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.