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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8 Responses to “Details”


  1. 1 kevin
    August 21, 2010 at 5:33 pm

    Hi Julie and Brian,

    I wish could reach through the internet and give you
    a huge hug. There are no words I can put here that would be of much help or add any
    new revelations. Just know that I am touched very deeply by what you’ve written today and I was
    reminded of a similar situation in which I was sitting where you are now. It is so surreal
    to read the words (hospice, liver, stage IV) although my experience was nearly ten years ago.

    You have every right and reason to cry, I allowed myself that just now as well (I always fight
    that emotion at first but sometimes fighting it is useless, this is one of those times). It can
    be cathartic in the moment, but then you have to go back to living with someone you love
    with your all, and be as helpful, brave, and nurturing as you can. Hospice is a blessing
    and I am an huge advocate for that particular part of the medical process and I feel that you
    will be fully supported and Julie will have additional care for daily events (highs and lows).

    Since you have your work and so many other things to attend to as well, I offer any
    thing that I can possibly do for you and Julie. I am a good dog walker, I mow yards, errand-boy,
    bale hay (well maybe not that one) but I simply offer whatever Julie and you may need. I also
    realize how tiring and draining company can be as well (from the above mentioned past experience),
    so this is a “non-personal” offer and by this I mean distance can separate the participants if
    needed 🙂

    I may not think about that time ten years ago as often as I used to, but I do recall that each day
    does have the possibility for magnificent joy, even when it seems the most least likely to occur.

    Kevin
    jikido@gmail.com

  2. 2 Cathy
    August 21, 2010 at 7:46 pm

    Julie I want something, and chocolate isn’t fixing it. I want so badly to fix this. I can just let you go. I want to not cry. I want to be strong and laugh. I want to be whatever you need. I want to tell you how much knowing you means to me. I want to trade places with you. I want you to live and two king sized Hersey bars hasn’t made a dent in what I want. Maybe I should have given them to you.

    Love You.
    Cathy

  3. 3 Kelly
    August 21, 2010 at 8:36 pm

    Brian & Julie,
    Just wanted to let you know you are both in our thoughts & prayers. We are clearly too far away to offer much in the way of help, but know that we are thinking of you and send all our love. Take every advantage that hospice can offer, I know many people who have benefited greatly from their services (patient & loved ones, both).

    Love to you both,
    Kelly, Justin & Shawn

  4. 4 margaret Stonich
    August 22, 2010 at 5:09 pm

    Dear Brian and Julie,
    Brian, your email made me break down and cry. There is nothing I can say to help or bring comfort. I have been the eternal optimist and perhaps I didn’t want to realize and understand the situation. I know that you are both well loved and supported which must bring some comfort. I have been on the “patient” end and not on the caregiver end of things. I almost believe it is harder to be the caregiver and the one that is left. I have a dear husband as well as Julie has you. I am not sure of your spiritual belief system so the last thing I want to do is offend you. Please know I am praying for you and think of you both often. I have another friend that was in a similar situation to Julie (Hospice) was called in. She is still terminal but she feels better everyday and this crisis is over and she has been given some more time with her loved ones. If that is what Julie wants, I wish that for the both of you.
    Please tell Julie I am thinking of her daily. Thanks so much for posting on her blog. I am sure I am one of many who appreciate this.
    Margaret Stonich

  5. 5 David S.
    August 22, 2010 at 11:21 pm

    Hi Brian,

    Please tell Julie I am enjoying the records very much, and I still have the What A Guy coffee cup that she gave me about 15 years ago at work. This stuff seems trivial now, but it’s a link to good memories with good people, and that’s got to count for something.

    I can’t – or don’t want – to imagine what you’re going through. My thoughts are with you. Take care, and if I can bring anything that would help on my lunch break while at Weiss/Tosoh, just let me know.

  6. 6 Lynnette
    August 23, 2010 at 11:25 am

    And we cry with you. Literally.

    I have been far too silent while you guys have struggled through this. I did not realize the cancer was at stage IV. Hospice is a truly wonderful thing while going through this stage of life. My family experienced it with the Mt. Hood Hospice here on the east side. They made our situation with my uncle so much better that my other uncle (his brother) donates in each of our family members’ names as his Christmas gift to each of us. We are all honored by that. Hospice is such a blessing both to the patient and the caregiver. I am certain they will be a blessing to both of you.

    Julie, I wear my SupportingJulie shirts proudly. I am still supporting you, especially with this latest decision. You have been so strong and such a blessing while fighting the Cancer foe. Thank you for the inspiration. I love you and pray that you get stronger by not having to leave the house for your appointments.

    -Lynnette

  7. 7 Nathaniel
    August 24, 2010 at 10:46 am

    Dear Brian & Julie,

    Growing up in a Martin household the phrase “life isn’t fair” has been constantly drilled into my head, but this is a bit extreme. Julie, I’m glad we had a chance to talk, even if briefly, during your last visit. You’re such a cool lady, and the love that you and Brian share gives hope to us all. I have only the fondest memories of you,(Carnelian Room comes to mind) and thank you soo much for the joy you have brought into this family. Now, where can I get my SupportingJulie T-shirt?

    Love you guys,
    Nate

    • August 31, 2010 at 9:56 pm

      Julie’s coworkers made up the tee shirts for the annual Breast Cancer Walk in 2009 (2008?). ‘Fraid they’re out of stock, especially in “tall”. Thanks for checking in. -B.


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