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