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#2806757 08/14/18 03:15 PM
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I've titled this new thread in honor of my good friend who is awake and extubated after a successful heart and kidney transplant! That this good man, who has always been a devoted husband and father, will live to enjoy his family and brand new granddaughter is making me very happy today.

And I've also titled it as a reflection of what so many of us go through here. I am in a new, unexpected life. And my heart has definitely changed, oddly more open but at the same time more guarded, if that makes any sense.

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My friend was walking a lap around the ICU the day after his surgery. Everything going well so far!

Meanwhile I'm in the green room waiting to play a gig in Rhode Island. Life is good.

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kml, I didn't realise you were a musician. What do you play?


Me: 48, XH: 42
T: 18 years, M: 15 years

EA/PA 1: 6/2012
EA/PA 2: from autumn 2012-present

BD: 5/2013
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i really wish the timing was better and i knew where your gig was - you're so close! I'd love to see you play!

xoxo


M 20+ T25+
S ~15.5 (BD)
BD 4/6/15
D 12/23/16

"Someone I loved once gave me
A box full of darkness.
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Continued prayers for your friend!


Me 52, H53
Bomb drop 9/29/2014
Divorce from XH final 12/17/2014
Marriage #2 12/31/2019
5 adult (step)daughters (3 from XH's first marriage, 2 from current H's previous relationships)
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Focus - I didn't become a musician until my ex left. Then I bought a drum kit and learned to play the drums in a pop-punk cover band. Then my singer-songwriter best friend started asking me to play with her, so now I play glockenspiel, vibraphone, and snare drum for her. (No vibraphone on this tour, its too big and heavy to fly with).

One last gig tomorrow night in

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In Middletown Ct

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Had the evening off so went to see BlackkKlansman at the movie theater. Highly recommended.

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Originally Posted by kml
Focus - I didn't become a musician until my ex left. Then I bought a drum kit and learned to play the drums in a pop-punk cover band. Then my singer-songwriter best friend started asking me to play with her, so now I play glockenspiel, vibraphone, and snare drum for her. (No vibraphone on this tour, its too big and heavy to fly with).

One last gig tomorrow night in


That's so cool!


Me: 48, XH: 42
T: 18 years, M: 15 years

EA/PA 1: 6/2012
EA/PA 2: from autumn 2012-present

BD: 5/2013
ILYBNILWY BD & left: 10/2015

OW conceived: 8/2016
Born: 4/2017

H filed: 7/2017
D final: 28/12/2017
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Had our last gig tonight, small venue but we got a standing ovation. We played a cover of an old Stephen Stills song that we just learned today and I was very satisfied with what I decided to play on it. Up until now I have always just played what I've been told, but this trip I wrote my own parts to a couple of songs and they were well received so I feel like I'm making progress as a musician.

On the bad side of things - CMM has something on his lung and I'm worried it might turn out to be lung cancer. Not a smoker but I think he had some history of second hand smoke exposure. Had his CT Scan today and his doctor called and scheduled him an appointment with the specialist. Hoping it will turn out to br something benign but it's very worrisome.

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Listened to it on youtube - impressive - go girl!


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Thanks. Video from last night or the Central Park gig?

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It was an older one, I will look for those others.


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Originally Posted by kml
Had our last gig tonight, small venue but we got a standing ovation. We played a cover of an old Stephen Stills song thOn the bad side of things - CMM has something on his lung and I'm worried it might turn out to be lung cancer. Not a smoker but I think he had some history of second hand smoke exposure. Had his CT Scan today and his doctor called and scheduled him an appointment with the specialist. Hoping it will turn out to br something benign but it's very worrisome.
Sending good wishes and healing energies.


On BD
H52, W50
T27, M26
S21, D23
BD-9-Mar-16
D-15-Jan-18 Final-19-Apr-18
I am a storyteller. The story may do you no good.
But a story is never for the listener. It is always for the one who tells
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Thank you. I can only hope it will turn out to be something benign.

On the good news front - my friend with the heart transplant posted pictures today and looks great! Discharge is being planned for Tuesday!

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Okay so, advice needed.

I like CMM and so far most things with him are grand. The problem is this:
He has a major issue that he needs to deal with. Something he has stuck his head in the sand, ostrich like, in the past that is now coming back to bite him in the butt.

And it feels like a problem for me. I took on so much of crazy ex-boyfriend's stress. I NEED CMM to handle his problem. I know it makes me sound like a bad partner - I'm not, really my problem is I can't not help and it adds to MY stress because I absorb the stress of someone else's problem.

Maybe someone here will have some practical advice for him about his problem. (The sooner he fixes it the better I'll feel).The story is this:
Born in the 1950's outside the hospital (rapid delivery). No birth certificate was ever made.
A military recruiter who became his "buddy" helped him enlist at 16 (he graduated high school early) by using a fake birthdate and assigning him some other person's Social Security number.

With his military ID and this social security number he was able to get driver's license ID and he has just used this false birthdate and social security his whole life. Has always paid taxes under this social security number. At some point the IRS contacted him because they had two people paying taxes under the same number and they somehow separated the accounts but he never went to social security to clear it up and get a new social security number. Now some problems are cropping up and besides, he certainly needs to get it cleared up before he's old enough to collect social security in a few years. And, god forbid, if his lung problem turns out to be lung cancer he might need to draw benefits eventually.

I do have a friend whose daughter had a similar problem - born in the ambulance, neither hospital or ambulance registered the birth, young dumb parents didn't do anything about it. She entered adulthood without a social security number or drivers license and it took years for her to clear it up. I asked him and he said our states office of "Vital Statistics" was where she started. But since CMM was born in another state, I'm guessing he would have to start there?

Aside from his military ID, he doesn't have much of a paper trail in his youth. His parents died when he was 20 and there was probate court so those records should contain reference to him being their son. No baptismal records. The schools he attended don't exist anymore, but I imagine he could get yearbook evidence of high school attendance from Yearbook dot com or some such. Only living relatives besides his kids are a cousin he has lost touch with and doesn't have contact information for. In the past I don't imagine it would have been such a problem but with all the anti-immigrant stuff in place today (he's not an immigrant btw) I think they'll scrutinize things much more thoroughly.

Anybody here who has ever dealt with such a problem before or has worked at Social Security who could offer any advice?

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How well do you know and trust him? Do you know his family yet? This is certainly not a common story and it would sound some alarms for me. More so that he has not atraightened something like this out at this stage in the game.


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I agree it's a weird story so I have google-snooped and I have confirmed as much as I can of his history - ex-wife and kids check out online, graduation from high school in Chicago confirmed, Masters Degree from Tulane confirmed, has his military ID and an old ID badge from when he worked at Qualcomm.

I couldn't find anything about his parent's death yet but his stories about them have been very consistent. I don't have details like their birthdates - if I did I probably could find more. I've recommended he send for their death certificates as that may be useful in his attempts to fix things. If he does then I could confirm that part of the story as well.

I would have thought the lack of a birth certificate strange if I didn't know the story about my friend's daughter not having one - and she was born in the early 80's! Maybe it was an African American thing as both fathers were black? Distrust of the system or just lack of awareness of the importance? Or maybe it's just something no one thinks to tell new parents who have a baby born unexpectedly outside the hospital?

I think I'm less concerned now about the story and more about the personality traits that led to him letting this go on so long. I do think he was worried he'd get in trouble and didn't want to rock the boat, but it also seems like he has an ostrich tendency. I think he was an ostrich in his marriage too, ignoring his wife's alcoholism until it became so bad he had to acknowledge it.

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just seeing this now - ive been in full blown move mode. glad the tour went well and your friend is doing so well post-op. re CMM - praying that theres nothing wrong w his lung. yes bizarre story; agreed ostrich tendency.


M 20+ T25+
S ~15.5 (BD)
BD 4/6/15
D 12/23/16

"Someone I loved once gave me
A box full of darkness.
It took me years to understand,
That this too, was a gift."
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Congratulations on your last gig with a standing ovation. Please to hear your friends' heart surgery good news. I hope that CMM lung scan comes back with good news.

Have you discussed with him about it? Could he be afraid that he sees it as an enormous task and he doesn't I is where to begin? If it's the case could the two of you sit down for 30 minutes to start with once a week then when CMM sees some results maybe you could be increase the time spent on it.

You are being supportive by telling him that he needs to do something about it, but as you pointed out you can't do it for him. Let's see this from a different angle if you weren't in his life he would have had to do it for himself, so yes you can support him and give him the courage to start this but you don't know all the infos only him. I'm sorry if I sound harsh and selfish in my thinking.

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No, that's how I feel too - I can't take on his problem. I have given him advice and gotten advice from Mr. Big Lots about how his daughter solved her problem. I do think he feels overwhelmed by it and I discussed with him how to eat an elephant. I also gave him some ideas about documentation that might be helpful - his parents death certificates, the probate of their will, his high school yearbook entry.

I think he was also always afraid he'd get in some kind of legal trouble, although any legal issue should really fall on the recruiter who gave a 16 year old boy a false social security number!!!!

He's a grown man and should be able to take care of business. I can support and encourage him but I've got too much on my own plate to do any more.

He sees the specialist tomorrow, I've given him questions to ask about the differential diagnosis but I am worried about the possible outcome. His father died of lung cancer.

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Well CMM saw the pulmonologist today and apparently it was somewhat reassuring in that she expected that if it was a pneumonia secondary to a tumor they usually would be able to see the tumor on the CT scan and it didn't look like that. Still they will do a bronchoscopy next week to rule it out for sure and to see wtf is going on in there.

That's good because if new boyfriend developed lung cancer I'd feel obligated to care for him but that would be a lot to take on after only 3 months of dating (or less - I don't remember exactly when our first date was but he does.)

He's very romantic and quite besotted with me. Interestingly, I'm a physical touch person and so is he - but he said that before me, he would always roll over after and sleep on his side of the bed. With me he doesn't let go of me all night. I guess it says something about his marriage?

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On a different note:
My singer songwriter friend that I play music with is FB friends with my ex (she's known both of us for over 30 years). She never sees him post (I don't think he posts much) and he never comments on her posts. She's not happy with how he handled the divorce or the kids after the divorce but she doesn't unfriend him.

She noticed yesterday that he "liked" a picture of herself with Marshall Crenshaw at this concert we played at in Central Park last week. Which means he's been seeing all the fabulous posts, videos and pictures of me playing with her in front of 4-5,000 people and being with all these famous musicians onstage. (Marshall Crenshaw LOVED our rendition of Femme Fatale btw.)

I'll admit - it gives us both a little bit of a thrill to think of my ex looking at her page, wondering how I so outpaced him musically!!! (he can play about a dozen Neil Young songs he learned in college on acoustic guitar but he always thought HE was the musician in the family!) Living well IS the best revenge!!!!!!!!!

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Who really could be disciplined enough not to think about someone they were with so long and wonder from time to time, what if? I love Marshall Crenshaw. Love that you are living your life. I remember being jealous of someone like you that I used to work with as I went home every day.

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Yeah I love Marshall Crenshaw too!

I found the silver lining in my ex leaving me and that was time for music. And no critical disbelieving spouse at home to rain on my parade.

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saw the clip - fabulous job !!!


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"Someone I loved once gave me
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I love your story kml. It would make a great movie...especially the part when your ex sees you succeeding as a musician!!! I just love it! Musician as a 2nd career!!! That is just awesome and so so inspiring.

A much better success story, then say getting back with a cheating ex that abandoned his kids and family.

You are one awesome lady. I say write a book!


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Originally Posted by bttrfly
saw the clip - fabulous job !!!


I tried to do some searches and found the concert I'm pretty sure you were part of in Central Park but can't find your clip. Maybe you can provide some keywords that might bring up one of these videos on YouTube? I'd love to see it!


DonH
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We played Femme Fatale - add that to your search Don.

Meanwhile - so CMM had his bronchoscopy yesterday. He's had a small nagging cough since we first started dating that was thought to be the residual of a case of flu he had late spring. He saw his doctor who prescribed antibiotics and took an xray which looked like pneumonia. When it didn't resolve with a couple of courses of antibiotics he got a CT scan which showed a 12 x 14 cm mass of uncertain type. Bronchoscopy yesterday did not show any endobronchial lesions (meaning no masses or tumors inside the large airways) and he did have a lot of impacted mucous which they cleaned out. Multiple needle biopsies and cultures were taken but we won't have the results until next week. Lung cancer of course is the big concern but so far nobody really seems to have a clear idea what this is. A sputum culture is growing some pseudomonas aeroginosa, a type of bacteria, but that might just be an overgrowth caused by his previous two rounds of antibiotics. Blood tests for ANCA-related vasculitis syndromes are all negative.

His father was a nonsmoker who died of lung cancer. CMM is also a nonsmoker but did have about four years of second hand smoke exposure in the military when he was young. I'm trying not to borrow trouble and just wait for the biopsy results.

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Many many prayers needed. CMM just diagnosed with stage IIIA primary adenocarcinoma lung cancer. It's bad folks.

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Oh my KML, how did this diagnosis happen so soon following your previous post? I recently lost a really good friend following stage IIIB CA. Is it operable? Has there been any mets? It I sometime worse having medical knowledge in these situations. So very sorry to read this. Please use us for any support you need and keep us intoned.


DonH
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WAW-EXW 55
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Bomb 6/20/05 / She Filed on 6/2/06 / Divorced on 10/9/06
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It's too big to be considered operable. 14 cm. Radiation and chemo.

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The IIIA staging is tentative - a PET scan and MRI will need to be done to make sure it hasn't metastasized , which would worsen the stage.

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i'm so sorry K ... chaga tea might help - as might turkey tails, to ease nausea. chaga is known to shrink tumors. we're here. let's hope it's encapsulated. xoxoxo


M 20+ T25+
S ~15.5 (BD)
BD 4/6/15
D 12/23/16

"Someone I loved once gave me
A box full of darkness.
It took me years to understand,
That this too, was a gift."
~ Mary Oliver
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No, not encapsulated and a positive lymph node. I'll definitely be bringing all therapies to the table. Luckily we have medicinal marijuana in this state. I've learned a lot about adjunctive therapies for cancer in the last three years, starting with a friend who had ovarian cancer three years ago (with a relapse this year).

I just feel surrounded by cancer in the last year. In addition to said friend's relapse, a med school classmate was diagnosed with stage 4 ovarian cancer in December, a friend who used to sing in my band was diagnosed with metastatic breast cancer, and the psychologist who sublets an office from me was just diagnosed with stage III ovarian cancer.

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KML what is your level,of medical,training. You've talked a lot about patients and such but I don't remember reading what you do. Are you an advanced practice nurse or???


DonH
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M.D. Double boarded in Family Medicine and Integrative Medicine.

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that's a lot to hold honey. {{{{{{{kml}}}}}}}


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BD 4/6/15
D 12/23/16

"Someone I loved once gave me
A box full of darkness.
It took me years to understand,
That this too, was a gift."
~ Mary Oliver
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I am so sorry to hear this. I know you'll take good care of him emotionally and physically in this time. Integrative medicine will be very important through his treatments.

Ugh, I am so sorry.

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(((((HUGS)))))))


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Sending you hugs and positive thoughts today. I know you will do whatever you need to do to take care of him.


Sit quietly, the answers will reveal themselves when you least expect them to.
The past is gone, the present is a gift and you need to focus on today, allow the future to reveal itself when it is ready.
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Btw bttrfly - I used to drink Vimergy brand Chaga as a substitute for coffee when I first gave up coffee. Are you familiar with that brand?

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I'm so sorry to hear this kml. This is just so sucky!!!! {{{{{{{{{{hugs}}}}}}}}}}


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Sending positive thoughts and prayers your way.


Me 52, H53
Bomb drop 9/29/2014
Divorce from XH final 12/17/2014
Marriage #2 12/31/2019
5 adult (step)daughters (3 from XH's first marriage, 2 from current H's previous relationships)
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Originally Posted by kml
Btw bttrfly - I used to drink Vimergy brand Chaga as a substitute for coffee when I first gave up coffee. Are you familiar with that brand?


I haven’t. I have a friend who is a mad wild mushroom harvester, so I get my chaga from him and throw a couple chunks in the crockpot with water and let it cook for at least ten hours then leave it on warm and drink the tea that way.


My mom had stage 3 adenocarcinoma in her lung and she’s now Been cancer free for four years so people can overcome a grim diagnosis. Positive mental attitude is key, as you know xoxoxoxo

For her chaga and acupuncture worked well


Edit - hopefully this is what you want - Cadet

Last edited by Cadet; 08/31/18 05:46 PM. Reason: fix post as per user

M 20+ T25+
S ~15.5 (BD)
BD 4/6/15
D 12/23/16

"Someone I loved once gave me
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Also I saw Paul Stamets at the international herbal conference a few years ago - he was amazing and his company is top quality you can catch him on YouTube I believe


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"Someone I loved once gave me
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Thanks bttrfly I'll check him out.

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Was your mom's cancer operable? CMM's isn't because of size - 14 cm

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Thanks Cadet - perfetto mwah 💋 xoxoxo

Kml re operable - no too large not as large as CMM’s but still big and was pressing on the aortic artery iirc

She did two rounds of chemo then they waited 5 months to see if it would shrink enough to save part of the lung - the answer was no so she commenced chemo and radiation for two months. She was 87 and amazingly cake thru it well

Her dr is now in Houston world famous surgeon for lungs I would highly recommend CMM consider a consult with him
He is the director at the Lung institute at Baylor... worth the trip outstanding physician.


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kml - Just saw this. Sending the biggest hug possible. ((((((kml))))))


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Thanks Andrew. It's rotten luck and I'm doing my best to give him a fighting chance. Just praying the further testing this week doesn't reclassify him as stage 4.

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So sorry to read about this KML.

CMM is lucky to know you. I hope the diagnosis doesn’t change to stage 4 after the new test results come in.


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MRI yesterday, PET scan happening right now - not sure when we'll get the results, but they will determine whether he's truly Stage 3 or has Stage 4.

Last night I watched as my son taught my boyfriend how to light a pipe to smoke marijuana. Something I never thought I'd see!

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Im sorry kml. My wishes for the best possible scenario for CMM. Really scary stuff you guys are dealing with. Health is something we sometimes take for granted. He must feel so much safer as s layperson having you to help navigate though.

(((KML)))


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{{{{{{{Kml}}}}}}}

xoxoxoxoxo


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CMM update: PET scan and brain MRI do not show any cancer outside the chest so still considered Stage 3. The pulmonologist who did the bronchoscopy had told us the size of the tumor made it inoperable but the oncologist seems to think it can be removed. An appointment with the surgeon on Friday should give a definitive answer. Surgical removal with chemotherapy ups his chances to a 50-60% 5 year survival. Trying to see if he can be included in a clinical trial looking at adding one of the new immunotherapy drugs to that regimen, but his disease isn't quite advanced enough we think.

It's only starting to sink in for him what this means. He seemed shocked this morning at an article that stated those 50% odds even though that's exactly what the oncologist told us Monday. Denial, and the difficulty taking in information after you've been given a diagnosis like this, is a powerful thing.

I'm seeing a little more of his interactions with his daughters and I have to admit, it's sad. As you recall, he left their alcoholic mother when the youngest was in her last year of high school. It happened suddenly, he called the police on his wife when she was drunkenly attacking him and when they arrived she falsely claimed that he had tried to choke her. (The police, whom he had called before, were familiar with the situation and didn't believe her, and she had no marks consistent with that claim. ) That was the day he left (he had been trying to stay until his youngest was out of school.)

Anyway, the girls seem to blame him because he was the "strong one" and should have been able to fix their mom (she was drinking three bottles of wine a day and not willing to go to treatment - also likely unfaithful.) However, they don't seem to be in much contact with their mother either. He refuses to say anything to "diss" their mother which seems noble but I think it has seriously harmed his relationship with them as they don't really understand what happened. And I suspect his response to their anger has been to just withdraw, which has further eroded their relationships (sometimes you have to be the strong parent who continues to contact even if they don't reply or reply in anger).

He tried to contact the girls a week ago about his diagnosis but only got through to one. I told him it wasn't fair to leave that one with the info and not try harder to tell the others. He tried calling them again Sunday night then sent them both a message. To the best of my knowledge they haven't replied.

I know this seems suspicious, like maybe they have good reason not to talk to him, but I honestly don't think that's the case. I think they're just mad the family blew up, and as we all know, it's easy for them to be mad at the competent parent at first for not fixing things. Also they're all in their early 20's and I doubt the gravity of the situation has sunk in yet. Maybe they don't even believe him and think it could be a ploy for their sympathy, I don't know. I know he was the dad who taught them to golf, took them to Hawaii every year even though his wife wouldn't go with, cooked all the family meals, was involved in their high school sports. Nothing suggests to me that he was anything but a good dad, maybe even an indulgent father.

What I do know is that he needs to fix this. I'm hopeful for his treatment but the reality is he could also be dead in a year. And that can't happen with him not being reconciled to his daughters.

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((((Ellie))))

What you do know is that you need to be a lighthouse for him. Whatever he needs to fix is his to fix and between him and his girls. I know that this is newbie speak but a lighthouse doesn't dash around trying to chase ships into the harbour.

Your job as someone who cares about him is to care about him. To hold him up when he falters. But the direction he travels is his alone to determine.


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CMM is my boyfriend - not my ex, not sure the lighthouse analogy quite applies. I am his partner in getting through this cancer diagnosis, but our relationship is still quite early. I need him to handle his relationship with his daughters but I think his ostrich tendencies are at play here. And from a strictly selfish standpoint, I'd like to see him fix his relationship with them - otherwise, he could die on me and I'll be the one stuck with dealing with these girls I've never met. ("Hi, I'm your estranged father's girlfriend you don't know anything about, where do you want me to send the body?"). I know it's not in my power but I certainly CAN point him in the right direction.

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Doll, did you look up the thoracic surgeon in charge at Baylor? He's brilliant and awesome and absolutely the best on this planet. If CMM's tumor can be removed he's the guy to do it. He goes where no one else will but doesn't take foolish risks and believe me the angels work on his side and through him. He's a gifted healer, not just a surgeon.

How are YOU doing in all of this? Are you getting enough rest? Eating healthy meals? Being the caretaker is very draining as you know. How can we support you in this? xoxoxoxo


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Keeping you and CMM in my thoughts and prayers. I hope that the surgeon will do the surgery and remove the tumor and then on to chemo. It sounds like his chances are good to have this done.

Please take care of yourself.


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Thanks all. It's not an issue if the difficulty of surgery so much as whether it will improve outcomes. In the past it wasn't thought to improve outcomes unless the tumor was small. Newer evidence on using chemo with surgery suggests it does improve outcomes.

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CMM is a good cook and a pretty clean eater so my diet is actually improved. The last two weekends have been full of stressful errands and taxes but this weekend is open and we plan to fill it with fun things - wine tasting, comedy club etc. I have a lot of support. Fortunately I am really good at just putting one foot in front of the other.

I used my DB skills this morning in helping CMM craft a reply to one of his daughters. He's well intentioned but I've learned so much here about the importance of validation. His default position is defensiveness but that invalidates the apologies his girls want for the pain and havoc the divorce caused in their lives. I had to walk him through writing a message that validated their pain and gave a true apology without defensiveness. It's sad to think that just because he lacked that simple skill things have deteriorated so much with his girls. He really is a good guy who wanted to do the best for his girls and tried to make up for the things their mom was lacking as they grew up.

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I'm just going to say it. You are a great girlfriend.

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Thanks Ginger. I am definitely going to try to get him past this impasse with his daughters. I mean, the reality is, while I am hopeful for a better outcome, he could also be dead in a year, and I wouldn't want his daughters to live with that unresolved. That would be awful.

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So, CMM update, Friday's appointment with the surgeon was scary. Apparently the main pulmonary artery goes through the tumor so a simple lobectomy is not possible - they would have to take the entire left lung. (Because if you just took the upper lobe with that artery in the tumor you'd be removing the blood supply to the rest of the lung).

This surgery has a 5-7% chance of dying within 30 days of the surgery (from the surgery itself or complications of the surgery). Compare that to 1% for a coronary bypass. frown

However chances for 5-year survival go up with surgery, from about 25% with just chemo/radiation to about 50% when you add in surgery. And apparently quality of life isn't bad even without half your lung if you don't have lung disease on the other side (he doesn't). I personally would have a very hard time making that decision to have surgery but he is leaning toward it.

I don't know yet if they will do chemo and/or radiation before the surgery. I'm secretly hoping that between chemo and all the adjunctive things I have him on, the tumor might shrink enough to change the surgery options. That would be a small chance but stranger things have happened. Right now I have him on almost everything that has any research as helpful for lung cancer: LDN, metformin, medicinal mushrooms, resveratrol, curcumin, alpha lipoic acid, hydroxycitrate, medical marijuana, colostrum, and am waiting on my order of Avemar.

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This is always such a hard decision with CA patients - and others I'm sure. I was talking with a longtime female friend of mine this weekend who has been battling stage 4 lung CA for about 18 months now. She's already surpassed the median one survival and is getting close to doubling it. Never smoked a single cigarette or anything in her life - still... In her case, all of the rather aggressive treatment and the many side effects that go with it have extended her life - and with decide quality as she was out at an Oktoberfest when I spoke with her. Not the case for a guitar player friend of mine who first started with symptoms about a year ago, was diagnosed in mid-October with Stage 3b and was dead by January 5th. In his case, his life was neither extended nor the quality improved with all of the treatment he went through. It's such a hard "guess" to know what to do.

I was really surprised to read your comment about the 30 day survival rate for CABG. I was then totally shocked when I read one study that showed that the 30-day mortality decreased from 4.07% in 1999–2000 to 2.44% in 2011–2012. So at least this one study shows it at nearly two and a half percent. For some reason I thought it was much lower than that. Clearly I was mistaken. Still, if it were me and I had the chance of being one of the 92 people out of 100 that survive the surgery and had a good chance at a longer quality of life, I think I'd opt for the surgery as well.

CMM is very lucky you came into his life. I know if it were me, I'd rather go through something like this with a loving, caring new female friend, girlfriend, whatever, than by myself. Bonus if said lady had solid medical knowledge. It's great you are stayng with him and helping him like this kml. You just really never know where life will take you.


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Yes, Don, that's another part of the hard decision - what if he's going to be that guy that is dead in 6 months - does he want to spend two of those months in pain recovering from lung surgery? Still, there are newer drugs on the market that aren't factored into the existing survival data because they've only been around a few years or are still in clinical trials. They may hold the key to a better outcome. We await the genetic testing on the tumor cells which may help direct his chemo.

We are trying to get out and enjoy life when we can - a little difficult because I have such a busy schedule already between work and other responsibilities. This weekend we took my mom and older son wine tasting, and went to a movie (Crazy Rich Asians which I had been expecting to be this hilarious funny movie but was really just a chick flick romance with a couple funny parts). But part of the weekend had to be spent on practical errands and medical research. I'm making sure lots of good sex is part of the equation because that has to be healing, right? wink

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CMM update: Oncologist appointment today. Upshot is - he'll have a biopsy of some additional nodes within the week. If those are positive too, then he qualifies for a clinical trial. The trial involves chemo first (and hopefully he'll get in the arm with Avelumab, one of the newer immunotherapy drugs) followed by surgery. My hope is that perhaps he might have a really good response and that the subsequent surgery might not have to involve taking the whole lung (note: this is MY hope, nobody is holding this out as likely, but I still think it might be possible). He's decided to do the surgery even though it likely involves taking the whole left lung and has a significant risk of dying from surgery (5-8%).

I'm working on getting him to send an update on his medical condition to his girls. He doesn't want to "burden them". I have to help him see that they deserve to know and the burden of him dying on them without them understanding the urgency of his condition (and hopefully reconciling) is not acceptable.

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I am keeping CMM in my thoughts and prayers.

He really should send an update to his girls. They need to be aware of what their father's condition is, especially after the testing is completed. I hope that you can change his mind on this.


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File under AWWWWW.......CMM made me lunch today for work - and put it in his Star Wars lunch box for me smile

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Status quo here for now. CMM had a pre-op appointment yesterday for the mediastinal lymph node biopsy which will be next Monday. Unfortunately, between now and then he has to go off of almost all of the supplements I have him on (because they almost all can thin your blood and therefore need to be avoided before surgery). I'll have to up the medical marijuana in the meantime.

He's nervous about it (even though this surgery is not dangerous like the pneumonectomy). I've taken the day off because he wants me there to hold his hand before and after. Thankfully I have this house full of family who will be able to help care for him post-op while I'm at work. (There are advantages to multi-generational living).

I helped CMM write an update to his daughters which he will send today.

Meanwhile I've been having a lower back muscle spasm for the last 3 days. This almost never happens to me - first time ever was while I was going through my divorce so I suspect stress is the culprit. (Go figure!) Thank goodness for Thermacare back pads. CMM has been really sweet about taking care of me during this - it's so nice because my ex-husband was terrible at taking care of you if you were sick.

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Sweetie, use some CBD oil on your back. xoxoxo


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Oh DUH!!!!! How come I never thought of that when I recommend it to others often? What an idiot. I'm actually cooking up some coconut oil with medical marijuana for CMM this weekend so I will try some of that. I'm sure it's stress-related, it is finally starting to ease. Usually doesn't last this long though.

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Originally Posted by kml
Oh DUH!!!!! How come I never thought of that when I recommend it to others often?


Because you're in pain, stressed, and focusing on helping everyone else?

This is why herbalists like to have a community so that when we're sick we can call a fellow herbal buddy who will remind us of what we already know!

Put some essential oils in a diffuser so you have some extra support. xoxoxo


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At the hospital waiting for CMM to get out of the OR. He's having a lymph node biopsy of his mediastinum to see if the cancer has spread there. If positive, it means the cancer is slightly more advanced but that he would qualify for an experimental trial where he might get one of the newer immunotherapy drugs. If negative, well, it's good news it hasn't spread that far.

He's nervous, I'm glad I could be here for him. I get the feeling he's a man who has been used to not depending on anyone but himself.

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That is so awesome that you are there for him and continue to be. He needs that. Positive thoughts and vibes heading his way!


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Lymph nodes have been biopsied, CMM had to go back down to interventional radiology this afternoon to get a chest tube because he developed a small tension pneumothorax. The surgeon says the tumor appears bigger than it was on the original films.

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Originally Posted by kml
CMM had to go back down to interventional radiology this afternoon to get a chest tube because he developed a small tension pneumothorax.


He tensioned that quickly from the biopsy? Wow, a simple pnemuo I can see but a tension pnemuo??? I hope his luck gets better. This is both sad, and a little scary, to keep hearing about. Everywhere I turn it seems I hear of a lung CA - and from non-smokers!!!!! That's the crazy part. Just found out the wife of a FF friend of mine was "lucky" enough to need a heart valve replacement and a routine chest x-ray revealed CA. Her's was contained and small enough that they removed the lower lobe of the lung but now she has the chemo and radiation to deal with. I guess it's part and parcel of getting older.

Please keep us all updated KML as I know many of us are following right along with you.


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Luckily even though it was a tension pneumonia they caught it early and he was never in any real distress. The bummer is just that it means an extra day or two in the hospital.

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Pneumothorax darn autocorrect

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Well darn, now CMM's whole left lung is opacified and won't re-expand, so he'll have another bronchoscopy in the morning to see what's going on in there. It might just be that because he can't cough stuff up (due to pain from the surgery) that he has a mucus plug in there. Or could be some complication of the surgery. Nobody really knows.He's uncomfortable and pretty miserable right now. What was to be a one night stay in the hospital is turning into a much longer ordeal.

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I am so sorry to read of CMM's current situation. I hope that they can figure out what is causing the left lung issue very quickly. Keeping all of you in my thoughts and prayers.


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I am sorry he is having so many complications. Maybe a good bronchoscopy/washout will help his lungs and he will be on his way to healing so he could begin treatment. Stay Strong!

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Thanks - that's what I'm hoping. He's so ready to get out of the hospital.

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Well CMM came home Friday, on oxygen. He had a rough weekend, he's struggling with severe pain from the surgery whenever he coughs versus the need to bring up these big balls of phlegm that are in his lungs. He didn't sleep well Saturday night and was pretty down Sunday.

Monday we met the oncologist who is clearly freaked that the tumor is progressing so rapidly and wants to schedule chemo asap. They think the entire left lung is now involved.

I have to be honest: although there is still some hope that he'll be a candidate for and responder to one of the newer immunotherapy drugs, his prognosis is dire. Odds are quite high he could die within 3-6 months.

And here's a dilemma I have: he is semi-estranged from his daughters, who blame him for the divorce and for not having "fixed" their alcoholic mother (who may, from his description of her, have some serious personality issues as well. ). Although I only have his side of the story, he seems to have been a very active caring father. I don't know if the girls are believing lies that their mother told or just still shocked at the disintegration of their family and venting to the "responsible" parent.

Anyway, in the past he has made multiple attempts to reach out to them and gets only intermittent response. I've pushed him to keep them apprised of his cancer diagnosis and only one has responded. They are all in their early 20's and I fear they don't actually realize how serious this is.

I know CMM would love to reconcile with them but seems to have given up. I think the rejection and disappointment has worn him down. But I worry about his daughters and the burden they will carry forward in their lives if he dies without them getting some kind of closure on the relationship.

(And yes, I'm sure you're wondering what kind of parent he was that his kids would abandon him like this. No, he didn't cheat on his wife. He didn't abuse his girls (he spanked one once and felt terrible and never did it again.) He took them to all their sports activities and maybe indulged them a bit too much materially, may have been a little bit strict but doesn't sound in a bad way.

He lived the last three years of his marriage with a wife who had moved out of the marital bedroom and was drinking heavily. I don't know how much was cause or effect as he made a decision to just stay until the last child was done with high school and then leave. This came about because he was unable to get his wife to curtail her spending despite a significant change in their finances. (And I suspect from other aspects of his story that she was an alcoholic many years before he realized it. )

Anyway - here's my dilemma. I've never met his girls but I'd like to do what I can to effect some kind of a reconciliation - and soon, as he may not have much time. I've worked on it by encouraging him to reach out but now am debating contacting them directly and saying something along the lines of "please don't tell your father I said this but things are very bad and you may want to come see him soon while you still can".

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I know that would be hugely overstepping some boundaries, plus the last person they may want to hear from is some woman dating their father. But I also don't really relish the idea of being the one to call as a complete stranger and say " hey, your dad died, where do you want me to send the ashes?"

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kml - This is difficult.

I was estranged from my own mother before she passed a bunch of years ago. At the time my wife pushed me hard to visit her in her last days and I refused. I didn't want a fake death-bed reconciliation. I loved and cared a lot about my mother but for reasons of her own that I never understood she shut her children out of her life for the last few years of it.

People don't live their lives the way that we think that they should. And even during times of crisis, when people should be reaching out to family etc, well, sometimes they don't too.

After my mother passed my family and I did attend the "celebration of life" and funeral and did our duty. But that was more for my brothers and sisters and to show an example to my children.

My own opinion is to let CMM do things the way that he wants to. A possibly painful time with his daughters is probably not what he wants at this time.


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I am going to concur with Andrew. I think right now CMM is fighting his own battle and may not have the physical or emotional strength for more rejection by them. Or perhaps he doesn't want them to think he needs them to care for him. I understand where you are coming from, wanting to make this happen for all of them, but I think this is going to have to be something CMM handles on his own.

I do hope he begins to feel more comfortable.

Again, you are an amazing woman to do all of this for him

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Truthfully I'm less concerned about him in this situation than I am with them. By all I can see he was a good father, not the kind of toxic parent that people are better off avoiding. I'm worried about the burden going forward for the girls if he dies without them getting some resolution. I suspect their mother has filled their heads with lies.

I'm also, selfishly, not wanting to end up being that stranger that they blame for his death - people do weird things when they grieve. What if they second-guess his medical decisions and decide I'm to blame?

I have thought about getting him to keep a journal, writing to the girls. At least that way if they don't reconcile I would have something to give them after his death.

But I don't think he will paint as dire a picture for them right now as the situation really is, and I wouldn't want them to miss out on seeing him just because they're young and still think their father is invincible.

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That's a tough situation to be in, for sure, kml. I applaud your altruistic thoughts where his children are concerned, but I think I am going to have to agree with Andrew and Ginger on this one and let HIM take the lead in how he wants to handle it. God bless you, lady....you are awesome!


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I think your concerns are well founded and no doubt come from your many years of experience in healthcare. What you fear happening could very well happen. I can't say whether what I'm about to suggest is right or wrong. I can just tell you what I would do - and I'd do what you are considering. However, here is how I would do it. I would first talk to CMM about this. I would not do it "behind his back" or without his knowledge. If he doesn't want to do it himself, he may still be okay with or even support you contacting them with his knowledge. If he is adamantly against it, I would then not go against his wishes.

If he is supportive or at least not against it, then I'd move forward, but here is how I would do it. I would use your position and background as a physician as part of what you do. Certainly you need to be clear that you are NOT HIS TREATING PHYSICIAN. Certainly don't try to falsify that piece. However, as you well know, people tend to listen differently and often respond differently when the person talking has "Dr." in their name. I can say the exact same things you might say, but you are going to be taken more seriously and with much greater weight than I would be as a Paramedic. It's just reality. I think they might be more apt to believe he may only have a few months left because you are a "Doctor".

I would tell them as frankly as you can that all you want to do is let them know what is going on. Tell them that you are very fearful that their father may die within the next couple of months. Tell them you are hoping and praying as well as doing anything you can to prevent that from happening but you know all too well that given what is going on he may not survive. Tell them you simply want them to know how serious this is in the event they would like to speak with or be with him. You then have to let them do what it is they are going to do.

Taking it a few steps further, should they decide not to contact him at this time, and should what you think may happen come to pass, I would reach out one final time when the end is very near and simply tell them, "I just wanted to let you know that it's very likely your dad will die within the next day or two" Again keep the frame of you just want them to be aware, lightly encourage, be open and welcoming but also accept whatever their decision is.

That's how I'd handle it.


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I agree w/Don's posting. If they aren't responding to their father's communications, then you may want to send them one last missive and advise them of the facts and what may happen down the road. If they don't want to communicate w/him, maybe they'll consider touching base w/you along the way. It's never easy to "share" info about someone's health and what very well could happen...but at least they will know that someone cares enough to tell them about their father's health.

Keeping all of you in my thoughts and prayers.


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Good advice, but I don't think he would agree to me contacting them - he's stubborn, doesn't want to feel like he's "begging" plus I don't really want to tell him what I'm thinking about the downside estimate of his prognosis right now - I think it's important to have hope (and I do - just tempered by knowledge of how badly it could go).

On another note - I just opened up my email and somehow the button had been toggled so that instead of showing most recent emails first it showed oldest emails first. That meant the first thing I saw were some old emails from my ex from 2006 that I had left on as proof that things weren't always as they were in the divorce. Loving mushy sweet emails just like you might expect from someone still in love with his wife after 24 years together.These emails date from just 1-2 years before the final bomb drop. They creep me out now but it's just proof of how they rewrite history when they go through their crisis.

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