Update on Dad, for those who care to know
#281491 - 09/10/06 06:41 AM
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atomic rose
Reged: 06/01/04
Posts: 7013
Loc: Maine (IBS-A stable since July '05!)
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Well, I got back on Thursday from a week and a half down in NJ, spending time with my dad. I'm so glad I went, and got to be with him for a while before he gets sick and weak, but don't be fooled for a second - it was hard. So hard that all I've done for the past 2 days is sleep and gorge myself on bad food. I know I'm not coping well, but I don't know what else to do.
The doctors have found spots/tumors on his stomach, esophagus, liver, pancreas, left lung, spleen. The stomach/esophagus tumor is definitely cancer. He had a PET scan on Thursday that will hopefully show that the rest of it isn't cancer, but I'm really afraid to get my hopes up too much.
They're starting him on chemo ASAP.
His doctors are all very optimistic that he'll pull through this just fine. That makes him feel better, which is good, because keeping HIM positive and optimistic is so important. I, on the other hand, don't trust doctors as far as I can throw them, so I'm just plain worried. Constantly, night and day.
Thanks for all the good thoughts and wishes and whatnot... it's comforting to know that so many people are pulling for him - that kind of energy's gotta count for something!
*hugs* to everyone!
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My heart goes out to you and your family. It's a really hard time, I know. Please know that you still have a "family" here if you ever need us. Big hugs to you and yours!!!!
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Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
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I know it's hard, Casey. I sometimes think that cancer patients' families have almost as hard a time as the patient - and they usually get less support. I'm not sure there is a good way to cope with this, so do the best you can. Things will settle down once the first shock and grief ease up a little.
I'll be thinking of you and your dad and hoping the spots outside his stomach/esophagous are just that - spots. I know what you mean about not wanting to get your hopes up too much, but you wouldn't believe how many of my perfectly healthy organs have spots, dents, and dings on them.
I have lots to say about oncologists - almost all of it good. If you want to talk about it, drop me an email. Here I'll just say that you always have the option of a second opinion and if you and your dad decide you want one, I'll be happy to pass along what I know about docs in New Jersey and Manhattan.
I'm hoping chemotherapy goes as easily as possible for your dad.
Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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I hope everything goes just as well for your dad as the doctors say. Try not to freak too much about the PET scan -- I've heard it's often very common to get false positives. I know, I know, easier said than done.
Worrying/coping is exhausting ... take care of yourself. Best wishes for your father's recovery.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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You and your family are definitely in my thoughts, Casey. My email box is always open if you need someone to talk to!
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Melissa
Friendship is thicker than blood. ~Rent
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I can't even imagine how hard this is on you. Take good care of your dad, but don't forget to take care of you too.
HUGS
Cassandra
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up! 
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Big hugs to you and your Dad Casey! I continue to keep your family in my prayers!
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I hope things go smoothly for your Dad. Take care of yourself too.
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Casey,
I am so glad that you were able to spend time with your father. Don't be so hard on yourself about eating the wrong things. You are going through a lot of stress right now and sometimes it helps to just be able to eat whatever you want. I know that probably would sound silly to someone who never has to think about what they eat.
I have been through cancer with my FIL and my MIL. It is difficult on everyone. Lots of worry and stress is normal. You are there for your Dad and he is very lucky but remember to look out for youself too. There is tons of info out there on cancer and chemo either on line or books. Do research so that you are informed, remember information is power especially when it comes to our health.
I will keep you, your Dad and your family in my prayers.
You have my e-mail if you need to talk.
Love and hugs,
Janey
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Janey
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Casey
#281536 - 09/10/06 11:59 AM
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_Willow
Reged: 04/06/05
Posts: 2090
Loc: Canada.
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It's really good to hear from you. I'm so sorry your poor father is going through such crisis. That has GOT to be awful to witness. There but for the grace of God go I, for now anyhow. You are in my thoughts and prayers as is your dad. We'll be pulling for him.
Keep your rest up and nourish your body, and try to nourish your soul however you can at this time. It does make a difference.
We all love you. Take care!
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Keep on keepin' on...
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Casey...I send you love and support during this incredibly difficult time. I trust that you have family and friends you can draw on...and of course all of us here that love you!
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Amy
IBS-A
Stable and thankful!
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Hi Casey. You and your Dad and families are in my thoughts and prayers. It is so great that you did/can spend the time with your Dad.It is great for him , for the support. If the Dr.s are optimistic try and believe in them. Especially if your Dad believes that he will get well. I know it is hard to be with him when they are sick, but try not to worry to much or get to stressed because you know what will happen. He will need you through the rest of the treatments. I can relate to what you are going through. I went through this with both of my parents and I will always be grateful for the time I spent with them through their sickness and their better days. Take care of yourself and don't beat yourself up for allowing to gorge on bad food because it happens to everyone. Eat, get it over with and get on with your day! Prayers are with you and Dad! Sue
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I'm sorry ...
#281572 - 09/10/06 08:32 PM
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Double J
Reged: 03/09/06
Posts: 900
Loc: High Rocky Mountains ibs-d
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It's a terrile thing ... we are praying for your dad and for you.
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 Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow”. Mary Anne Radmacher
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I'm so sorry Casey. I can only imagine how hard it was to see your dad. I pray the dr. are right but I can also understand you not trusting them. Here' a (((hug))).
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I'll keep you in my thoughts.
My grandfather is going through a tough time now, too. He is 85 and we just found out he has cancer pretty much everywhere in his body. He has a number of other medical conditions as well and he is too weak for chemo, so we are just keeping him comfortable. It is very difficult to deal with. I am glad to hear that your dad has a good prognosis and I'm sure everything will turn out just fine. You and your family are in my thoughts.
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>>>>>>>><<<<<<<<
Michelle
IBS-A, pain predominant
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I can't imagine how hard this is on you and your dad. I'm wishing you both the best. I've known a few people who have come away from cancer better off. I pray that your dad is the same.
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***********************
IBS-A, with bloating and gas as my predominant symptoms
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Oh sweetie, thats got to be so hard. If you dad is anything like you, than he is a fighter and that will help. I can't think straight right now myself but I doubt there would be too much I could say to make you feel better anyways. We are here for you...sending many hugs and lots of love for you all.
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Taking it one day at a time.....
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{{big big hugs}} sweetie.... I know this has go to be very hard. Your Dad is so lucky to have you. I don't know who above mentioned it, but yes....read up on whatever you can. You, Your Dad, & your family are all in my toughts.... you know where to find me (for anything)...
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www.facebook.com/shell.marr
www.myspace.com/shellmarr
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This has got to be very tough on you. I just want you to know that I'm thinking about you and hoping for the best for your Dad. Take care of yourself.
Barbie
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Big hugs, Casey! Include my energy with all the rest! I've been thinking about you and your dad, and I'm hoping that everything turns out fine.
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Cancer sucks. Period.
{{{{{Hugs!}}}}}
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Christine
Those who can do; those who want it done better teach.
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Sorry I'm not replying to everyone individually, but since I was an idiot and burned my hand pretty badly in the kitchen yesterday, it hurts to type, and I have to keep this kind of short. 
The good news is that the cancer hasn't spread as much as they feared. The bad news is that it's definitely in his liver too, inoperable, metasticized, Stage 4. That's bad. They're still starting him on chemo ASAP, but the best they told him to hope for is that it'll ultimately make him more comfortable and give him a couple more years - liver cancer pretty much always comes back.
I'm getting pretty depressed. I also think I've gained another 10lbs in the past couple weeks from comfort eating. :P Sheesh.
Anyway, that's the update... probably the last one for a while, now that he has a solid diagnosis and treatment plan.
Thanks again for keeping us all in your thoughts and prayers... it's really been comforting to me to know that so much good energy is heading Dad's way.
*HUGS* to all!
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Oh sweetie, that just sucks. I'm so sorry. I wish I could do something more for you and your family. Please let us know if we can help in anyway. Love and hugs
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Taking it one day at a time.....
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I'm so sorry to hear the cancer has spread, Casey. I know this has to be so hard on both you and your dad.
Please remember, though, that 2 years is a lifetime in cancer research. There is simply no way to know what new treatments will be available that far down the road.
Take care of yourself - take care of that hand - and if I can help or you just want to talk, you know how to reach me.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Thanks, Sand!
#281756 - 09/12/06 08:31 AM
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atomic rose
Reged: 06/01/04
Posts: 7013
Loc: Maine (IBS-A stable since July '05!)
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I did mean to reply to you personally further down the thread. Dad seems pretty happy with his doctors so far - this is actually his second oncologist, his first was a Dr. Wu, and he didn't like him one bit - but this new oncologist seems good. He toyed with the idea of going to Sloan-Kettering, but he's done a ton of research (it's basically all he does in his free time now), and it seems that Sloan wouldn't really do anything differently than what his current team of doctors are doing.
Still, I will keep you in mind if he suddenly decides he wants a third/fourth/etc opinion... because he might, depending on how the chemo goes.
I'm having an especially hard time with this because a friend of mine lost her father to stomach/liver cancer. They tried chemo on him, but it wasn't long before they sent him home with a prescription for morphine "to make him more comfortable", and a month later he was gone. I do have to keep reminding myself that that was 15 years ago, and they HAVE made advances in treatment in that time. Chemo isn't the same as it was back then. So yes, I'm fighting to be optimistic about this.
Thank you again, Sand.
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It does sound bad, but I'll continue to hope for more positive things to come. Please take care of yourself.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Re: Thanks, Sand!
#281775 - 09/12/06 09:39 AM
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Sand
Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)
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You're more than welcome, Casey. If your dad's oncologist is a good doc *and* your dad is happy with him, that's the best possible combination. As for Sloan-Kettering, I agree: if I was looking for cutting edge, experimental treatment for a rare type of cancer, they'd be at the top of my list. If I needed a standard cancer treatment, I'd stay closer to home. (And think how much it says about how far cancer treatment has come that I can talk about a "standard" treatment.)
I'm sorry about your friend 15 years ago and I can understand why that would make this even harder for you. But 15 years truly is a long time. Fifteen years before I was diagnosed, at least two and possibly a third of the four treatments I got didn't even exist.
Take care. I'll be thinking of you and your dad.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Re: Casey
#281780 - 09/12/06 10:07 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Would it be possible for you and your dad to have a little weekend trip before he starts chemo? Maybe rent a boat for the day or take a little drive to see the fall colors. Just a little something in case the chemo makes him sick. I think a little quality dad/daughter time would be great. Please don't be offended by this, you know I care for you but I also know you are tight on money. If you need a little financial help to plan a little trip, we could all take up a collection to help you out. I'm sure we would all be more than happy to help out. You have been so wonderful to everyone here and its terrible to know you are hurting so. Love and hugs
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Taking it one day at a time.....
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Well, I just got off the phone with him, and now he's thinking he might call Sloan for another opinion, just because. I told him to go for it. Honestly, though, he lives SO close to NY, in a very well-off area... I know these aren't true indicators of the quality of medical care, but I'm pretty confident that his doctors are good for what he needs. And you're right - it's almost funny that we can talk about "standard" cancer treatment as opposed to thinking it's all rare and untreatable, but his IS standard, even if his doctor calls it "incurative".
Thanks again. When it's so close to home, it's hard to keep it in perspective, that it isn't an automatic death sentence. I needed that.
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That made me smile... but it's not necessary at all. Thanks, though!
I just talked to him and said I'd be more than willing to come back down, but he told me not to. For now, he wants to play it by ear and see how the chemo goes. He's actually talking about coming up HERE again, maybe in a few weeks, when the fall colors are at their best here. He says he'd far rather aim for that than have me drive back down again, when I came back from there not even a week ago... but if things don't work out, he knows I'll go back down in a heartbeat.
Thankfully, I've spent a lot more time with him this past year than most of the previous ones... because he and my stepmom bought a house up here, they've been up a lot. I'm going to remember *that* as our together-time, because even though he hasn't started chemo yet, his doctors are forcing him to take it easy and not do things, so he's already not quite himself.
I'm babbling. Sorry about that. LOL
*hugs*
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Well I'm glad you have been able to spend some good time with him lately. I know how hard the chemo can be on people but they have also come out with some new drugs to combat the side effects so hopefully he will get through it without too much difficulty.
I remember seeing pictures of your area in the fall before and it is very beautiful. I live in Mi but live in the suburbs so its not nearly as pretty as the country side by your house.
Maybe you guys could plan a trip to a cider mill, thats one of my favorite things to do in the fall. Honestly, if I can help with anything please let me know. Babble all you want, you deserve it! Love and hugs
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Taking it one day at a time.....
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Sending a bigger hug and prayers for you and your Dad. As long as he has started treatment it is better for him. As for your hand, ouch. Take care of it. go easy on yourself as well. Take care . Sue
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BIG HUGS, atomic!
#281862 - 09/12/06 02:17 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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I'm so sorry for this devestating news. He is lucky to have you in his life! I know you are a great comfort to him.
{{{{{{HUGS}}}}}}
~nelly~
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but at least they are talking treatment.. my uncle refused to do more then surgery when he got diagnosed and has been going downhill rapidly sense..
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Dietetics Student (anticipating RD exam in Aug 2010)
IBS - A
Dairy Allergic
Fructose and MSG intollerant
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Chemo is really awful ... I hope that he is handling it okay.
And how are you doing?
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Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow”. Mary Anne Radmacher
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I was going to post a quick update today anyway... there wasn't any news until last night.
He starts chemo on October 2. He'll get it for 5 days in a row, then he'll be off (no chemo) for 3 weeks. His doctor is confident that he'll do well with it, and because he's young and strong, they're giving him 3 drugs at a pop instead of 2. He's really nervous about it - he's heard or read online all kinds of horror stories about people dying from the chemo - but I've told him that his chances are better with it than without!
He had a liver biopsy (just confirming things) and also had the "port" put in for his chemo at the end of last week, so he's sore and cranky - heh - but other than that, he's doing ok for now.
I'm doing ok - hanging in there. It's going to sound awful, but I'm trying to not think about it... you know, brooding and getting more depressed isn't doing either one of us any good. So I'm getting on with my life, such as it is.
Thanks for asking about us!
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I think you have a good plan. You are right, getting yourself worked up and depressed isn't helping anyone!!
I had a liver biopsy a few years back and man, it hurt! I bet he is sore and cranky!  Sending well wishes that he will do just fine with the chemo! Does he have some cool hats in case his hair falls out? Maybe you could knit him some funky stocking caps since its getting colder!
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Taking it one day at a time.....
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Hehehehe
#283013 - 09/19/06 08:54 AM
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atomic rose
Reged: 06/01/04
Posts: 7013
Loc: Maine (IBS-A stable since July '05!)
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His hair falling out is the biggest joke going right now. Dad started losing his hair when he was 30, so all that's left is a tiny bit around the back of his head, which is almost completely white, and he keeps practically shaved. So of course when he went to the oncologist's, he took off his hat and asked if he was going to lose his hair.  That's my dad!
I thought I'd wait and make sure that his sense of humor stays intact, but yeah, I'm planning on at least one REALLY silly hat - I don't even care if he ever wears them out of the house, as long as he gets a laugh out of it. I know I will! LOL!
He was mostly cranky about the biopsy because everyone he talked to said it wouldn't hurt!
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Re: Hehehehe
#283017 - 09/19/06 09:03 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Yeah, they told me it wouldn't hurt too and damn, it HURT!!!!! 
I think a funky hat is just what he needs! Like you said even if he never wears it, it will make him smile! Who knows though, your dad sounds like a character, I can see him wearing it to the local hardware store just to see what sort of reaction he will get!
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Taking it one day at a time.....
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I hope your dad does well, Casey. And I'm glad you're doing okay -- I know how hard it is to have a sick parent. I don't think your method of coping is awful -- if it helps you and doesn't hurt others, there's nothing wrong with it. Whatever gets you through the night.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Chemo ...
#283185 - 09/20/06 10:52 AM
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Double J
Reged: 03/09/06
Posts: 900
Loc: High Rocky Mountains ibs-d
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I have a good friend on chemo right now, 5 days, 1 week off, then 3 more days. For the last 2 months. And he has lost some weight but really is handling it extremely well physically. So tell your father to hang in there, because it truly does get better.
He will need some emotional support from all who love him so stay in touch with him. And take care of yourself ... many folks need you around.
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Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow”. Mary Anne Radmacher
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