What do I say? My stepdad has cancer :( - Post 35update

[JerseyJanice]

Oh, how devastating! I am so sorry for your stepdad and all his loved ones.

This is a very hard thing to face, but while he is still able, he needs to get his house in order. Usually, a social worker at the hospital will talk to him about things like getting a DNR (Do Not Resuscitate) order signed and a will drafted with his last wishes.

It's hard to predict how long his battle will be, but he should do these things quickly, just in case the fight is a short one.

Saying a prayer for y'all, and hoping for the best.

 

[zalansky]

OP - so sorry to see the news and yes, you have gotten some great advice. I lost both of my parents to cancer...so you know how I feel about cancer. First, definitely don't avoid calling. Not knowing what to say and calling anyway is better than not calling at all. After they get a prognosis and if its far along, hospice is incredible. I have mixed feelings about treating people with terminal cancer with chemo and radiation, so I will keep those to myself! Its a very scary time, just take it one day at a time. Its all we can do.

About the house, it sounds as if there are liens against the house due to past medical bills? Thats not good either. Its just a mess, OP, and I am so sorry for all of it for you and your family. Many, many hugs!

 

[sandramaac]

Yes, I am almost positive you are describing esophogeal cancer. My father passed from it 2 years ago, after a two year battle. However, he was 82 years old.

First, I do hope that they have sought a second opinion. If the diagnosis is being made just on a scope and biopsy, then it is not totally complete. Scasn (usually pet or ct) need to also be performed to see what extent the cancer may or have not spread. They also need to find out which type of eso. cancer it is. One form is more aggressive than the other. Then based upon those results they can try to fomulate a treatment plan. Based upon how far spread the cancer is, his present health status and a few other factors, doctores may recommend anything from chemo, radiation and chemo to if he is a candidate and the cancer has no spread, surgery to remove the esophogus followed by more systemic treatment. The above treatments also based upon how far the cancer has spread my be considered curative or pallative, meaning if it has not spread they may be able to rid him of cancer, or it may be just give him a better quality of life, until which time the cancer takes him. Other procedures necessary duing the treatment of this cancer may also include them putting a port in for the chemo, as well as a feeding tube into his abdominal regions so he may get food and nutirents while the esophogus is getting radiation. During that pat of the treatment it will be vitally impossible to swallow any food.

This is a very aggressive cancer. And the treatment is difficult. If the cancer is far spread, and his choice is not to pursue treatment then hospice is the choice. If you have nay other questions, please let me know.

 

[raysnkaysmom]

Good news and bad news....

Adenocarcinoma (of the esophogus) is the diagnosis
Cancers that start in gland cells are called adenocarcinomas. This type of cells is not normally part of the inner lining of the esophagus. Before an adenocarcinoma can develop, glandular cells must replace an area of squamous cells -- which is what happens in Barrett's esophagus. This occurs mainly in the lower esophagus, which is the site of most adenocarcinomas.

The good news is, the CT scans shows it has not spread elsewhere and all his bloodwork came back good....

The specialist will be in touch with him over the next couple days and talk about options... They have mentioned a stint/shunt for chemo dispensing, and trying to find ways to get him food. He has not been able to swallow any food larger than ice cream in over a month...
Between him being hard of hearing, and my mom having an awful memory, they aren't full of information

 

[raysnkaysmom]

Just going to copy and paste a portion of the letter I just sent my best friend, because it about sums it all up for today....

I didnt' realize her dad passed from the EXACT same cancer, but knew it was cancer, so didnt' really want to bring up old hurt to her... but we got to talking about his time frame (diagnosed in May, given 3-6 months, but lasted until Jan) he stopped chemo 6 weeks prior to passing, but she said the last 3 weeks were horrible

*****
I just got off the phone with my mom... I had gotten an email from her earlier saying they were going to the cancer specialist, so I called... She said they are tired of talking about it (dont really want anyone to know) but basically they told him that although the CT scans showed no other masses and his blood was good, they are running other tests to see if its spread to lymphnodes and something else I forgot..
They are going to start chemo in 2 weeks... They said they can't do it slow, as the doctor (who was point blank not optimistic) said, "It's an agressive cancer, we are going to bombard it like B52s, if we do it any other way, he wont' make it"
So... Bob told my mom that if the other tests show it only as the one mass, he will do it the doctors way with chemo... but if it has spread elsewhere, he said he won't do chemo. He'd rather die quick but not extremely sick, than last longer and be deathly ill.. I see his point, but hard for my mom to say, and hard to hear...
Then, yesterday, my mom had me crying, saying she wished it was her... She said because she doesn't have the 'zest for life' Bob does... She's content with what she has and what she's accomplished...her kids are grown and she doesn't have other ambitions. He has dreams of building his house still, loves outdoors etc.
The roller coaster of emotions is awful, I imagine 10x worse for them, and 20x for him.
I feel so helpless here...I want to go see them, but then it's like a 'last visit before he dies' thing..and I dont want that impression either.
He hadn't planned on coming to my wedding because he had to stay with the dogs (eyeroll), but I kept asking... and of course, now I especially want him to come. But, there is no telling a time frame.. he could be deathly ill in 1 month, in 4 months, in 2 yrs... or die of a heart attack at 80... who knows.


They dont' want to read anything because its all depressing, e ven the success stories (which are rare in this form of cancer)... but if you have anything you want to pass to me, I will read it...

 

[C.Ann]

I'm so sorry that your family is going through this..

You would think after spending 10 yrs. helping my late DH battle cancer - among many other serious health issues - I would be able to tell you "what to say", but I can't.. For the most part, we discussed it as a couple - privately - and then strived for "normal" conversations with everyone else.. Even sick people get tired of others looking at them with pity; being overly sympathetic; hovering; etc.. So I guess the only thing I can offer is to treat them as normal as possible and follow their lead.. If they want to discuss it, they will - if not, just try to keep things as normal and upbeat as possible..

Hugs to all..

 

[can84]

I'm so sorry . . . all I can say is I was in the same position you were in recently. Please PM me if you ever need anything.

 

[raysnkaysmom]

Thanks for the well wishes.... just wanted to give an update.

More tests have shown it has also gone into his stomach. Originally, he had said if it was anywhere else, he wouldn't undergo chemo. My mom has talked him into giving it a go.
On Monday, they will be doing an echo to see if his heart can take treatment (he's 68 and doesnt have the greatest physical heart)..
Tuesday, he goes in to have a feeding bag placed in, where he will stay hospitalized for 3 days.
He will start chemo and radiation the following Monday, and it will last for 6-8 weeks. The doctors said *if* he makes it through chemo, they will see if the mass has shrunk, and if so, they will try to operate. They will be removing his entire esophogus AND stomach . Chemo may have to be redone following that surgery, in which he stays in the hospital for 3 weeks and home bedrest for 2 months. They aren't sure if he'll make it through any of that, but thats the optimal outcome.....
Doesn't sound good

Of course, with all this timing, my wedding is not in the cards for them to attend ~ That said, I'd like to go visit next week, before chemo starts and to help my mom get some stuff together... ANyone know of a way to find cheaper tickets? Standby or whatever? The least expensive I've found is around $600....

Oh.. and my mom and stepdad got remarried on July 3rd ~ Found out the issue was with his SS and my moms disability they made $180 too much monthly to qualify for Medi-Cal medical coverage, so they divorced. That meant if something happened to him, the state would posess his possessions to pay his medi-cal coverage ... So, now if they lose the coverage, so be it. He starts chemo in less than 2 weeks, and regardless of what happens, my mom will now get to keep her home

 

[ahutton]

http://www.thewellnesscommunity.org/

This place is a God-send. They have physical locations as well as online support, information resources and they are beyond awesome. It is a place filled with hope, information and assistance for those diagnosed. They came into our office and did an informational session when our company did a service project with them.

They have a ton of information on their website, including a section for newly diagnosed, the have online support groups, and a lot of people who are in the middle of these fights participate in their groups.

 

[LuvOrlando]

I'm heartbroken for you, take care of yourself

 

[raysnkaysmom]

http://www.thewellnesscommunity.org/

This place is a God-send. They have physical locations as well as online support, information resources and they are beyond awesome. It is a place filled with hope, information and assistance for those diagnosed. They came into our office and did an informational session when our company did a service project with them.

They have a ton of information on their website, including a section for newly diagnosed, the have online support groups, and a lot of people who are in the middle of these fights participate in their groups.

thank you....
my best friends dad died of the same thing and sent me another great link.
Right now, though, they are kind of doing the 'stay away from online stories' thing, because no 2 diagnosis are the same, they read the horror stories, the bad prognosis and then the few triumphs in between. They have such a range of emotion daily right now that they've opted to put online research and support on the back burner.
For, me, on the other hand....its great. My sister isn't ready either

 

[ahutton]

Wellness Community is about survival and positive spirit, so it can be a very good place for information and to learn about the drugs, treatments, and what to expect without hearing the horror stories.

 

[minkydog]

Thanks for the well wishes.... just wanted to give an update.

More tests have shown it has also gone into his stomach. Originally, he had said if it was anywhere else, he wouldn't undergo chemo. My mom has talked him into giving it a go.
On Monday, they will be doing an echo to see if his heart can take treatment (he's 68 and doesnt have the greatest physical heart)..
Tuesday, he goes in to have a feeding bag placed in, where he will stay hospitalized for 3 days.
He will start chemo and radiation the following Monday, and it will last for 6-8 weeks. The doctors said *if* he makes it through chemo, they will see if the mass has shrunk, and if so, they will try to operate. They will be removing his entire esophogus AND stomach . Chemo may have to be redone following that surgery, in which he stays in the hospital for 3 weeks and home bedrest for 2 months. They aren't sure if he'll make it through any of that, but thats the optimal outcome.....
Doesn't sound good

Of course, with all this timing, my wedding is not in the cards for them to attend ~ That said, I'd like to go visit next week, before chemo starts and to help my mom get some stuff together... ANyone know of a way to find cheaper tickets? Standby or whatever? The least expensive I've found is around $600....

Wow, this keeps getting worse and worse, doesn't it. I don't know when your wedding is scheduled, but have you thought about maybe having a very small wedding at your parents' house and then proceeding with your bigger wedding at it's scheduled time? I'm sure your mom and stepdad would be so grateful for the opportunity to see you married, in your dress standing with your new husband. You could probably arrange for it in the local hospital chapel or at the bedside. Even if you didn't have the license,et al, I'm sure a chaplain would be willing to marry you. ANd then you could just proceed with the legal wedding at a later date.

Don't know if that makes sense, but its the first thing that came to my mind.

 

[Disney Doll]

Wow! That's a big surgery! Do your parents understand all the ramifications of that surgery? Please, please, please make sure they do. I am a nurse, and I truly do not know if I would have anyone I loved go through that surgery. Please PM me if you want some idea of his post-op state.

 

[raysnkaysmom]

Just giving an update...
I'm flying out this morning to go see my stepdad. He's been undergoing chemo once a week for 3 weeks now, and radiation 5x a week. My mom said he is extremely skinny, very weak, and depressed most of the time

Doctors told my mom last week they may have to stop the chemo because his body isn't strong enough for it... it's rough from what I've gathered.

Right before the chemo started, he went fishing a couple times with my sister, they had some good times. Lately, his moods go from melancholy to downright mean. I can't imagine what that feeling would be like...

Some of the side effects of the medication, feeding bag and whatever else has been an issue with bowels...he's been hospitalized twice because of it.. backing up in his body. Disgusting I know, but cancer is disgusting
I'm trying to mentally prepare myself to seeing him, going to dr appts daily and being strong for him. He keeps asking my mom about 'what if i dont make it' or 'they can't fix it can they'...I hope I say the right things...

 

[teskak]

I am so sorry. Maybe you will have to have the courthouse wedding and give your stepfather permission to go home.

Leave a place for him at your reception to reflect the place he holds in your heart, but sometimes the mountain is too high

 

[Ms Lion Queen]

I am so sorry. Saying prayers for you and your family

 

[raysnkaysmom]

I am so sorry. Maybe you will have to have the courthouse wedding and give your stepfather permission to go home.

Leave a place for him at your reception to reflect the place he holds in your heart, but sometimes the mountain is too high

We live cross country from each other....I am flying out alone due to flight costs and work/kid schedules....

I am having videography at my wedding..I will be sending that out to them ASAP...

 

[Disney Doll]

"Sometimes the mountain is too high..."

I like that.

OP, if his body truly cannot tolerate chemo, then there will be nothing to do but comfort measures for him.

Make the most of your visit.

 

[4nana]

I am so sorry to hear thing aren't looking up for your sDad . Sadly both of my parents suffered with cancer, so I know this pain and my heart and prayers truly go out to you. My Dad's was esophogeal and he fought the beast for years, but sadly lost his battle 7 yrs ago . Praise God my dear Mom is an 17 yr BC survivor. You don't have to worry about what to say dear, your love and support and just being there for them is what they really need. Godspeed