Boyfriend’s Scan Results

[islandgirls]

So his scans were finally put up on MyChart last Friday. Please tell me your thoughts and note that the liver, spleen and osseous lesions were there since his first scan on February 1st. The node in his lung is thought to be the primary.

IMPRESSION: 1. Mixed response to treatment. The 1.5 cm lobulated right

hilar pulmonary nodule is stable. Multi station lymphadenopathy in the chest,

abdomen, pelvis and bilateral inguinal regions are stable, mildly increased or

mildly decreased. Splenic lesions have increased in size. Metastatic osseous

lesions are mostly stable but a few appears slightly increased in size and

sclerosis.

2. New nonspecific small pericardial effusion.

3. Stable 1 cm soft tissue nodule in the pancreatic tail, possibly a

splenule. Continue attention on follow-up recommended.

4. Mostly stable tiny hypoattenuating lesions in the liver. A couple in the

right hepatic lobe appears slightly more conspicuous. It is unclear if this

is secondary to slight differences in scanning plane/phase of contrast versus

slight enlargement. Attention on follow-up recommended.

I have his permission to share for first-hand feedback... Thanks!

[LexieCat]

It sounds like what the radiologist said, "mixed" results. But this is why I prefer to wait till the oncologist can explain them--what they actually mean. Is it time to switch treatments or do we give it more time with this regimen?

The good news seems to be that any progression (if that's what it is) hasn't been dramatic. 

I'm pretty sure none of us here is gonna be able to tell you anything more.

[islandgirls]

He already had met with the oncologist last Monday before these were posted on Friday...

Just curious as to how all of you would  have reacted to this scan.

[Judy M2]

What does the Impressions section say? In any event, I would rely on what the oncologist says. They are the ones with the expertise.

[Rower Michelle]

Agree with Lexie- I know it’s been difficult for you since the daughter usually goes to the appointment. Could you check the doctor’s note in the portal?  

[islandgirls]

The impression is listed above.

Oncologist said he would suggest gemcetabine and right now, he is not a candidate for a trial due to his poor performance status. Pain from bone mets (which were radiated Wednesday), no appetite, lost 24 lbs since Feb. 1st and anemic. Suggested taking a break to rebound from treatment.

Drum roll..........

Daughter called in Hospice and moved Boyfriend into her house. 🤦🏼‍♀️ 

This is where we are... 

Boyfriend didn’t really comprehend what happened because he told me doc said he was waiting to start a different treatment. I was like, well according to his notes (remember I’m not allowed to go to visits as daughter doesn’t want me there), your daughter “who has power of attorney” said you want no further medical treatment and are interested in hospice... so there are no more treatments on the horizon.

I read him the scan and he started crying and said his daughter said the cancer was progressing so quickly... I asked if either of them or if doc mentioned if the spleen lesions that grew slightly could be pseudo progression... of course not! His mood instantly lifted when I read the scan as really most everything has decreased or is stable.

Talk about being on board the Titanic!

He does not want to move in with her but “my days are numbered and if this is what she wants then I’ll do it.”

I asked, “What do you want to do?” And his reply was that the treatment only made him worse and no other treatments are available since he can’t do a trial.

I replied that he cannot do a trial until he starts to eat, regain strength and then he can join one. Which last night he did say, well maybe so will get my appetite back because I just saw a pizza commercial and thought hmmm that looks pretty good. (Food commercials have made him sick for a month.)

But last night on the phone, he was super aggressive with me as the daughter had texted me earlier in the week asking me to stand behind their medical decisions (not standing behind HER decision to call in Hospice after THREE treatments and no evidence of major progression). He said, “Every day you tell me about something you read on the Internet about people surviving or a new treatment, well where are the stories of people who didn’t make it?” 

He was opening his mouth and the daughter was coming out, as in the text she said, “I’m upset with you because every time Dad comes home from your house he has a different mindset, and starts asking about other treatments.” Swear to God!! I was like, how dare he try to save himself, I mean shame on him for not accepting the death sentence you have spelled out for him...

So warriors, thank you for all of your support, but if he is waving the white flag, my only choice is to head for the lifeboats and just accept his decision.

Unfortunately his decision is being influenced by a very uneducated person. Who happens to be a nurse, remember!

My only hope is now that he is done with treatments and has radiated the bone mets, that he will regain strength and perhaps start thinking clearly.

💜

[LexieCat]

Honestly, I don't know what to suggest at this point. Of course, none of us can say whether more/different treatments would make a difference. I'd keep trying, if it were me; you'd keep trying if it were you; but ultimately, it's his decision. Just throwing out one thought to consider--given how things are going, how would YOU feel if he has a showdown with daughter and things go south and he's estranged from her?

People make all kind of decisions that turn out not to be great. I was just going though some old journals from 20-some years ago, and holy crap, did I make a lot of bad decisions. I'm lucky my life turned out as well as it did--it would have been a lot better if I'd done things differently. Still, they were my decisions and I'm grateful I was free to make them (as bad as some of them were).

Only you, of course, can decide what YOU can stand for your own emotional health--whether you hang in as he goes down this path or whether you need to step away for your own well-being. I think either course is reasonable. I'm just not sure how continuing this battle with the daughter would play out for everyone.

Just my two cents--it's always much easier to be objective about someone else's problems than it is my own.  Sending a hug.

[Judy M2]

I'm very sorry for your situation. I think you've done all you can for your BF, and you've come up against a brick wall. It doesn't sound like you'll be allowed to see him if he's with his daughter. Try to make peace with everyone, including yourself. If he is under hospice care, you might want to try to reach out to the social worker or chaplain who can give you some comfort. (I'm not sure if you'll qualify as a family member but it's worth a shot.) Take care of yourself, you've done your best. 

[Tom Galli]

Islandgirls,

My you've got a very complicated "people problem". There are, in my way over simplified view, two basic kinds of people: the Barbara Streisand people who love people type, and the people who like things. I'm in the latter camp, and the most basic explanation for why is because things don't talk back! Thus I am ill equipped to offer people problem suggestions. It occurs to me, that another reason for my preference and perhaps my choice of an engineering profession, is I can generally make things do what I want them to do! 

Lexie's advice suggesting only you can stand for your emotional health seems to be on point to me. It is perhaps beyond time to attend to your needs.

Stay the course.

Tom

[LouT]

Islandgirls,

It seems that our group is unanimous that it is time for you to start looking out for yourself.  We have so much less control over most things than we believe we do.  And then we stress over things that we cannot do anything about and pay a heavy price.  Sometimes the AA Serenity Prayer is a keeper as it states "God give me the serenity to accept the things I cannot change.  The courage to change the things I can and the wisdom to know the difference".  To my mind the philosophy is fine, regardless of what your higher power may (or may not) be.  Perhaps the words can give you the basis for an approach that will at least save you in this difficult situation.  I hope for the best for all of you involved, but only you can provide the help for you.

Lou

[TJM]

So sorry girl. Here is my two cents.

Tell him you are backing away because you dont want to watch him suffer since he doesn't want to fight anymore. Tell him you love him then back away. It might shake him up?

BTW...there are plenty (way too many) old posters who did not make it. We aren't fanatics here and completely understand our predicament. To bad he doesn't just check us out and lurk for awhile.

Peace

Tom

[islandgirls]

Thanks, all.

it’s been a helluva two weeks... I have just accepted that I have done everything I can to assist in his fight.

Now that he’s been at the daughter’s house, he’s like a Stepford Wife... it’s unbelievable the things coming out of his mouth.

Sunday we had a scare. He had spent the weekend with me. Complained of lower chest/rib pain Saturday night. Woke up Sunday in excruciating chest pain, hurting the most when breathing in... I remembered some of you talking about a PE. Called the exchange as  I wanted a “trail” to justify an ER visit, as I knew Daughter would flip. Boy. Is that an understatement!

He called to tell her what was happening: I’m in severe pain and going to the ER.

Her response?

You are not ALLOWED to go to the hospital! You are on HOSPICE!!

No, oh my gosh, where is the pain? I’ll meet you there, etc. Nope just worried that he may receive treatment to delay his death!!

He shut her down and we went. I left when she got there. Guess what? He declined scan or chest X-ray... Funny how he did not decline any labs or EKG that occurred before she arrived... of course she didn’t want any scientific proof of what may have been causing the pain. After all, a PE could have been treated, again delaying the accelerated death that appears to be her agenda.

it is insanity. Like a bad Made for TV movie.

So tonight he said “you gotta lay off Daughter” and I replied that any child who screams at her father for seeking medical care probably is not being accosted by me... hopeless

Now the daughter has arranged a meeting for me to meet with the social worker, the Hospice nurse and herself... without asking me by the way, and set it up for Friday... but basically meeting with me to “get me on board.” More like putting me in front of a firing squad.

Ummm. Yeah. Not getting onboard the death train.

But I’ve decided to go to the meeting with a typed affidavit of sorts of the events leading up to the point where my Boyfriend received a relatively good scan (mostly decreased and stable) which spawned Daughter to call in Hospice. One part of me says it is not necessary to defend my position, but the other says it’s important for my own closure with her. She has been much worse than the cancer. Let’s face it, she is the cancer!

I will continue to take the high road, with my message being that I want what’s best for Boyfriend.

Then I will continue to accept his fate, as I have from the beginning. But the funny part about fate is, you never know what exactly will happen... still not giving up hope. 💜

 

[Judy M2]

So sorry to hear this development. The social worker should be able to help you come to terms with the path forward that your BF and his family have chosen. Take advantage of their family resources for your own sake. 

The comfort drugs hospice provides include morphine. Don't hesitate to use it when your BF has pain like that. It's what it's there for. If your BF has anxiety, they can treat that too. You want him to be comfortable above all. 

This situation is going to take a toll on you. Watching a loved one suffer is difficult and distressing. Take good care of yourself however you can. 

[LouT]

Islandgirls,

I defend your stance of bring data to this meeting.  At least you can present it and they should have to respond to it in practical terms that make sense.  Just remember to keep your emotions in check.  I've negotiated with powerful people on very high ticket items and can tell you that the more you keep emotions in check the more effective you'll be.

My last bit of advice is this; "go there with no expectations!"  There is no bar to hit or other metric to achieve. Your only goal should be to hear what is going on from the other side and present your data for consideration.  You cannot fill the space your boyfriend occupies and if he is compliant to the family you are only going to suffer by trying to change that dynamic.  

Good luck to you on Friday.

Lou

[Sandy N]

This might sound mean and probably way out of line but in reading between the lines here, it's almost like the daughter is of the mindset that if he's going to die then hurry it up already.  She seems a little too quick to pound the nails into the coffin.  My stink-o-meter went up pretty early in this thread.  If he's seemingly not taking what your thoughts are into consideration, other posters' advice to back off is very wise and, while this is heartbreaking for you, you definitely need to take some self-preservation steps for yourself.  Sorry if I'm being pessimistic but I've seen this thing going to heck in a handbasket as this conversation has progressed.  Wishing you peace and the comfort in knowing that you went above and beyond the call of duty and anyone would have been grateful to have you in their cheering section!  Please continue to keep us posted!
 

Edited to add:  Not saying that his family "wants" him to die but it's like they've relegated themselves to it and that it's imminent or something.

[islandgirls]

@Sandy N You nailed it. I giggled at stink-o-meter. It is just a torturous, heartbreaking situation...

I decided to not go to the meeting. Why be ambushed? And why am I suddenly being included in his “care” when she, well THEY, never had the courtesy and respect to previously include me?

Quite frankly, I’ve turned a corner and am in the “Gotta look out for #1” mindset.

I had typed a very (non-emotional @LouT) letter to email to the social worker and hospice. However I am so out of the loop that I don’t know how to reach either of them. Called his Oncology social worker and left two messages. Took a quick peek on MyChart to see if they were listed and saw this message from social worker that said I had called and left a message:   
MD team was previously instructed not to share information with patient’s girlfriend by the patient and his daughter.

Wow. I am on his HIPAA. That he signed. So there you have it. So obviously at the ER visit, I was removed... and yes, he was morphined out of his mind, but sorry, no excuse to not TELL me.

Losing him to cancer is heart-wrenching. Losing him to him being coerced and being a wimpy weasel is a whole new ballgame.

So now I am faced with exiting instead of him being the one to leave. In a non-cancer world I would never stand for this deception and disrespect. Not sure cancer trumps that!

But want to share that you all have every ounce of positive energy in me directed towards you all being NED survivors. Again, I never would have made it this far without you. 💜

[Sandy N]

It is indeed heartbreaking and it's got to be just difficult when you are being compelled to take the back seat to this without anyone even giving your opinions a consideration.  Good call on not going to the meeting.  I'm going to guess that this all of a sudden including you is either to relieve themselves of some future guilt and/or placate you, neither of which is necessary.  I think you have adopted the best attitude in looking out for #1 right now because you, too, are hurting and the sadness you must be feeling is excruciating.  Shocking you are still on his HIPAA.  🤐

Maybe the best way for you to move forward is to just make your decision whether to participate or not whenever (or if ever) you may be invited to do so.    This way you're not totally closing the door on him but you are also calling your own shots as well.  You wouldn't be cutting him out of your life but not immersing yourself in his family's drama either.  You'll know that you really did try to be the voice of reason, they all had their own agenda, and you tried.

[Judy M2]

Well said, Sandy. I don't have much to add but I wish @islandgirls some peace over this awful situation. 

[LouT]

Islandgirls,

There is only one person you can directly care for, keep healthy and help to get through this difficult situation and that is you.  I'm so glad you've come to this conclusion as well.  I wish all the best for you and that your pain is short-lived and weakens every single day until it's gone.  

Lou

[islandgirls]

You guys are just the BEST! @Sandy Nit’s like you are in my brain. You spelled out my every thought and planned action!

[TJM]

Good luck. Such a sad story. I agree it's time to look out for #1.

Peace

Tom

[Sandy N]

12 hours ago, Judy M2 said:

Well said, Sandy. I don't have much to add but I wish @islandgirls some peace over this awful situation. 

Me too.  She deserves it.

[Sandy N]

12 hours ago, islandgirls said:

You guys are just the BEST! @Sandy Nit’s like you are in my brain. You spelled out my every thought and planned action!

You just discovered my super power - LOL!

[islandgirls]

[LouT]

Right back at ya' IslandGirls...