'll see how that all goes... This is just more evidence that I shouldn't try to plan for things. I bought my mom a plane ticket so she could be here to help Keith out with the animals/house stuff when I had surgery. Oh well, this way I get to spend more time with her while I recuperate. Before all this broke out, I spent a couple hours cleaning out my old classroom. I filled several bins with paper. It was very cleansing. Normally I'd spend more time going through it and organizing it, but not so much this time. I think things are pretty well set now, I've still got a couple things that need to get back to school, but otherwise I'm set! The biggest bummer of the day is that with this schedule change, I won't be at graduation tomorrow. Graduation is such a great chance to give a hug and an encouraging word to the seniors. I was planning on going, but alas it is not to be. I'll report more soon. Wish us luck!

Disney to Spinal Tap

Click on the photo for a better look.

Keith and I had a great weekend in the LA area.  We got in Friday, picked up our car and headed over to the Getty Museum.  HOLY COW, it is just gorgeous, from the building itself to the art inside to the gardens and the views on the outside.  It's breath taking!  After the Getty we caught up with some dear friends for dinner and fro-yo.  Then it was off to Disney to check in and SLEEP.

See the creepy animatric
Indiana Jones and
the giant boulder?
Sorry it's a little dark.

We really enjoyed both Disneyland and California Adventure, but...the best part was the Cars Land preview.  They've done some amazing things there.  Can't tell you any details, sorry.  Probably the most interesting thing after Cars Land was getting stuck in the Indiana Jones ride for a good 20 minutes next to my claustrophobic husband.  Keith kept his cool and eventually we were lead out by a couple of the workers, I just hated being stuck under the creepy animatronic Harrison Ford for so long.

We headed home later on Sunday to our furry friends.  As usual they were in great shape, but happy to see us.  Today I walked the dog, paid some bills, made a couple stupidly long phone calls to places like the insurance company (no big issues, just a lot of time on hold) and then Keith and I were off to San Francisco so I could get my lumbar puncture.  Lots of waiting for the doctor, but she was great.  The focus of her practice is central nervous system mets, so she does the lumbar punctures for all the oncologists.  She did a lot of talking, explaining that this test may give us a false negative.  She encouraged me to take part in a clinical trial- all I had to do was let her take an extra couple of milliliters of spinal fluid with which they'll do an even more sensitive test for cancer cells.  I geeked out a little about the trial.  Feel free to skip this next part:

Note: this is how it was explained to me, I'm assuming it is oversimplified, but after a quick look on the internet I couldn't find much more detail (often doctor's simplify in the interest of time).  I apologize in advance for any glitches in my explanations.

The normal way they look for cancer cells in your CSF (cerebral spinal fluid) is to take the fluid, spin it in a centrifuge, take the gunk at the bottom of the tube and smear it on a slide, and look at the slide to check for cancer cells.

The trial takes a much smaller sample and adds an antibody that bonds to the surface of cancer cells.  Not only does this antibody bond to cancer cells, but it's magnetic.  It can pull any cancer cells in the sample out with a magnet!  There is more to it than just that, but you get the idea.  Instead of just searching for cancer in a mix of a bunch of different cells, they're trying to concentrate cancer cells prior to looking for them.

Anyway, I signed up for that trial, but all that means is that the doctor took a little extra fluid.  Technically she can't tell me the results, but....my treatment plan would change depending on the results. This could really help me out another way too:  If my regular test comes back negative, the normal course of action would be to wait three weeks and do another spinal tap.  (Something I'd just assume avoid if possible).  The trial would make another tap unnecessary.

Sorry about that diversion.  I'm home from the lumbar puncture, laying flat on my back trying to avoid getting a headache (the result of having 20 milliliters of CSF removed, so I'll be laying low for a bit here).  I'm feeling pretty good.  My shoulder is getting more painful, but I'm still trying to avoid steroids for as long as possible.  I'll probably break down soon, but for now I'm hanging in.

Some more weekend photos:

Autopia - that's me in the background.

Lights in California Adventure right before the World of Color Show.

A gorgeous view from the Getty.