The continuing story...: Depending on... - Advanced Prostate...

Advanced Prostate Cancer

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The continuing story...

tom67inMA profile image
43 Replies

Depending on the final results of my liver biopsy, I may have to find another forum to post in. Right now I have "undifferentiated cancer", and they're conducting further tests to try to figure out where it may have originated. This could turn out to be my third primary cancer. At this point, I find the whole situation absurdly funny, as my self-pity fuse exploded a couple days ago and I'm no longer capable of taking any of this seriously.

tominmotion.blogspot.com/20...

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tom67inMA profile image
tom67inMA
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43 Replies
LearnAll profile image
LearnAll

Sad to hear this ordeal. You do not deserve this bloody s*hit...

They say trouble comes in THREE's and hopefully this is your last problem..because its the third one. Best of luck..my friend ! Lets try to make lemonade when life gives us lemons (three of them)

Cisco99 profile image
Cisco99 in reply toLearnAll

Actually we do not know tom67inMA all that well. He MAY deserve triple cancer metastasis. The facts are not all in.

But he would have to be a super-rat-bastard to match that category. And I like him, even though his files, as I say, are WOEFULLY incomplete.

:)

tom67inMA profile image
tom67inMA in reply toCisco99

Hahaha!!!!! Every time somebody says something about bad things happening to good people, I usually ask if acting like an @$$hole would help, because I can do that. :-)

Cisco99 profile image
Cisco99 in reply totom67inMA

Don't we know it! Buckle up sweetie.

Cisco99 profile image
Cisco99

I spent last week in hospital as drs tested me for brain mets -- dint find any. Keeps you hopping.

in reply toCisco99

Take care Cisco!🕊

j5000 profile image
j5000

Tom, I'm sad to read this update. But can't help but be inspired by your blog. You could teach a college course on "How to deal with the cards you are dealt." Doesn't seem fair to me that someone so obviously kind and funny has to go through this, but we all appreciate you sharing your story.

I truly hope and, more importantly, believe that this part of your blog post will prove to be the truest: "“You’ve seen what happened to those other two cancers that messed with me, haven’t you? I’ll give you a week to leave my body quietly before kicking your ass.” While that cancer is figuring out it doesn't stand a chance against you: keep feeling everything you are feeling--especially the Monty Python laughs.

Tall_Allen profile image
Tall_Allen

Let us know what the biopsy results are.

tom67inMA profile image
tom67inMA in reply toTall_Allen

I heard late today: some type of neuroenocrine cancer, even though my chromogranin-a came back normal. PET scan scheduled for Wednesday to try to locate source. Will be doing a bunch of genetic testing, because apparently it's rare for 52 year olds to get three cancers.

Tall_Allen profile image
Tall_Allen in reply totom67inMA

They couldn't tell from the IHC analysis of biopsy tissue what the source was? Did they stain for somatostatin? If positive, and the source was anywhere in the GI tract, Lutathera may be an option.

pcnrv.blogspot.com/2016/12/...

tom67inMA profile image
tom67inMA in reply toTall_Allen

Don't know. He was certain it wasn't either of my other cancers. I can ask more specific questions at the follow up next week. Right now it's difficult when I'm just getting quick updates on the phone, and I don't know the difference between somatostatin and deck stain :-)

Jbooml profile image
Jbooml

No kidding...it’s right out of a terry gilliam movie...guy gets his first cancer diagnosis..gets on top of it..and then two more pile on.....c’mon.

I’ve been told the germline Brca’s can pop up anywhere...and if its your case where multiple mutations occur within...one could conceivably expect something like yours....it sounds like this is where you may want to push your treatments.

Maybe that super T cell recently uncovered by the Cardiff researchers?

You’ll figure it out Tom...your smart

Luv ya man....I don’t say that often even in my emasculated condition.

tom67inMA profile image
tom67inMA in reply toJbooml

I also have a wicked smaht oncologist. He used to work in Boston at Dana Farber.

jader4 profile image
jader4

Like my husband, you just keep going. When news is bad, you look for the best solutions. You and your excellent physicians find treatments that give more time. You fight for health while living as much as you can. I wish you love and laughter and lightness through these dark days.

tom67inMA profile image
tom67inMA in reply tojader4

Thanks! My key observation in all this is that things can only get so dark. Once you reach pitch black, more bad news doesn't make much difference.

in reply totom67inMA

😩 Wtf?

MateoBeach profile image
MateoBeach in reply totom67inMA

Pitch black actually does not exist in the universe. Nor in human existence IMO.

There is always some light. Look for it.

Cheerr profile image
Cheerr

Tom your posts have always been inspiring and cheerful. I’m sad to know about this so far unknown tumor. I do hope it’s not a new cancer. Let us know soon, take care

Kaliber profile image
Kaliber

Hey brother ... hang in there , yea you’ve got a “ bunch “ of crappy mess there ... none of it “ appealing “ but you are in great strong physical condition, you can hang on and fight and beat this back as well. You got this . I can relate to your anguish totally , the expiration date on my carton was back in October - November 18 , dx’ed same time as you but way beyond any thoughts of radiation or surgeries ( wanted me to consider hospice ). and I’m still here slugging it out and clearly in nowhere near as great physical condition as you. I think that can make all the difference sometimes. I’m rooting for you big guy.

Hoping for the best Tom, you are already an experienced proven winner ... you’ll handle this too.

Peace brother ✌️✌️✌️👍

dougnola profile image
dougnola

Dear Tom. What a bummer...you’re one of my kindred spirits here because we were diagnosed at the same age and we are both fanatical about exercise as part of physical and spiritual regime. Keep up your great attitude...im pulling for you. DouginNOLA. ✌️

Danielgreer profile image
Danielgreer

Hi Tom, hoping for the best for you. Keep fighting!

timotur profile image
timotur

Take care Tom, hope for the best, keep running!

please stay posting here .. I read Tom in motion. Heavy duty disease brother. There is no joy in daily misery and pain. I’m so sorry that you’re suffering like this . Thanks for the fish slapping video . Monty python is the best . My fav is the gallows humor “ we’ve got to look at the brighter side of life” as they hang crucified side by . side ....on the gallow poles . if you do decide to start slapping people with fish get a videographer so that we can see it. Seriously , hold on to what or who you love in life ..... 😂🙏

dmt1121 profile image
dmt1121

I will stay away from offering any advise, medical "what-ifs", clinical trials, and anything medically relevant or irrelevant.

First, I can tell that you are a super-hero but please do get yourself a better name and a good costume designer! Marketing is all about that. You could make a fortune!

I would say that you should get the top prize for the most mind-bending diagnoses that would make anyone (well...almost anyone) curl up in a fetal position! I totally agree with your "humor for daily living" lifestyle choice.

I used it in my previously normal life and continue to use it when my situation is the most stressful and most scary. It keeps me on a positive mental path and keeps my family and friends from melting down. Getting others to laugh is what makes me happy and that can't be a bad thing.

For me, I didn't asked the "why me" question because I know it's random and based on a million variables, almost all of which we have no control over. My idea of dealing with advanced cancer is that once you're past the initial shock of being told, you enjoy each plateau for as long as possible, until the next plunge down a new drop on that roller coaster. There is a reason we call it the roller coaster of life and now we just understand it more intimately. You have been on quite the ride!

I wish you the highest highs that last forever and plunges of exhilaration and laughter, without fear. However, I am not able to do that because roller coasters scare the crap out of me!

All of us are with you and love to hear from you about what's going on. Have to go to start streaming my favorite comedy shows and cartoons to increase those endorphins!

tom67inMA profile image
tom67inMA in reply todmt1121

What, "Obstinate man" isn't a good super-hero name? :-) It was created by my friends on Facebook. We also agreed my costume includes some combination of work boots and pants hiked up to the armpits. One person even made lyrics to a theme song to the tune of "Particle Man" by "They Might be Giants". Such irreverence really helped me cope in the first go-round.

I've also stayed away from the "why me" questions. My mom has been badgering me to get religious, because "I'll go to hell if I don't believe in God". I told her point blank that I'm happier thinking my situation is due to random chance and bad luck, and not the specific choice of some loving, omnipotent being. But that's just me, I don't want to push my beliefs onto others for whom religion provides a source of comfort.

Thanks for the kind words. It does sound like we have a similar approach to coping with cancer.

Jbooml profile image
Jbooml in reply totom67inMA

Well Tom, after watching particle man on utube I think it’s fair to bring up a weirdly planckian coincidence I had watching a movie I’d flagged for viewing...the title ‘the man who killed don quixote’ intrigued me and I had a chance to absorb it late last night...I have to warn I turned it on 20m in...which in itself can add to intrigue...at times....by happenstance .

I watched this tortured time juxted mash up til nearly the end...enjoying it immensely for its lack of theatric convention vs incongruent spectacle vs childlike plot line divergence vs ad Infinitia where I finally had to check out who made this crazy ass tour de force...Terry F’in Gilliam.....so what kind of connection portends my astonishment....are we indeed Just dreaming our crazy worlds out loud.

I haven’t heard anything of Terry Gilliam until I thought to mention him yesterday.

Maybe you should watch. I loved it.

SeosamhM profile image
SeosamhM

Completely understood, Tom. My wife and others often comment on my ability to "cope" with humor. I respond that I'm not coping, I simply don't have the bandwidth, and what bandwidth I have is given over to the absurd nature of life.

I am truly sorry, but since you know the fish dance, I know you are emotionally fine.

But I do have a question for you: What is the average airspeed of a laden swallow?

dockam profile image
dockam in reply toSeosamhM

youtube.com/watch?v=uio1J2P...

SeosamhM profile image
SeosamhM in reply todockam

"Unladen"...sheesh - how could I forget??? I would surely be swept into the chasm! Thanks, Doc.

dockam profile image
dockam in reply toSeosamhM

This is for us battling PCa " I'm not dead, I don't wanna get into the cart" youtube.com/watch?v=W4rR-Os...

tom67inMA profile image
tom67inMA in reply todockam

Pretty sure I've used the "I don't wanna get on the cart" line several times already. I can see I'm in with the right crowd here!

tom67inMA profile image
tom67inMA in reply toSeosamhM

What do you mean? A blue or a yellow swallow? :-)

SeosamhM profile image
SeosamhM

youtube.com/watch?v=ZmInkxb...

You ARE the Black Knight! .... well, upon reflection, it seems like most of us here are! ...So

We ARE the Black Knight!

dockam profile image
dockam in reply toSeosamhM

Yes, Brother we are all Black Knights - despite the trials and tribulations. youtube.com/watch?v=SJUhlRo...

tom67inMA profile image
tom67inMA in reply todockam

This is one of the most inspiring songs I know of, about keeping spirits up and having a laugh no matter the circumstances. I have imagined it being played at my funeral, except that it wouldn't be the eclectic choice I was hoping for, as it's the most popular funeral song in Britain. Not sure about the US, but we can't be that far behind. rollingstone.com/tv/tv-news...

dockam profile image
dockam in reply totom67inMA

Lol that's awesome about that song at funeral.

My tentative songs:

"In my life" - Beatles

"Remember me as a good thing" - Diana Ross

"Funeral for a Friend" - Elton John

"And when I die" - Blood, Sweat and Tears

"What a wonderful World" Louis Armstrong,

and then :

youtube.com/watch?v=V1bFr2S...

Happy Chinese New Year y'all

Fight on

SeosamhM profile image
SeosamhM in reply todockam

The way IZ sings it almost always brings me close to tears. Thanks for sharing. Year of the Rat....wealth.

tom67inMA profile image
tom67inMA in reply toSeosamhM

One more clip the perfectly describes the attitude required to live with cancer.

<iframe width="560" height="315" src="youtube.com/embed/K6Bw4zyW1ig" frameborder="0" allow="accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture" allowfullscreen></iframe>

To paraphrase: "It's a slow, horrible death!" ... "Eh, could be worse"

SeosamhM profile image
SeosamhM in reply totom67inMA

Indeed. “Life isn't fair, it's just fairer than death, that's all.” - The Princess Bride

SeosamhM profile image
SeosamhM

I have the perfect Valentine's gift for you, tom67.... John Cleese is on tour and will be in the Boston area on February 15! Of course, you'll have to pay for tickets. And get there. So it's more of a "suggestion" than a "gift"..... :)

tom67inMA profile image
tom67inMA in reply toSeosamhM

That was a very silly way to convey the news. :-) May have to look into it if I'm healthy enough.

SeosamhM profile image
SeosamhM in reply totom67inMA

I earnestly hope you are. And yes, silly is the way... the ministry of silly walks, the fish dance, all of it. I like the absurdity of the flow of thought...so I wrote it exactly how I thought it. Since coming on this forum, I view you as one of those co-workers (many here) that make work bearable in your own unique way. Good luck, brother.

tom67inMA profile image
tom67inMA in reply toSeosamhM

My co-workers have told me repeatedly they're going to revoke my pun license :-) Best of luck to you too, and all of us here.

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