Archive for September, 2010

22
Sep
10

Getting real

Julie and I knew death was a possibility back in 2007 when Julie first found the lump.  We knew it was a certainty in March, when we learned the cancer had metastasized.  We knew it was going to be sooner rather than later when Julie and Dr. M decided to end chemotherapy in August.  On 9/8 I asked the hospice nurse for her guess as to Julie’s likely lifespan, and she guessed 2-6 weeks.  Today I asked for an update on that guess, and she now guesses 2-3 weeks.  I knew that already, but for some reason hearing it from her made it real.  It’s been a hard, sad, teary afternoon.  I knew this would get tougher the closer we got, and it is.  The only thing that makes it any easier is all the support we’ve been getting from friends and family — and we’ve got that in spades.  Thank you all for caring.

On a more practical note, one of the ways I’ll get the word out when Julie passes is via this blog.  If you haven’t already done so, you may want to use the email subscription feature in the right sidebar.  By subscribing, you’ll receive copies of each new post to your e-mail in-box as I write them, rather than you having to visit the blog regularly.

Julie sleeps most of the time now, either due to the disease or the medications.  The pain started ticking up a bit last week, but we were well below our medication dosage limits so we turned them up a notch and now she’s staying pretty comfortable.  When she’s awake, popsicles have been popular for quite a while, and we were visited by a sudden craving for vietnamese noodle soup last week.  Otherwise, it’s pretty quiet at the moment.

Thanks to all of you for being so supportive. Please know that we think of you, too.

Love to all,

Brian

Advertisements
12
Sep
10

Guesses, plateaus, and cravings

Brian here.  Bad news is rough, but no news often feels worse.  I’ve been stressing about Julie, wondering how much longer I’d be able to enjoy her company.  On bad days, I thought she might have two weeks left.  On good days, I thought six weeks was more likely.  But of course, I’ve never been through this before so I don’t give my estimates much credibility.  I imagine a lot of you have been wondering, too.

Last week I asked the hospice nurse for her guess.  These folks deal with the dying day in and day out.  They don’t have any magical insight, but they do have a lot of experience to base their guesses on.  Her guess: somewhere in the two-to-six-week range.

I wrestled with whether to share this with Julie.  On the one hand, I couldn’t see that it would help her.  On the other hand, who has more of a right to know than Julie herself?  We’ve never held anything back before, and I couldn’t see a reason to start now.  Ultimately, it came down to the fact that I wanted to share it with her family and all of you, but I was afraid it would get back to her.  I knew that if she heard it, she should hear it from me.  So I told her.

That turned out to clearly be the right thing to do.  Julie doesn’t see some of the changes in herself that I see, and she didn’t enjoy the idea of carrying on as she is indefinitely.  It looked to her like she was staying in place, and it’s not a great place to be.  The knowledge that the end was coming, that pain and pain pills and sleeping nearly around the clock would cease, that was a relief to her.

On the physical side, Julie’s health seems to go in plateaus.  She’ll take a sudden drop in some aspect or another, and then stay pretty stable for a while.  A few weeks ago she suddenly had problems rolling over in bed.  If she’s was uncomfortable laying on one side, she’d have to get out of bed and get back in in order to lay down on the other side.  I don’t know if this muscular or neurological, but it’s the reality she’s living with.

A few days ago, Julie suddenly became too unsteady to walk unattended.  One day she was OK, the next day she needed help.  She can still walk down the hall, but I have to be at her side or behind her, steadying her as she goes.

Then on Friday I came home after being a way for several hours to find her sitting on the edge of her bed.  She didn’t know how long she’d been there, but it had been a long time.  It seems she’d gotten herself up with the intention of laying down in a more comfortable position, only to discover she couldn’t do it without help.  So instead, she sat on the edge of the bed and waited for me.  I don’t really understand the problem, but it’s hers and it’s real and it’s what we need to deal with.

She sleeps a great deal.  I’d estimate that I see her awake about an hour a day, spread out over four or five short segments.  She pretty much only wakes up when she needs something — a pain pill, a bite to eat, etc.

Speaking of eating, she’s prone to cravings.  A while back she developed a sudden (like instantaneous) craving for Taco Bell.  I picked up food from Taco Bell, figuring that she’d have a bite or two and I’d wind up eating most of it.  But no!  She skipped the tortillas, but ate the insides out of two Burrito Supremes in short order.  If I’d known that was going to happen, I would have ordered something for myself.

Another time it was Kentucky Fried Chicken.  This was less of a success, though, as she reported it wasn’t as good as she remembered it to be.  That may have just been a matter of bad timing though.  3PM may not be the best time to pick up freshly prepared chicken — especially given that the store was vacant of customers except for myself.

Yesterday, it was Krispy Kremes.  She wanted whatever they were currently making, but when I got there they’d finished all their doughnuts some hours earlier.  Left to my own devices, I got her a cream-filled glazed doughnut.  I took it home, where she devoured most of it in about two minutes.  For a woman who’s had next to no appetite, that was a great success.

So you see how her time goes.  Lots of sleeping, occasional declines, and rare moments of cravings satisfied.  And when we’re not discussing the possible need for another pain pill, we talk about the joy we have at being in love.  It’s not a good life compared to what we had, but still, we count ourselves lucky.

02
Sep
10

Paracentesis

With the liver not working as well as it should, fluid collects in the abdominal region.   On 8/8 they used a procedure called paracentesis to remove it (the fluid, not the liver), and drew off 2.1 liters.  Imagine hiding a 2 liter bottle in your belly.  On 8/19 she needed again, and they drew off 3.5 liters.  She was starting to need it again, so today we were off to the hospital for another go-round.  It’s a relatively quick procedure, and I can stay in the room with her while they do it.  I won’t say it’s painless, but it’s mostly painless and just requires a local anesthetic.  The result?  Just two weeks to the day after the last procedure, they drew off 4.5 liters (two bottles!).  It’s a wonder she’s getting any liquids at all for the rest of her body.  In any case, she’s much more comfortable now, and her appetite has picked up some too.  -B.




Post archive

September 2010
S M T W T F S
« Aug   Oct »
 1234
567891011
12131415161718
19202122232425
2627282930  

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 33 other followers