Friday, July 27, 2012

I thought...

...I'd never be leaving my house again before I died, but tonight I went down a ramp in my back yard and went to one of my favorite restaurants!  Thank you to the crew that built that ramp.  Keith put out a call and you stepped up within minutes, got it ready to use in 2 days, you are amazing!  Thank you.

I'd post pictures, but I'm too vain to accept what my face looks like at this point (steroids - which I need, cause some intense facial swelling).  I know I talk a lot about ice cream, but this is much more than what ice cream might cause.  I'll work on snapping something acceptable tomorrow (there will be another outing).  Red on the other hand has no shame so...

Tuesday, July 24, 2012

Today Brought Treats and a Great Nurse


Not much new to report.  We met with our new "managing nurse" today, she is GREAT, much more compatible with us.  After our one hospice meeting (with two people, but still just one appointment)  we had treats of all sorts

    a healthy fresh lunch was delivered to the doorstep then a great little visit from a dear friend from work a quick visit and amazing art from a former student a surprise delivery of a whole hell of a lot of ice cream - so if you're in the mood, come on by for some Fenton's - mmmmm.... 
    more touching and funny emails, cards, facebook posts, from friends (new and long lost) as well as more former students (really I count you all as friends too)
So thanks to all, you have no idea how much it really means to us during this most craptastic, unfair and fucked up time.  I'm thankful to report my noggin is still functional (knock on wood) and I'm not experiencing any dramatic increase in symptoms elsewhere.

Carved and painted by one very talented and dear young woman!

Saturday, July 21, 2012

Getting Hospiced

Holy cow getting hospice organized is an intense experience.  At the same time as my disease is progressing day by day we are seeing all sorts of folks trying to get my care organized.  There's lots of weeping and lots of processing and we're still catching up on the surrealness of it all.  It's hard....nearing impossible.

We have seen so many people I have lost count.  Thankfully, by and large they've been helpful and kind. The one I couldn't stand won't be back (not sure if she caught me in the wrong mood or what, but I can deal with most people- especially after years of teaching!  My advice to any hospice intake nurse - never talk to a newly signed up hospice patient about their chubby steroid face, suicide and dead patients when you are just meeting them - just be warm and supportive!).

Update on my condition...
I can't walk at all.  I'm bed or wheelchair bound.
I can't feel or move my legs.
I'm numb pretty much from my chest down.
I'm back to being fully deaf in my left ear.
So far the thinker is still good (thank goodness!)
My arms are weak and there is some numbness in my left arm (not new), but arms are still working.
My pain is well controlled.
My appetite is still good and I'm still enjoying food as always :).
I'm a little worried about my lungs, but I'm still breathin', just not kickin'!

Things are changing a little each day and not in the right direction, so who knows what tomorrow brings.  Fingers crossed it is ice cream, not more symptoms.

We have been treated to lots of visits from my family!  All my aunts have made it out here along with some uncles and even a cousin.  In some cases it had been years since we'd seen each other, so it has been really wonderful, and heartwarming to get a chance to catch up.

Keith and I and my mom are muddling through right now.  Things should get easier next week because we've hired some extra help to come in the morning to give Keith a bit of a respite.  They'll be someone here on the weekdays to help get me up and ready for the day, do some light chores and give Keith a chance to do something (get a break from this nightmare!).

On a happier note, thank you to everyone who has sent messages of support!  We're so lucky to have great friends- old, new, near and far.  I feel lucky to get to read these beautiful notes saying such nice things about me.

I really wish everyone had a chance to hear such amazing things about themselves, but geeze do I really have you all fooled!  I was a hard working teacher, who is amazingly lucky to have met the perfect and most wonderful man, watched too much garbage on the TV, liked to eat good food and could easily have turned into a crazy cat lady (thanks for keep a tight reign k).

To the local folks who have offered help, thank you!  It is often hard to know what we need, we're just trying to keep the wheels on the cart as it barrels down this very bumpy road.  Any emotional support is huge and any other help you can think of is appreciated- we probably won't know that we needed the help until after you do it!

Monday, July 16, 2012

Hospice

It is now official.  I had my first round of chemo on March 8, 2010 and after a crazy last 5 days I'm officially done with cancer treatments as of noon July 16th, 2012.  We have made the decision to stop treatments and start Hospice.  We don't know exactly what things will look like going forward, but I'll keep you posted as that becomes more clear.

To understand what is going on a little, let me give you a bit of a run down of the last week or so...Last Tuesday I was still walking the dog a couple miles with hiking poles and a slow pace, by Friday I was getting really weak in the legs, Saturday I fell down three times (left leg just giving out) and decided I needed a walker, Monday morning I can't really move either leg and the walker is pretty useless to me.  After talking with my oncologist it seems clear the chemo isn't working (simple test - are you better or worse than when you started chemo?  I am most definitely worse).  Even though the chemo is pretty easily tolerated it just doesn't make much sense to continue to put something toxic in me if it isn't doing its job.  I wish I had more options, but there isn't any other treatment that will help me.  I've had all the radiation that I can have.  I can try some other chemo, but the doctors concur that it wouldn't change my prognosis significantly.
This was not an easy decision at all.  There were (and still are) lots of tears flowing around here.  I'm still feeling good other than the whole not being able to walk.  The cancer is just progressing so fast.  Everyday I'm worse than the last and then when I compare where I was when I started chemo vs. where I am now it seems very clear the chemo is not getting ahead of the cancer.  It is now time to forget about fighting cancer and focus on me being comfortable and happy.

We are really drained and trying hard to process something that no one should have to process.


Here's my rant for today.  I'm working at moving from angry to peaceful, but I'm not there yet.  I'll work on a list of loves for next post (there is still a lot of that around, just hard to find it today).

FUCK THIS CANCER

FUCK BRCA2+ MUTATIONS

FUCK THE BLOOD BRAIN BARRIER

FUCK CHEMOS THAT DON'T WORK

FUCK KNOWING HOW YOU'RE GOING TO DIE

FUCK DYING BEFORE YOUR TIME

FUCK NOT BEING ABLE TO GROW OLD WITH THE LOVE OF MY LIFE




Wednesday, July 11, 2012

Do What Feels Good and Makes You Happy

The title is a quote from the new doctor on my team (my symptom management doctor).  The focus now is on keeping me comfortable.  I'm not stopping treatment, but I definitely have more symptoms from cancer and all the drugs I'm taking than I've ever had before.  My legs are ridiculously weak, even with all my walking I'm having trouble getting around.  If you see me, I'll probably have my hiking poles (and if not watch out!).  I take a while to get up from the seat and God forbid I have to get up from the floor... that takes a lot of work.  I'm pretty bummed about all that because I've worked so hard to stay pretty active and that's getting harder.  It isn't impossible and I'm still managing to get 2+ miles in each day, but I'm a lot slower lately.  I just don't know how much longer I can keep it up.  We asked the symptom management doctor if I should, for instance, try to strengthen my legs somehow, like maybe work them out.  He replied that if working out makes me happy, then go for it....but if it's never been a pleasure for me before, then don't.  Basically; only do things that make me feel good and feel happy.  Anyway, fingers crossed that things stabilize or even get a little better.


I have a pretty light appointment week (a nice change).  Other than my symptom management doc and an appointment at the DMV, I'm free!  That makes more time for catching up with friends and spending time with the family that has come to town.  It was sad to send my sister back east last night, but this afternoon, my mom, two aunts and an uncle arrived!  They're here for a little bit to visit us and do a little exploring in the Bay Area (tomorrow they're off to Muir Woods).  I haven't seen my aunts and uncle in so long, it is wonderful to have them here.



I finally took the plunge and got a handicap placard.  It isn't that I can't get around at all, but it sure will be nice to park close (and free street parking).  Haven't really put it to use yet, but am looking forward to it (especially at Whole Foods in Oakland - I am done hauling groceries up those fucking stairs!!).



I'm late reporting this (self-centered):  Several weeks ago Keith took a leave from work to hang with me (drive me to my many appointments, deal with the animals, take care of the house, take care of me, etc.).  The fact that this is even a possibility is a godsend.  We feel very lucky that he works at a GREAT place with so much support.  In fact, today his manager came by with a card FILLED with well wishes and generous gift certificates to our favorite spots.  All this shit is hard, but it would be so much harder if we didn't have such support and love.  Thank you!!


Saturday, July 7, 2012

Happy Four Chuly!

Monday was a little crazy.  We started off with a draining appointment with the psychologist.  I am not complaining about the draining part, that seems inevitable when it comes to those things.  She talked us through some stuff, cried through some stuff and gave some much needed advice.  Then it was across town to get stitches out; whoops we used dissolvable stitches, you didn't need to come in.  UGH!  At least it was the middle of our 3 appointments.  So we dorked around in the city, bought a hard drive and dropped it off at the Video Transfer Center so they could load a bunch of old home movies from Keith's family.  That was a project Keith kept meaning to do himself (for years), but it wasn't happening, so we got it happening by throwing a bit of $$ at it.  The results are WONDERFUL!  We should have done it years ago!  Then off for some Thai for lunch before going to get chemo into my brain.  Chemo was uneventful.

Tuesday we didn't have too much planned- a quick interview with a new cleaning person and then off to Cavallo Point for our luxurious little trip (a lovely gift from some parents at my school).  The interview with the new cleaning person went beautifully!  She seems like an absolute DREAM!  She said everything right and just seems like a genuine person I'd like to deal with.  Cavallo Point was beautiful and luxurious and very treatful.  It's a former military installation that's been totally redone and converted to a nice hotel complex at a beautiful spot right near the base of the Golden Gate Bridge, on the Marin side.  I took several long soaks in a giant bathtub in our room.  We walked the grounds and scoped out where to watch the SF fireworks show.  I was feeling pretty tired from the chemo but not too terribly affected.  Lots of naps while Keith plinked on his ukelele.  Later, we walked back down to the water's edge to watch the fireworks (spectacular!).  We were freezing by the end of it but warmed up nicely on the hike uphill to our room.  I'm more wobbly and my legs are weaker so I've been using hiking poles most of the time.  It's hard to know if the weakness/balance issue is from growing tumors, or a side effect of the previous radiation treatments, or it could be a side effect of my pain meds, and most definitely the steroids have something to do with it.  Also probably related to my meds is my continuing urinary issues.  I'm rockin' the poise pads these days (which is not fun but way better than a catheter and a leg bag).  Again, that could be due to meds, or due to tumors....we just don't know.  And frankly, there ain't much to be done about it at this point anyway.  Oh, and also speaking of steroids, my face is GIANT now (again, urgh!).  My reflection freaks me out.  Thank goodness Keith loves me anyway.  I hate being on steroids!!

My sister Meg arrived on Thursday night for a 5 day visit.  She's staying overnights at the cottage that my mom rented in Orinda (about 20 minutes from here).  It's great to have her around- she just made us a huge batch of mac-n-cheese for our freezer.  MMMmmmmmmm........

Back to the cleaning person, we liked her so much that we signed on to her roster and had our first clean yesterday.  She did a great job and we're both happy to have found someone we like and who is kind and a darn good cleaner to boot.  It's one less thing to be stressing about.

Next up: Monday I have an appointment with a symptom management doctor who comes highly recommended.  We're hoping he can evaluate my drug list and maybe make some adjustments so I'm more comfortable with less side effects.  I'm always a little nervous for a new doctor, but I think this will be a good addition to my team.