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Roller Coaster - Hospice or Not...

SilentRenegade's picture
SilentRenegade
Posts: 123
Joined: Sep 2013

Last Monday my mom called my dad's PCP because he decided to stop eating and drinking and was falling... this was right after we saw the oncologist the Thursday before. They put him in the hospital for failure to thrive. 

His PCP called my mom and I to speak privately. She suggested we stop all treatment and go on hospice. I was slightly relieved that he wouldn't be starting Stivarga, but it slowly sunk in what that meant. We went to his oncologist and he said why didn't you start the Stivarga? What happened? We explained. He then said if you don't want to do chemo, you should call hospice. He said it nicer than that, but that's the gist. Drove an hour and a half for a 5 minute conversation... 

In any case, I was a mess, because it finally hit me. Also, being 8 1/2 months pregnant doesn't help...

So, all of a sudden, the next day, he started eating and drinking again on his own, the cough he had went away, and he now can get around fine... Explain that one.

CT scan shows 2 larger liver mets (2-3cm each), 1 right lower lobe lung met (2cm) and three left lower lobe lung mets (less than 3cm each). Around the biopsied tumors, there are mini-mets. That's the extent of it... no other evidence of disease, fluid, etc. Lungs have no fluid in them. There is one slightly enlarged lymphnode in his lungs. He hasn't had chemo since August 2015. 

Hospice came today to evaulate him and said they didn't think he needed it... They suggested HomeCare - somebody would come out once or twice a week and take his vitals. He liked that. He now is being weird about the hospice thing even though he was all for it before. 

The eating and drinking issue is from brain and neck radiation. This apparently takes a while to resolve... he's about 3 months out, not even. 

He told me today he enjoys it when he proves them wrong over and over again and now has a goal to prove them wrong again. Let's see how this goes... 

beaumontdave's picture
beaumontdave
Posts: 1101
Joined: Aug 2013

Hey, making the arrogant, high and mighty doctors look bad by surpassing their predictions, is a pretty good motivator for us guys, so if that's what makes him battle this stuff, so be it. Sometimes being ornery is useful...............................Dave

SilentRenegade's picture
SilentRenegade
Posts: 123
Joined: Sep 2013

Haha... It's so true. His doctor called him stubborn and non-complaint. The nurse today said that can be a blessing and a curse. 

Helen321's picture
Helen321
Posts: 1424
Joined: May 2012

I wish there was a like button because stubborn and noncompliant is sometimes all you haveWink

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

He's pretty tough! I hope he hangs in as long as possible and enjoys a good life while he does. Good luck to him!

Lovekitties's picture
Lovekitties
Posts: 3355
Joined: Jan 2010

It appears at the time the PCP and oncologist recommended Hospice your dad was in serious condition...not eating, not drinking, falling.  Those are all signs that can signal the body has determined its own course.  Hospice is normally recommended when a patient is seen as having less than 6 months to live. 

Since he has now changed, it is more possible that he was depressed to the point of giving up.  The rebound is great, but keep an eye out for it to recur if his physical abilities begin to go downhill. 

For now, put the Hospice option in the background.  If it needs to be considered again, remind him that their help can be terminated if he should choose to restart treatment, and that their assistance is not only for him, but also those who love him. 

My sister was "no Hospice" but changed her mind when she became unable to be out of bed, and she recognized that we as her family could not give her the extra care that she needed and deserved.  We only had their help for about 5 days before she passed, but their care was invaluable.  I have heard others who felt they did not get what they needed or should get from Hospice, and that is a shame, because there are some wonderful folks out there in that organization.  You may want to speak with your local Hospice on your own to get a detailed understanding of what you can expect from their care, just to have all the facts if it should come up again.

Everyone hopes to prove doctors wrong in how much life there is to live.  I hope that your dad is one who proves them wrong.

Hugs,

Marie who loves kitties

SilentRenegade's picture
SilentRenegade
Posts: 123
Joined: Sep 2013

I love the hospice folks. They've come before for home care after his thyroid surgery and his stroke. They released him both times. When she came yesterday she said he'd probably be released again based on how he's acting. I think the depression hits the nail on the head - he didn't want to go on Stivarga, it scared the **** out of him (as it did me... Just read some of the **** it can do) and he shut down. Once he was "released" from that option, he decided he can do it himself. We will see. In the grand scheme of things, and all the cancer tha has already went away, Im not sure if I'd be surprised. he also admitted he's not thinking completely straight since whole brain radiation. So I also wouldn't be surprised if he changes his mind about something - pursuing another opinion, talking to his radiation oncologist (another he proved wrong), etc. he's still stuck on the thyroid cancer. He said that was much worse in terms of fear than the colon cancer. 

Trubrit's picture
Trubrit
Posts: 5337
Joined: Jan 2013

Many of us fear death, and when it is apporaching SLOWLY, we fear it even more. 

Sometimes its a great thing, when death takes us quickly. Us, meaning the person who dies, not those left behind. 

Your dad is dying, and he knows it. Wether he is scared and that motivates him to keep going, or onery, or (and this is my bet) loves you all so much he is going to make it, just as far as he can. 

I bet that baby in your tummy is helping him no end. Congratulations, by the way. 

But, when push comes to shove, it will come to an end, and none of you will be ready. So fight when he fights, and call in the backup when he hits his low points. 

I pray that your dad gets to see your new bundle of joy. What a blessing!  And I pray that you will all find peace, when his battle is finally over.  And the human spirit cannot be denied, sometimes. He may live to see other grandbabies. That is the mystery of life, for the most part, you can't predict when its going to end. 

SUE

SilentRenegade's picture
SilentRenegade
Posts: 123
Joined: Sep 2013

I think its that, for sure. They said he's got a bit at this point... hell see the baby. Obviously any of us could die tomorrow - cancer or not. I will say, his other goal... Is to go to his old oncologists office and flip him the bird and walk out in a couple of months. I said maybe if you focus on that it'll happen. 

Helen321's picture
Helen321
Posts: 1424
Joined: May 2012

I'd like to flip my surgeon the bird.  I think we should have an official cancer bird flipping day.

beaumontdave's picture
beaumontdave
Posts: 1101
Joined: Aug 2013

"Helen, hell on wheels........ain't no body else gonna no the way she feels........Helen, hell on wheels........and they never gonna take her away".  Sorry, just popped into my head, probably gonna be singing it all afternoon now. Wings, by the way............................Dave

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Some words of wisdom:

1. Never flip the surgeon the bird before the operation.

2. Never insult the waiter before you get the soup.

(and of course, never learn the hard way.)

Be well,

John

 

 

 

SilentRenegade's picture
SilentRenegade
Posts: 123
Joined: Sep 2013

Hahaha... These are quite true.

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