Archive for August 21st, 2010

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.




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