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.