what now....

It's been a month since we lost Eileen.  It hasn't sunk in.  It's so unbelievable...so surreal... words escape me.  I ache.  I know things will get easier....I just need time.

I want to thank all of you who donated to UCSF in memory of Eileen.  By doing so, you are helping to fuck cancer, and that is definitely what needs to happen.

And thank you to all that have shared stories and memories of Eileen, both here and privately.  I can't express how appreciative I am.  Reading through them picks me up and gives me a smile, learning how she touched so many lives.

I'm motoring along, trying to stay busy.  Lots of things to tie up around the house.  I've started a blog over here to put my thoughts down.  Feel free to take a look.





...

If you would like to make a donation in Eileen's memory, and help fuck cancer, please consider donating to UCSF.  Eileen always received amazing care and had access to cutting edge clinical trials and treatments.  Her wish was for any donations to be made toward breast cancer research.

Here's what to do:


go to this UCSF link

-choose 'Choose a designation' under "MAKE A GIFT"
-choose 'other' and write "BREAST CANCER RESEARCH"
-under "WHAT TYPE OF GIFT WOULD YOU LIKE TO MAKE?" choose an amount to donate and check the box that says "This contribution is in honor or memory of someone."
-choose gift type "In Memory of"
-fill in Eileen Rohmer

thank you.

goodbye Eileen.

Eileen left us at 7:30 last night.  She was very peaceful and her mom and I were by her side.  She had been holding on for a couple days as her body failed her.

I whispered to Eileen that I was taking Red for a hike in the hills, and she passed away shortly after I returned.....she had waited for me.  There was a beautiful sunset during our hike...nowhere near as beautiful as she.

Her body will be cremated and I'm thinking of a small memorial gathering in the future, but for now I want to spend time with our family and friends.

I know Eileen touched many many lives.  If you wouldn't mind, I think it would be really nice if you'd leave a short remembrance or fond memory of Eileen in the comments here.  If you'd prefer, you can email me privately instead [v dot plows at gmail dot com].

fuck cancer.

keith

...
If you would like to make a donation in Eileen's memory, and help fuck cancer, please consider donating to UCSF.  Eileen always received amazing care and had access to cutting edge clinical trials and treatments.  Her wish was for any donations to be made toward breast cancer research.

Here's what to do:

go to this UCSF link

-choose 'Choose a designation' under "MAKE A GIFT"
-choose 'other' and write "BREAST CANCER RESEARCH"
-under "WHAT TYPE OF GIFT WOULD YOU LIKE TO MAKE?" choose an amount to donate and check the box that says "This contribution is in honor or memory of someone."
-choose gift type "In Memory of"
-fill in Eileen Rohmer

thank you.

we're keeping Eileen comfortable

Eileen is comfortable and very peaceful.  She'll be leaving us soon.  Much love to all.

no answers....more challenges

Here's what's been happening lately.  It's been kinda rough, and not much good to report:  Eileen sleeps most of the time, and isn't usually completely 'with it' when she's awake, but....I can still recognize Eileen in amidst the drug and tumor haze.  It's so wonderful to spend even a few waking moments with her here and there.  Even with all the crap acting against her, at times she's still got some of her humor and wit.  She always puckers when I come in for a little kiss.  

It can be challenging to get all the meds onboard.  Many of them are already liquid, but we've taken to crushing whatever pills can be crushed and tarting them up with ice cream.  I know my ice cream to med ratios can be off sometimes and she's a trooper....although her face does tell me to use better judgement next time.  She hasn't had much of an appetite but she had a full serving of yogurt this morning.  (little victories!).  The bowels are active, but....there really isn't much going in, so not much coming out either.  Her sorbitol dose is pretty high (60ml 2x/day) so she's getting some nutrition there at least....although it's pretty much the most horrible tasting stuff you'd ever imagine, even for someone with a sweet tooth.

She's had a few episodes in the last couple days that were terrifying for her, for me, and her mom.  Lots of fast onset pain and anxiety.  In talking with the doctor, it could be that the timing between her methadone doses is too long so we're going to try some adjustments.  I sure hope that helps.  In better news; the nausea has been under control *knock on wood*.  I don't know if the morphine was the cause as suspected (now using oxycodone instead), or the newer nausea meds are the help, but either way I'll take it.  If we can get a handle on what's causing the episodes, we'll be doing much better.  Of course, we're always reminded that the tumor involvement can be the cause of some of this too.  Just hoping some med adjustments can help her keep her more comfortable.

With the current state of affairs, a trip to the city for another palliative med dose seems out of the question.  Eileen really hasn't been out of bed in over a week.  Her doctor is in contact with the other doctor to see if maybe the dose could happen here at home.  Eileen lit up when I mentioned the possibility....I know she isn't paticularly looking forward to the trip over the bridge.  With all that being said, you never know if the methadone change might improve her energy level...she might perk up a bit.  All this stuff is very much day to day, moment to moment.  That's something we've been learning, that's for sure.  Still hanging on to whatever hope I can find to hang onto.  If it happens that we are a go for the city trip, I've got a city car share van lined up.  I did a bit of a dry run with that van earlier this week and it seems like it'll work if need be.

I'm working on being less of a control freak and Eileen's mom has been very patient with me, thankfully.  We're a pretty good team at this point, and having some alternating tag-team downtime has been extremely helpful, though I can't say that I'm ever really "off"....more like I just change the view and try to give my mind a couple different things to think about here and there.   I've gotten out for a few short bike rides up the hill and today Red and I even did a little run.  We took a break at a vista and Red did his best "logger dog" impression.  He's such a city boy....didn't know what to do with himself.

That's about all I got right now.  I sure wish we had something more positive to report...although I'm always tempering my assessment of the situation with the idea that maybe...just maybe, the palliative treatment is actually doing something and she'll start to feel a little better at some point.  Who knows.  We'll just keep on keeping on and hope that we can do a better job with the meds.  As always, we all really appreciate your good thoughts and prayers.....more than you might imagine.  It's seriously keeping me going knowing how many people are pulling for us.

just lots of questions

Apologies again for the lack of updates.  I'll try to give a bit of a catch up here.  I would love it if Eileen gave you an update herself but it's been challenging to find the time and energy.  We've collectively started a couple posts but then we don't get them finished up.  Days fly by.

I seem to have nothing but questions lately:  Is it the meds?  Is it the tumors sapping her strength?  Is it her immune system warring against invading bodies?  Is the palliative treatment from earlier this month doing any good?  Does the breakthrough pain sap her to the point where she just needs rest?  All of the above?  I've been spending probably too much time contemplating all this and more.  I'd pay anything for the answers.....but then again, maybe I don't really want to know.  It doesn't really matter when it all comes down to it- we just need to continue to work toward making Eileen as comfortable and happy as possible.

We've continued to have some rugged days with pain management and nausea (with a little vomiting).  Also, the GI issues continue to be hard to manage.  (meds too far...meds not far enough...etc).  We keep thinking we're just about to get things controlled, but then we have bad days again.  Curses.

We've scheduled another dose of the palliative treatment in SF about 2 weeks from now.  Our hospice doctor feels it's a no-brainer to go for another dose- the thought being that it doesn't seem to cause side effects that we can't manage and it's possible that it's doing some good.  On that note; the fact that Eileen has the previous dose on board right now makes me question the recent difficulties with pain and sleepiness and (real or perceived) progression of her symptoms.  One of the parting comments from the SF doc was that things might get a little worse before they might get a little better.  There's a lot going on in her central nervous system, so if the tumors get a little angry (they call it tumor flare) it could be seen as a positive.  Who knows, maybe the stuff is actually doing something good and her immune system is working overtime to go after the shit-ass cancer that's all up in there.  Again with the unanswerable questions.  We just keep hoping.  It's good to have hope.  Though I never thought of myself as much of an optimist, I sure have been wearing that hat lately.

In nicer news, E's sister Meg came out for a few days while her mom headed back to CT to touch home base.  It was great to have Meg here and it was good for her mom to spend some time with her grandchildren back home in CT.  I sure wish everyone lived closer.

For the time being, we're on a schedule with the hospice folks wherein we get a daily nurse visit.  We're all trying to get the meds dialed in around the pain and nausea and it's been helpful to have the nurses here more often.  They're in close contact with E's new hospice doctor and that's been going really well.  We're super glad that we signed up with her....she is GREAT.  We had an in-home appointment with the doctor and our main hospice nurse earlier this week.  We feel that even though the med road is still pretty rough, we will eventually get to a point of stability and comfort.  Here's to hoping!

I'll wrap this up by again giving a huge THANK YOU for all the well wishes and good thoughts and prayers etc.  We're really bad at getting back to people, but please know that we appreciate it!

my medicated wife

Well, it looks like I'll pinch hit and do another guest post. Eileen is currently sleeping heavy after being given a shit-ton of meds to battle her latest bout of nausea and pain. We've had a few rough days here, and we've talked often about how we need to update the blog. I'll do my best to catch you up to date.

Some nicer news; Things have definitely been overwhelmingly nuts here, but we did manage to get into the rental van last night and toddle over to a local Thai restaurant. It was swell to get out into the world if even for just a little bit. On our way home, we stopped by my work to check my mailbox for any deliveries. Eileen appreciated the uber-accessable environs of the Pixar campus and I found it really nice to "touch base" for a couple minutes. I have to admit it was rather strange to walk into my office. If I haven't mentioned it already- I've been off of work since late-June. I was on paid medical leave for a couple months but now I'm on unpaid leave. (Maybe if we got some better care coverage, I'd go back to work part time, but it's pretty hard to imagine being away from Eileen.....we'll be playing that all by ear..). Anyway, it was nice to roll around campus a bit.

We went down to the Oakland waterfront last week for a little roll around. It was really nice to get out and look around by the marina. I have to return the rental van and I'm not sure what the next step on transportation will be. I've been reading up on City Car Share, and they apparently have one accessible rental, but I'm skeptical it'd ever be available. Also, I've been investigating if we could use our Hoyer lift to get Eileen into the truck. It's not an ideal way to go, but it might work if I find the right sling to use. The Hoyer lift is a small crane that we use to transfer Eileen. (think: engine block hoist.) She likes to dangle in the swing. The care folks all comment that she's the only one they know of who actually LIKES being in the sling.

In rougher news; as I look back and try to distill things down to what's been happening, I come up with two things: discomfort and health care. Discomfort refers to Eileen's challenges with pain management, GI issues, and nausea/vomiting. Health care refers to all the hospice hoo-haa that we've had to endure over the past few weeks.

Eileen's condition is sometimes managed remarkably well. Other times (when you least expect) things can get pretty rocky. Mornings can be challenging with her back pain, and more recently with some pretty extreme arm pain. Her left arm and hand are sadly getting weaker, and now she's having a harder time typing/texting and certainly can't hold a cup. Thankfully her right arm and hand are still hanging in there. She's been having vision changes that she describes as "dropouts". Her left eye sees any highlights as pure white. It hasn't been as big of an issue around the house, but last night it was really bothering her as we drove around town. Coupled with the eye stuff is the fact that her cheeks are so darn big from the steroids that she actually has a little issue seeing around them. She keeps saying that she wants to get a picture with her next to a Buddha statue since the likeness is, well, similar. We think we're getting close with the pain management lately, but there will likely be some more med adjustments coming soon. She's had a pretty nasty few days of constipation issues, and that discomfort has caused a lot of nasty nausea and even some vomiting. The vomiting is terrifying since she has a very weak cough at this point and she's very afraid of choking. So far so good, and we're hoping to get the underlying nausea issues under control. TMI ALERT: We've had a few more shit blizzards in the past few days, this time via the use of enemas. She needs to get emptied out and then keep things moving. We're upping the anti-constipation meds and trying to find the "book ends" of how far we have to go, then dial it back. An extra challenge is that her meds, which are notoriously constipating, are generally consistent but they sometimes change due to breakthrough pain. Moving targets. Honestly, I'll take a shit blizzard any day over having her pained, vomiting, cramping, bloated and miserable. Normally, she's been spending at least a few hours in the wheelchair everyday. We usually get out on the deck at least, if not down the block a little bit. The bumps can be a real problem for her back pain. It's nice when we go on an outing where the pathways are smoother (i.e. at Pixar). 

We're extremely fortunate to have amazing health insurance through my work, but even so, I could write a book about our health care challenges. Our hospice experience has left a lot to be desired lately. We've had some very long wait times and other weirdness. That said, we made a really good decision to get a separate, private hospice doctor for Eileen. We're very excited and already feel better about that aspect of this whole thing. The doctor comes highly recommended and she was great when we met her. I think she's the key to helping us navigate the healthcare- both hospice care, and home care that will help me. I'm positive Eileen's health will benefit from the new situation as well.

Along the way, we've had the opportunity to have overnight nurse coverage from 8pm-8am. Turns out we won't be able to keep that coverage due to insurance issues, but it's been a nice relief that I've enjoyed while it lasted. Unexpectedly, I've come to enjoy the social aspect of it. If you know me, you know that I'm not a super social guy (nor is Eileen a super social girl). But I've had some great conversations with the nurses. They all have such amazing stories and they're all super nice. We've been lucky to get nurses and hopefully we can find a way to continue this kind of coverage (or similar) as we go along. It's been a great help for my sleep since I normally sleep in the dining room next to Eileen's hospital bed (with one eye open). When the nurse is here, I feel comfortable enough to sleep in the back bedroom. Super strange having someone in the house all night. It sorta feels like I'm sleeping in a hotel for some odd reason, but I get a little better sleep when I know someone is watching over Eileen. Plus, Red gets to sleep in the big bed with me and he is SICK for it.

Ok well it's the next day here and Eileen is awake so I'll wrap this up. As always, please know that we totally appreciate and thrive on all your notes and messages and support, even though we can be slow to respond! We know you're rootin' for us and it keeps us going.

radio silence broken

Guest post from Keith

Apologies for the lack of updates!  Maybe this brain dump will catch you up:  We're up at 6 or 7am, then our days have been filled with visits from nurses, counselors, social workers, health aides, drug and equipment deliveries, bed-to-chair transfers, chair-to-bed transfers, sponge baths, great visits from friends, transportation logistics, bowel movement hazmat cleanups, med dosing, pee bag emptying, and the olympics.  We've been trying hard to get ready for bed earlier than 1130pm....we're finally making headway on that.  Last night I think E was snoozing by 10:30 while I tried to wind down in front of the tv (which of course resulted in me promptly falling asleep in a weird position until I dragged myself to bed at midnight).  Eileen (and I, to a lesser extent) caught a few moments for an actual mid-day nap the other day and it was glorious.

We've learned that one of the challenging aspects to all these (necessary) visits from hospice folks is that they, like the cable company, sort of give you a window of time in which they will likely come by. Fine, right?  Yes, except then you're sitting there on alert from when the time-window opens until they eventually show up....what else could I have gotten done in that time?  We need to just DO things if we need to do things and not get hung up on being "ready" for the visitor to arrive.  Just a little quibble, I know, but what's life if you've got nothing to bitch about, right?

She (we) have good days and bad days but thankfully the last couple days have been relatively good.  The morning pain level usually sets the tone for how things will go.  When she's waking up with a lot of back pain, we have to dose her pretty good...and then of course she gets a little loopy, which is frustrating to her (and to me to a lesser extent).  We think we're getting the "fine art" of pain management a little more controlled, as the last couple days have been better.  In an effort to simplify the med regimen, we've been directed toward only methadone (with morphine for breakthrough pain) instead of the oxycontin/oxycodone plus methadone plus morphine that Eileen had previously been using.  That's been helping, especially from a med management standpoint.

The "whole hospice thing" continues to be surreal and challenging, but I will say that we've gotten into a decent groove with our hospice team.  After a rocky start, we're fortunate to have some really nice people helping us out.
[edit: I'll also point out that during the writing of this post, we had no less than 8 phone calls regarding home health aides and insurance coverage...it's ringing off the hook!]

We had quite an adventure on Wednesday, which I'll go into in a minute.  Some background: I had been doing some 'net research on palliative treatments that might help Eileen with her symptoms and discovered a doctor in SF that offers a particular treatment that can hopefully, at the very least, lessen her pain and maybe even give her a little more time.  That sounded great, but the logistics of getting Eileen to the city was daunting.  We're so new to all of this wheelchair/paraplegic stuff and frankly I HAD NO IDEA this was such a big deal.  We rented a powered wheelchair which is pretty sweet, and because we have the new ramp (built by some of  THE FINEST people in the world) she can get out of the house and down the street.  But if you don't already own a wheelchair accessible vehicle and your appointment isn't right by a train station, life is a real challenge.  I researched, surfed and called around, and all the options for getting to a doctor in the Marina District (read: not simple) were looking pretty rugged.  Of course other paraplegics manage it all the time, but us being "newbies" made a lot of the options not feasible at all on short notice.  I know we could have done something, but all I was coming up with sounded, well, hard.  Until I called "Wheelchair Getaways", a van rental company based way down in Millbrae, near SFO.  Anyway, I talked through our situation, and they made things start sounding easy.  Doable.  Not fraught with stress.  We have a home health aide ("The Boxer") from 7:30-10:30 weekday mornings- so as soon as The Boxer showed up, I booked it over to the train station bound for Millbrae (about an hour) and met the sweet people who helped solve our short term transportation issue.  They graciously met me at the train station and I drove back home with a fully ADA equipped mini-van!  Simply wonderful.

That evening, we did a dry run with getting into the van and driving around the block.  Actually, I took E over to the mcDonalds drivethru for a cheeseburger...one of her vices.  (really, just on bite or two is all she ever wants....so please no mcD deliveries :)...).  It worked!  We're mobile!

So, fast forward to Wednesday- we got a little bit behind on our departure but not too bad....was looking good for our 1pm appointment assuming traffic wasn't stupid.  But of course, traffic was stupid (because it always is), where we least expected it.  Long story short; I was sweating bullets but we got to the doctor's office just a couple minutes late.  Another one of my personal little victories.

The doctor was nice, the treatment was fast and easy, and Eileen has had absolutely no side-effects other than a headache on the ride home.  What's not to like, hey?  We got behind on meds through all that stressful transit time but despite it all the trip back home went pretty well...however, we were exhausted by the time we got her back into bed at home.  (That was the "nap day" by the way.  Gotta try to squeeze in some more napping...hopefully without the precipitating stress next time!)  The treatment lasts for a month, so we'll keep rolling along and hope that it slows down the train at least a little.  No promises from the doc...this is truly a shot in the dark, but the idea is that if it's easy to do, let's try it.  If Eileen's symptoms seem to slow down a bit, then we'll opt for another dose.

TMI ADVISORY:
Her latest status is that she's numb from about her mid-chest down, with no bowel or bladder control.  Her left side is weaker than her right but she can still mostly use her arms/hands.  No headaches yet, thankfully.  The back pain can get pretty bad, but like I said; I think we're getting better at managing the pain.  We've had a bit of a roller coaster with the bowels.....sometimes going too far with the anti-constipation meds (can you say "shit blizzard") and sometimes not far enough ("oh honey, I think your belly is looking a little distended...").  It's quite a party at times, but we're managing as best we can.

Something that's in the works right now is getting more home health care for us so that I can get better rested and get a break.  Right now we have The Boxer coming for 3 hours weekday mornings and that's been a great help.  I'm able to get out for a quick walk with Red and take a shower, and do a few things around the house.  Some more coverage would probably be good, though I gotta tell you; we've historically been rather private people as far as visitors and socializing goes so it's been quite an adjustment having people coming and going at all hours.  Luckily, Red has been handling the increased activity fairly well, as long as his cookie jar is close by.

Nurse Diesel goes over the med notes...

Ok well I'm gonna wrap this post up...sorry for the length and thank you for sticking with it.  And a huge THANK YOU for all the continued good thoughts and words of support... even if we're unable to get back to you, please know that it helps.  A lot!  You are part of our support system, our team, and we rely on you even if we aren't reaching out to you.  Visits from friends raise our spirits, so please know that YOU are not part of the hospice chaos, and we're always happy to fit friends in.

Still Here, still hanging in...

Had a couple bad days here trying to titrate pain meds.  So please don't worry if emails/facebook messages, voicemails, texts don't get answered in as timely a fashion as usual.  That said, we (e, k and mom/maureen - local team) love your emails, visits, phone calls etc.  They keep us going and our spirits up.

Today was actually better.  We're getting closer to dialing it in despite the moving target of progression.  The other big news is that not only do I have a GREAT ramp, but I have a motorized wheel chair.  It is great for the neighborhood streets (pneumatic tires and no one has to push me :).  We've taken it for a couple "walks" and it is wonderful.  We're just dialing in things like where the best and worst (bumpy, potholed, etc) streets are.  Soon I'll be zooming around the neighborhood without breaking a sweat.

Thanks for all the support!

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...

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!

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!

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

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!!

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.

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.

you just got scheduled for brain surgery, what are you gonna do?

Just to clarify, I scheduled my ommaya port insertion for June 18th.  It should be much easier than my craniotomy in September, but I am going to get another hole drilled in my skull.

The picture is an all too subtle reference to the fact that Keith and I are off to Disney for the weekend.  There is a new ride associated with the Cars movies from Pixar and we're headed to a sneak peak.  It should be some silly fun!

A Gorgeous Weekend and the Beginnings of a Plan

First, we had a great long weekend.  We kept it pretty lazy Saturday and did a couple things around the house.  On Sunday we took Red up to the hills for a hike at Sibley.  The wildflowers were really putting on a show.  I was feeling pretty good so we did the long loop.  Inspired by that hike we decided to head to Point Reyes the next day.  We don't go as often as we used to because there aren't many trails that allow dogs there.  So we took Red for a quick trot around the neighborhood and off we went.  It turned out to be a nice clear day at Point Reyes and we had another gorgeous hike.

That's me there, almost to the top...

Looking towards Chimney Rock.

On to the plan...My medical oncologist called today with the first step in my plan.  There is too much activity for radiation at this point, so that's out.  She is suggesting I do what is the "standard of care" in this situation which is intrathecal chemotherapy with methotrexate.  Before I start the chemo she wants me to get a lumbar puncture (Monday afternoon, woo hoo!) to see if they can detect the cancer cells in my spinal fluid.  Apparently this isn't the most reliable test, there are a lot of false negatives, but nonetheless I need to get it done as a baseline before starting anything.  After we get the results of the lumbar puncture I'll get more details on what comes next, but from the sound of it, at first they'll do another lumbar puncture to administer the chemo but eventually I'll have something called an ommaya reservoir put in by my neurosurgeon (it's like my portacath, but it'll dump the chemo into my central nervous system instead of my bloodstream).

I'll know more after the procedure on Monday.  The doctor doing it is the brain metastasis specialist and hopefully I'll get a chance to pick her brain about all this stuff.  Until then we carry on.  I've got to get this house vacuumed- it's shedding season and it's getting out of control here.

Can't Seem to Catch a Break

So, my left shoulder has been bugging me for the last month or so.  It felt like a pinched nerve or tense muscles, something I'd felt before, so I was going to wait it out but it just didn't go away.  After talking with my oncologist about it, she wasn't too concerned- she gave me a referral to physical therapy and an MRI just to be sure.  Well, I had the MRI yesterday and today my medical oncologist (my main doc) called.  There is cancer in the lining of my spinal cord.  My medical oncologist is surprised and disappointed.  I am too, I really didn't think this MRI was going to show anything but a pinched nerve, urgh.

My medical oncologist has a call into my radiation oncologist.  She wants to know if it's feasible to do some radiation to relieve the pain.  If so, I'd get radiated and then I would start a trial of a chemo designed to target central nervous system metastases.  I should hear back from my medical oncologist tomorrow or early next week.  As usual, I'm anxious to finalize "the plan".   Until I know what comes next I need to remember I'm still feeling good.  In fact I got the call while taking good old Red for a trot.

Hearing-

-Aid is in and it works (and it isn't super uncomfortable).  Went down to San Mateo with Keith to get my hearing aid.  I fucked up and thought the appointment was at 2:30, when in fact it was at 1:30 (really, it's miraculous that this doesn't happen more given how many appointments I have).  Thankfully the doctor was willing to fit me in at the end of her day (4:30).  Keith and I took a little stroll around the neighborhood and enjoyed the fine spring day.

The hearing aids are tiny, really pretty hard to see if you aren't looking for them (pictures coming).  It's going to take me a while to get used to them.  It doesn't make it so I hear out of my bad ear, it just "broadcasts" the sounds from my left ear to my right ear.  It sounds a little tinny, but I think I'll take it!  I'll go back to see the Audiologist in two weeks to make the necessary adjustments.

Home Again, Home Again, Jiggity Jog

Keith and I are back from a quick trip back east to see my family. While I've seen my mom and sister recently, it'd been entirely too long since I'd seen my niece and nephew. It was great to see everyone! Keith did his son-in-law duty and fixed a couple things around the house.  I had fun putting together a giant bubble blowing contraption (so fun, I might have to make one for myself).

We got back Tuesday night.  I took it easy yesterday and today I had an echocardiogram (to make sure my treatment isn't damaging my heart muscle- it isn't, I still have an ejection fraction of 61%) and my Herceptin drip.  Things went smoothly and I hustled home on the BART.  Keith picked me up at the station and we had lunch together.  It was a good day.

12:21

Got an email from my medical oncologist at 12:21 saying that everything is shrinking (nothing new showing up and nothing getting larger). I love that she lets me know so quickly! My MRI was yesterday at 5pm, so I expected that I might have to wait all weekend. Whew! What ever little headaches I'm having are not from cancer growing in my head. What a fucking relief this is. Lets hope things keep shrinking!!

Sorry I can't hear you... yet!

Had an appointment to discuss hearing aids today.  By luck or good planning my audiologist has single sided hearing loss (like me) and has tried the new fangled hearing aid that was recommended by the folks at UCSF.  She liked it, but at the moment anyway she wears a different type of hearing aid.  After talking to her about the different options, I've decided to try the type of device she uses.  It's called a CROS device (contralateral routing of signals).  Basically there will be a receiver in my deaf ear that will transmit sound to a device in my good ear.  The benefit of this option is that I get a 60 day trial period; if I hate it, I can return it for a refund.  The other benefit is that it will be completely covered by insurance.

The other option is called a SoundBite.  It consists of a receiver in the deaf ear that will transmit sound to a device that fits around your back teeth.  The sound is then carried in the bones of your skull and is detected by the good ear.  The downsides of this option is that is so new it may or may not be covered by insurance, the cost of this option is about $8000, the battery only holds a charge for 5-6 hrs and it takes a lot longer to get one.

My decision seemed pretty easy- I'll try out the CROS, see if I like it.  If I hate it, I can return it and maybe then I'll try the SoundBite.  I'm just excited to be making some progress.  Next Thursday I have an appointment to get fitted for my hearing aid.  Here's hoping it works!

Next up... my scan on Thursday.  I'm really hoping I'll get the results on Friday, but that might be pushing it.

And We're Back...

Keith and I are back from a quick trip to the U.P. to see his family.  I was a little nervous about travelling so far given all that is going on with me, but it went fine.  Getting out of the city and visiting with family was just what we needed.  We rented the same cabin we rented at Christmas time.  It's a comfortable place tucked in the woods.  We both really appreciated getting out of our own heads for a while.

It was great to see everyone and I'm happy to report that Keith's mom is doing a lot better.  She has more energy and strength.  Almost a year after all this started, she isn't back to her old self, but she is making progress!

I'm feeling ok, my headaches aren't any worse.  All the sitting around I've been doing lately has made me stiff and sore.  (I'm not confident enough to do really long walks given my Tykerb gut - sorry if that's TMI).  I think I'll be able to figure out a routine now that I've been on Tykerb for a couple weeks.

Just another tidbit about my lame radiation oncologist- skip ahead if you're bored with this storyline:  I expected a call to schedule the brain MRI while we were away, but no...So on Wednesday morning I called my radiation oncologist and left a message.  I hadn't heard back by the end of the day, so I emailed her directly.  On Thursday she emailed me saying that her staff were having trouble getting me in.  The only appointment they could get was at the end of May and she was hoping to figure out how to get me in earlier.  Seemed weird to me, but ok.  I thought I'd wait and see.  Fast forward a couple hours...

I had an appointment with my medical oncologist yesterday and for the first time I saw her nurse practitioner instead.  Since I didn't have anything big to discuss it was fine and actually she gave us a lot of good advice.  She also took charge of scheduling my brain MRI after I mentioned it.  She ordered the MRI and on my way out I sat down with the scheduler.  It took a fax and a phone call, but I'm now scheduled for my MRI next Thursday afternoon.  It amazes me how efficiently some offices work while others are just a clusterfuck. I'm finally learning that I should just avoid dealing with the radiation oncology folks unless necessary.  After seeing the nurse practitioner and the lovely scheduler we went upstairs for my Herceptin drip.  That went smoothly- my new port works GREAT.  I love it!

To top the day off we headed over to the Off the Grid on Stanyon.  For those of you not in the know; Off the Grid is a gathering of some of the local food trucks.  Keith is sick for the Chairman Bao truck and yesterday I tried a bahn mi and some sweet potato tater tots from the Little Green Cyclo truck.  Keith's food was great as usual, the tater tots were really yummy and my sandwich was just ok.  It was a gorgeous and sunny early evening.  We loved topping off our afternoon of medical appointments with something treatful before we headed back into traffic to get home.  (Keith is getting pretty smarty-pants about lane choices prior to the bay bridge.  I don't know if it actually helps much, but at least we seem to keep moving forward...slowly...)

Animal update:
Diesel is fine.  She was back to her spunky self right away.  It was clear when I rescued her that Red had had his mouth on her (she had saliva on both sides of her rib cage), but he must have just mouthed her (thank goodness!).  I can't believe we have a dog that won't leave our cats alone!  When we adopted him they told us he would be fine with cats with a little work.  Well, we've tried.  If one of us is around we can keep it under control, but when left to his own devices, instinct takes over.  Ugh!

Crazy!

So I had an appointment with my radiation oncologist on Monday. I told her I still have some fleeting pain in my head; not really headaches, but pain nonetheless. I thought she'd say "...it's probably just tumors shrinking.." yada yada. Instead she was concerned enough to order my followup MRI. Last time we talked she said she'd order the MRI 8 weeks after radiation ended. Now it'll be more like 6 weeks by the time it gets scheduled. Not a huge difference, but it gets my mind in that fearful scan mode. yuck.

As if in an effort to get my mind off things, the animals decided to create some major drama yesterday! I was in a cleaning frenzy, and in my frenzy I left the pet gate open and Diesel got outside (our cats are both indoor cats, Hayward is happy that way, Diesel always wants to explore). The problem here is that Red was outside! (We keep the cats and Red separated at all times because Red, essentially, wants to eat cats....despite the shelter telling us that he'd be ok with cats.). I heard a ruckus and hustled out to the yard to find Diesel cornered and cowering and Red barking going after her. I got them separated, screeched at Red and brought him inside. Then I went back and got Diesel. She seemed fine, but there was definitely saliva on her from the dog. I looked her over pretty carefully- nothing was bleeding or sensitive, but I decided to take her to the vet just to be safe. I took her in, and the vet thought her lungs sounded funky and wanted to keep Diesel so they could do x-rays and keep an eye on her. So, I left her there and went home and waited by the phone for news. Later in the afternoon I talked to the vet and found out that Diesel seemed fine. Her lungs were sounding normal and we could go get her at closing time. The only hitch was that Diesel was a "hard stick" (just like me!) so they wanted to leave her catheter in overnight, just in case. How bad can that be right? Ugh.

We picked her up, brought her home and she immediately went after the bandage over the catheter. We turned around, headed back to the vet (thankfully they don't close on time) and got Diesel a cone. Case closed, right? Oh no.... Diesel spent the entire night banging the cone around. She never got comfortable (and neither did we). Fast forward to this morning; we went back to the vet for a quick check, everything looked fine and the catheter is out (and more importantly the cone is off!). Geez! If that doesn't make my head hurt I don't know what will.

Plan B

My Herceptin side effects have subsided and I've started taking Tykerb. At this dose, Tykerb is easier to deal with. It makes me feel a little oogley and unsettled. It is hard to figure out what I want to eat, but gone are the days when all I wanted was spicy burmese.

The big news this week is that I got an appointment with a different audiologist (that can get me the specific type of hearing aide that was recommended)! Yeah! The appointment isn't until the end of the month, but that is still 2 months before I could get into UCSF. It'll be nice to make some progress before July!!!

Other than that I've had a nice lazy week. I did a little bit of school work, read a book and relaxed. My moon face is slowly improving, yipppee!

I thought I'd snap a picture of part of a note I got last week. It is from a former student who I loved, but drove me a little nuts (you'll see why)...

So I Finally Saw the ENT and...

She told me that I'm deaf in my left ear. The good news is that despite feeling funny my right ear is fine. The other good news is that I should be able to get a hearing aid (of sorts) to help me. At the end of the appointment with the ENT, she gave me a referral to get fitted for a hearing aid. I headed over to make an appointment (all excited to get something to help)...and the first appointment they have is at the end of June (and that is just the introductory one, I wouldn't get the hearing aid for another two weeks). I told the receptionist I might cry, I was so disappointment it would take so long. I managed to hold it together, but holy shit! That is 3 months away. One of my goals for next week is to call around and see if there are other options that can get me in earlier. The only thing that makes is a little tricky is that the ENT was recommending a new fangled hearing aid for the type of hearing loss I have. This hearing aid isn't something everyone has because it was FDA approved only recently.

What else happened last week? I had the pleasure of hanging out with my sister. We ate our way around the East Bay, relaxed, walked the dog, did a little shopping and went to the city for appointments. I saw my oncologist on Tuesday - no big news there. She wrote me the prescription for Tykerb (I don't have it yet because you can't just pick that kind of drug up at the drug store, but I'll have it next week) and got me scheduled for Herceptin. Wednesday was the ENT debacle. Thursday, I had my Herceptin drip. The drip went smoothly. I have never had any significant side effects from Herceptin, until now. For now I'm blaming it on the fact that this was a loading dose and I think I was dehydrated. I had trouble sleeping Thursday night and when I got up I was sore all over. On Friday, Meg and I caught up with some of my Science Department colleagues for a drink and some macaroni and cheese. They delivered the sweetest quilt (pictured), more cards and a luxurious gift from a group of parents.

What comes next? I will start up the Tykerb at 1/3 the dose of the trial (so I'm hoping it'll feel easy, we'll see). More relaxing. Calling around to find a place that can get me in so I might be able to hear things happening on my left, before July.

Fatigue is Here

I had a good week- I managed to stay busy enough. I checked everything off my to-do list (pretty much anyway). I walked a lot of hilly miles. I did a bunch of cooking; some things were successful (I finally made a really good batch of mujadara- lentils and rice with carmelized onions) and some not so much (raspberry coconut macaroons- great when they came out of the oven but a mushy mess the next day, ick). We had a chance to catch up with some of my colleagues from work last night and that was great. After years of seeing them everyday of the school year, I miss seeing them everyday. Oh, and the colleague who hosted has two of the cutest little dogs! Made me want another dog (not what we need, but...).

There were a couple of gifts from students for me yesterday. One was a gorgeous flower arrangement from a former student and teaching assistant and the other was...wait for it.... a saber toothed tiger tooth! He was given the tooth as a gift and lent it to a friend who had cancer and that friend recovered, so he's lending it to me now! I'll be fighting this crap like a saber toothed tiger now! Seriously though, all my interactions with students and parents have been so supportive and sweet, I am really touched. Thank you!

Keith and I saw a psychologist who specializes in helping cancer patients and their families. It was a little weird and really draining, but I like her a lot and I think in the long run it will be a really good thing. I made another appointment to see her around the time I'll be getting my follow up brain MRI because I'll (we'll) be anxious about the results. It is a weird thing though, by the end of it we both left feeling like we've been doing a pretty good job of coping without any professional help so far.

That sums up the week, then came Saturday...I slept ok, got up and finished making the bagels I started yesterday (it was fun to try making them, but I'm not sure it is worth the hassle), ate a yummy breakfast of FRESH bagels and lox and promptly fell asleep on the couch. I proceeded to spend most of the day dozing and watching throw-away TV. It was a nice lazy day, but geez!?!? I finally got up and did a couple errands with Keith and at 7pm (in the rain, ugh) I took Red for a short walk. I think the fatigue they kept telling me I'd have might be here. We'll see how tomorrow goes.

My sister is coming out on Monday, so that'll be fun. I won't have to work at staying busy next week because we'll figure something out. I have appointments on Tuesday (oncologist) and Wednesday (hearing test and ENT - finally!!!), but the rest of the time we'll have fun relaxing and eating food she can't find back home.

I will say that other than being lazy, I'm feeling good. I've been off steroids for almost a week. No real change in the moon face yet, that'll take a month they say. I don't have any real headaches. I think my legs are getting stronger and I'm sleeping better.