Archive Page 2

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.

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31
Aug
10

Not much news

Brian again.   With the sense of urgency rising, family has been coming to see Julie.  It’s really taxing on her, but also really important.  It’s tough.  Some folks have driven two days just to spend such a little bit of time with her.  Then she pretty much sleeps the rest of the day and the next day too. (Not to paint the picture too grim — she has almost zero energy but I don’t think there’s anything imminent about to happen.)   Her 90 year old father made the trip, thanks to a guardian angel that dropped everything to escort him.  A brother and sister-in-law, too. Two uncles and an aunt tomorrow.  Visits are hard, but family is important.

Being far away, the family hasn’t had the benefit of seeing the changes in her day by day.  They tell me they’re shocked at the decline.  Me too.  We were still going out to the movies last month.  Today she wanted to go upstairs, but aborted the mission on the third step as requiring more energy than she had.  She doesn’t answer the phone or the door — she’s usually not awake enough for conversation and it’s fifteen steps to the door.

And yet, amidst all this, she’s watching out for me.  She tries not to call me in the night, because she doesn’t want to bother me.  On the weekends, she’ll lay in her bed awake to let me sleep in.  I tell her to call me anytime, but unless it’s urgent, she won’t if she thinks I’m sleeping.  How can anyone be in the final weeks or months of their life, and still be thinking of others?  What a wonderful, caring woman I married.

Julie said I should tell everyone that the posts will probably appear less often as there won’t be much to report, but that you’re not to worry.  See?  She’s watching out for you, too.

Take care, everyone.  -B.

21
Aug
10

Details

Brian here.  Julie doesn’t write much these days, so I thought I’d fill in some of the details and subsequent events since her last post.

As Julie described, we met with the good Doctor Medici on Thursday.  Any treatment needs to pass two tests — the doctor needs to believe it’s medically wise, and the patient needs to be willing.  On Thursday chemo failed both tests.  Julie and the Doctor both believed that continuing chemotherapy would do more harm than good.

So, no chemo.  Also no radiation, as it’s not appropriate in this kind of a situation.  (Sorry to be vague — it was discussed and discarded a long time ago and the details escape me.  Sufficient to say it wouldn’t help in our situation.)  Also no surgery:  A) Julie probably couldn’t survive it in her condition (my opinion); B) there are too many tumors to leave anything like a functioning liver.  It would look like swiss cheese, only without so much cheese.

People ask me about the possibility of a transplant.  Again, I doubt she could survive the surgery, but there’s really a more important reason: a life.  Stage I cancer is highly localized.  If you get it and kill it, you’re done.  Stage IV cancer, like Julie has now, means that there are free floating cancer cells throughout her body.  Most of them will die, but some will take root eventually.  That’s why Stage IV cancer is terminal.  We can never find and kill all the cancer cells, so the cancer will always come back.  Now, if there were an oversupply of livers to transplant, maybe it would make sense to give one to Julie and let her have a few more months or even a year or two.  But there’s a severe shortage of transplants available.  It just doesn’t make sense to put one of the few available ones in someone that won’t live long anyway.  Far better to give that liver to an otherwise healthy twenty-something so they have a chance to raise a family and play with their grandchildren some day.  Two years for one patient vs. perhaps four or five decades for another — the choice is pretty clear.

So where does that leave us?  Very frankly, it leaves us where we always knew we’d be.  Julie has transitioned from  therapy to hospice care.  We’ll keep her comfortable and care for her needs.  We won’t extend her suffering and push her through miserable treatments while we try to cure the incurable.

Julie and Dr. M reached that decision Thursday morning, and the hospice nurse made a special trip out Thursday night (thank you Annette).  She told us about all the services they provide, which are extensive.  They’ll be Dr. M’s eyes and ears, so Julie doesn’t need to travel for check-ups.  They’ll handle all her prescriptions, delivered direct to our door, and with a strong focus on comfort.  They provide equipment (the hospital bed arrives Tuesday so Julie doesn’t have to go up and downstairs).  The nurses typically visit three times a week (or more or less if we wish), plus there are health-care assistants that can assist with feeding, bathing, etc.  They have volunteers that can assist with transportation issues or just come in to provide companionship.  Non-denominational chaplain services and physical therapy are available if we wish.  On call nurses are available for consultation and visits 24×7.  And they’re funded solely by grants and donations.  We’ve never thought about hospice organizations much, but now we’re really glad they’re there.

You’re probably wondering what Julie has for a life expectancy.  Dr. M prefaced his answer to that question by saying that studies have shown doctors are the very worst at making these predictions.  Given that, he said he thought we had numerous weeks to a handful of months.  Maybe he’s right, maybe not.  We could lose her today, or six months from now she could be doing so well that I’d need to go to the DMV to renew the handicapped parking tag I got last week.  But probably not.  I’m notoriously pessimistic about these kinds of things, but I suspect I’ll be celebrating Christmas alone.  And now I cry.

About visitors: we know we’re in your thoughts and prayers.  Unfortunately, Julie is not really up for visitors.  Sitting up sometimes makes her out of breath — maintaining a conversation (even if mostly just listening) is a struggle.  Know that we think of you, too, and thank our lucky stars to have so many people that care.

And finally, I’ll leave you with a bit of dialog that just occurred as Julie was laying down for a nap:

B: I could read to you if you like.
J: Ahh.  You’re so sweet.
B: See, I told you I was a nice guy.
J:  I know.  That’s why I married you.
B: Oh, I thought it was the good looks.
J: That too.
B: And the chest hair.
J: Well, two out of three’s not bad.

19
Aug
10

who’s telling whom what?

We went in to see Dr. Medici today expecting to tell him that I was quitting chemo; instead, he surprised us by saying that another chemo would probably do more harm than good. I’d figured on having to convince him, and he thought he’d have to convince me.  So, no chemo for me.

Also I had fluid build-up in my abdomen again (ascites, pronounced ah-sigh-tees) & had 3.5 litres drawn off (when I was in the hospital, they only got 2.1 litres).

All for now,

17
Aug
10

how are *you* doing?

I’ve been out of touch for so long, and wondering how my friends are doing. E-mail (home, not work) is best, or a comment on this blog.

We see the oncologist on Thursday (way too early) to decide when to resume chemo. I’ll let you know what we decide.

16
Aug
10

energy, no mobility

I’m slowly regaining energy, but my mobility is still gone south. Walker, wheelchair, recliner, bed; with occasional dinner table activity.

14
Aug
10

not much new

still weak and exhausted, two-finger typing = no new blog post.




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