In Which I Go Total Mommyblogger Up On Your Ass
Rain Into Rainbows Or Something

The Decision Is In

85-family-portrait

My dad has decided to try the chemo "one more time." If it knocks him down again, he'll quit. But not yet. Not yet.

They'll likely be removing one of the more hardcore drugs that was likely responsible for his bad reaction -- though that hardcore drug is absolutely necessary to fight a cancer as advanced as his, so at some point it has to go back into the treatment, so...

*rubs temples, sighs wearily*

(For the record, because it's been linked/emailed so many times, I have indeed read this article by Atul Gawande on hospice vs. aggressive treatment for terminal illness, and I forwarded it to my mom and quoted it to my dad and encourage everybody who hasn't read it to go do so right now, this second, even if you aren't currently dealing with end-of-life decisions. Which is kind of the problem. We don't want to think or talk about this stuff until we're in thick of it, when it's already past the point when we should have said "enough, stop.")

(Also, when I look at that picture I wonder if my 7-year-old self inadvertently invented the Snuggie, and whether I would have a valid claim to a few spare million blanket-with-sleeves dollars. Hmmm. INTERESTING.)

Here's to a happier post on Monday. Fingers crossed, but I really feel like we're due, you know?

Comments

Candy

I know it's exhausting, but I guess your dad just isn't done yet. I have to admire his fight. Thinking about you and your family (and I'd totally get Snuggies on the phone RIGHT.NOW.)

Hi, I'm Natalie.

*sending thoughts of sparkly unicorns and fairy dust and sex dreams starring Taylor Lautner*

Hope you have a good weekend...

Mel

I walked this road with my mother-in-law and felt like I was banging my head against a wall. I ultimately decided I could help as best I could, but it was her journey and I was merely a witness. Eventually, she stopped the punishing and fruitless treatments, and when it was over I knew I had done my best.

Gretchen

My dad tried some treatments for his myeloma, and then decided to stop when it was obvious they weren't doing much. And in the end, it was..... okay. As much as it could be. His right to choose what he wanted to do was respected, he was himself right up to the end, and it was quiet, not scary. And still very hard to shake the feeling that somebody should DO something. I am so sorry you have to go through this.

Pat Henson

Having a more compassionate Dr. is key.
My Mom's Dr. talked to her and suggested Hospice. She took him at his word and it made all the difference in the world. She had wonderful, compassionate nurses,Chaplains who came to our house to talk to her and sing hymns to her. She took on a calmness I couldn't believe. Her last days were pain free, peaceful and full of love and family.We were there beside her when the end came. Thers was immence sadness, but also acceptance that her days were as good as they could have possibly been. I will for ever be grateful to Hospice for being there. My prayer is that your Dad can find this peace. God bless you all.

Beeeee

I'll continue to include your family in my prayers. I know the "let's try one more thing" philosophy of cancer treatment, and it's a ridiculously hard road. I am hoping for the best for all of you.

Kathy

Amy, I am so sorry you and your family are going through this. I have read you for years and never commented because I didn't have anything funny to add! However, I had to thank you today for sharing that link. It had a profound effect on me and I know I was meant to read it today. A total stranger's heart is aching for you right now.

Amanda

My mom did the same thing. She felt like she had to try. Then at least she'd know, she'd have that piece of mind that she tried.

Strong people, man.

I like your drawing. Especially the totally radass border. I can just see little you going, "You know what would be even better than stars? HEARTS, FLOWERS and stars. This is going to be so COOL." And you were right. Very cool.

Amanda

My mom did the same thing. She felt like she had to try. Then at least she'd know, she'd have that piece of mind that she tried.

Strong people, man.

I like your drawing. Especially the totally radass border. I can just see little you going, "You know what would be even better than stars? HEARTS, FLOWERS and stars. This is going to be so COOL." And you were right. Very cool.

Parsing Nonsense

Your Dad's a very courageous guy, and his heart's in the right place. When the end does come, even after all this preparation and fore-knowledge, it'll still feel like it's coming out of nowhere. No matter how prepared you are, it'll still be the biggest sucker punch of your life. Because you always feel like they should have had more time.

Shannnon @nwaMotherlode

It makes me wonder what I would do ... if I was in your dad's shoes.

Love to all.

Cat

I found your blog a few months back and I've been following it since - your writing is fantastic. I just wanted to tell you that I really hope everything works out - I've been in that situation with my grandfather and I know how hard it is. You've definitely got a support network out here in the internet.
Good luck with your situation. You'll make it.

(I wish I'd commented before this, it'd be a lot less creepy :) )

a

Seems like your dad is not the type of guy to go down without a fight. That makes it more difficult for everyone else (because everyone knows that he's going to lose the fight - we all lose eventually), but he gets to be the one to make the decisions. Sorry that you're the one having to stand back and watch - feeling ineffectual makes everything worse. I hope that the end of your dad's life is as dignified and pain-free as it can be.

Jenna

My best friend has terminal cancer. He is 33 years old. I too read that Gawande article and although it was difficult, I showed it to my friend so we could discuss his option. Right now he is on a medication which buys him extra time, but when it stops working his last option is invasive chemo. My opinion is that he should not spend his last few precious months tethered to a chemo drip and miserable all the time. It's so, so hard though, and in the end it's his decision and I will support whatever brings him the most comfort.

Peace to you and your family, Amy. We are all walking through this with you.

Jessica V

My fingers are crossed for you too - have a good weekend!

Crabby Apple Seed

Hope you and your family continue to hang in there- I thought of you after the Phillies no-hitter, hoped it brightened your dad's day a little bit.

drhoctor2

The man is going to make his own choices. I'm sorry that it's all painful for your family. You are a good daughter.

Amanda B

I've walked this road - unfortunately too many times. Our parents have had private conversations about this - things we'll never be privy to knowing. This is his journey, a terrible one at that. Praying for all of you.

Hannah Hawley

I am 28 years old. I have an advance directive. I have in writing, in a legal document, how I want my care handled should I know longer be able to make decisions for myself or think clearly. The best way for others to know what you want and to follow what you watn is to fill out one yourself! http://www.caringinfo.org/stateaddownload

Christine

Fuck cancer, f'reals.

Wishing you and your family a lovely weekend. If your father is feeling up to it, and you can go of course, give him a hug from us.

Diane

Amy, having gone down this road many times, my heart goes out to you.

Thank you for the link to the article. I wish I had seen something like this when my parents were dying. It is so helpful going forward.

Hugs!

Mermil

People don't understand that talking about the choices they might face as the result of a terminal illness or catastrophic injury is the most loving thing they can do for their families. No one should have to live with the question, "Did I do the right thing?" when it comes to stuff like this. There's so much anguish in the entire process, that letting your family know that, yes, this is what I want, is vital. I know you don't agree with your dad's choice, but you love him enough to allow him to do what he's gotta do, as horrendous as that is. You will never have to wonder if you forced your dad into a decision he did not want. That is love. Maybe it's the dark side of love, but it's love nonetheless.

Irma

I agree, FUCK cancer. An attitide of defiance is very important, particularly in the person who HAS the cancer.

But I am also the girl with two parents who passed on far, far too early.

You are in the right mode. There's a lot to be said about holding hands and kissing brows and saying what's in your heart. I never had that opportunity.

My God, if I could only have my Daddy back for thirty seconds, what would I tell him, how much love and appreciation would I cram in to those seconds. And I would say, "Daddy, don't leave me, I'm not ready. But if you have to go away from me? I love you and I know you love me and will stay with me in a`different way."

(a year after my parents died, my son and I were in a very VERY bad car accident on the highway. We rolled the car three times, ended up upside down in a ditch full of water in the winter. Not ONE thing was wrong with either of us, despite the fact that my car was totalled. My "dead" parents took care of us, I swear.)

I am praying for all of you daily. There is never a right answer, never a right way to behave. So just trust what is in your heart.

sharon

I'm sorry your Dad still wants to make that choice but it is his to make. Will keep fingers crossed that the results are not so traumatic. Try to find a few moments for yourself Amy if only to catch your breath ;-)

Aimee Greeblemonkey

I am so scared I am going tone right there with you, and some point, sooner than I want to be.

Please know I am here any time you need a shoulder.

Also, sidenote, another friend us going through this with her mother, and got a journal filled with questions to prompt them to write down memories while they are still lucid to save for the kids and such. Just a thought.

Rachael

Lots of thoughts and prayers for all of you.

Kacie

I am thinking of you and your Dad EVERY day. I know how hard it is to be positive in a situation like this. The best thing you can do is be present for your parents, whether it is physically or over the phone. Talking to people is what made my grandmother feel better. She refused any kind of treatment and it was very apparent that she was withering away, but she was ok with it. Your Dad seems to be at peace with his decision to give it another shot. If he has another bad reaction...it wasn't meant to be and he will probably be at peace with that. Please let me know if we can do anything. Love you all! Hugs.

Sheryl

That article is EXCELLENT and I immediately ripped it out and sent it to my mother, who has been part of the end-of-life decisions for so many older people in her life.
I'm so glad you got to read it as well and that you posted it here.

Avitable

I love that drawing. Keeping you and your family in my thoughts and hoping for a positive Monday.

Lumpy badger

I hope you have a good weekend, and something happy to report on Monday. And I hope the chemo is as gentle as possible on your poor, brave dad. Be strong. You'll get through this, eventually.

sharon

I have walked this road with my mom (ovarian CA) and my dad (esophageal adenocarcinoma). I wouldn't wish cancer on my worst enemy. You and yours are in my thoughts. Sending you strength as you stand by watching.

Sharon

Martha

Oh, Amy. I know we haven't been in touch for quite a while, but I just stumbled upon this and I'm so sorry to read what your family is going through. My thoughts and prayers will be with you guys.

not supergirl

Wow. I needed that article right now. I am coming to realize that I am likely the person in my sister's life who will have to help her do this when the time comes. We recently learned that her melanoma has metastasized to her lungs and bone, and possibly her liver. (I feel guilty even typing this, like I'm confirming that it's there.) She's considering a clinical trial, though the odds are strongly against her seeing any direct benefit from it. I understand the motivation of doing it just in case, and I also understand the motivation of doing it because it helps science and may benefit someone else with melanoma in the future. It's all such a struggle. She isn't afraid of death, but she's afraid of leaving her kids, husband and other family members and friends behind. And I'm afraid of her doing that, too. Wow, denial is sure a strong thing, isn't it!?
All my best to you and your family.

Katie

I clicked to that article and am torn between saying thanks, that was super informative and it will be really helpful in the hopefully far away future, and saying THANKS because now I'm reminded that young people get sick and die and I'm all overly anxious about it and hugging my boyfriend and telling him not to die.

My grandpa had hospice care at the end of his life. (After surviving waaaay too many types of cancer it was emphysema that won.) (FUCK. CIGARETTES.) We were able to say all the important things, and had amazingly kind nurses, and when he passed away his whole family was in the house and then we sat in a circle around the bed so he wouldn't be alone.

I'm thinking of you guys.

tracey

Sending you so much love and so many good, peaceful thoughts for your dad's health...

Tina

Praying for you and your family, Amy. And, that is an AWESOME drawing of your family from 1985. How did I not realize you are an only child? I can only imagine how happy that drawing would make me, if presented to me by one of my kiddos. Big hugs to you.

Andrea from Big Blue Momma

My BIL chose hospice over treatment, but I think if one doctor had given him hope that it would have helped in any way he would have chosen treatment over hospice. His cancer was a very rare one, most medical professionals we talk about it with have never even heard of it. Every doctor told him that he could try it, but that no current treatment helped. He was at peace with it, my MIL was not. I came to find out that it seemed to be generational. All those who knew my BIL's situation had an opinion. People my MIL's age and older seemed confused as to why he didn't try, even knowing there wasn't any hope. People my BIL's age and younger took comfort in the fact that he made an educated decision. My MIL still questions his decision, a year and a half after his passing.

When the time comes and he's ready, hospice will be there. Prayers and good thoughts to you and your family.

Broad

When my dad was going through the end, I persuaded him to try chemo one last time because I couldn't bear the thought of him starving to death (as that was what was happening), while my mom tried to fight it. I eventually won out, and the doctor gave him the treatment -- CHOP directly into the spinal cord. That was Friday; by Monday, the day they were supposed to insert the feeding tube, he started in with labored breathing. We took him home, and he passed that Thursday.

I mean, I don't know exactly what I'm trying to say here. I do know that when faced with the end, there was nothing I wasn't prepared to do to keep him around, but when I saw what the chemo did, I discovered I couldn't continue to hurt him. I guess I'm lauding you for having the wisdom to know when enough is enough. At any rate, I continue to wish your fam peace and love.

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