The oncologist gave me some choices, all bad

[AlienGirl]

So, this cancer is an extremely aggressive second primary tumor that has already crossed the midline of the tongue. If I want to live more than about nine more months, I will need to have at least 60% of my tongue removed, a bunch of lymph nodes out, and probably at least part of my jaw removed. They can reconstruct part of the tongue with a chest-flap muscle, but speech is likely to be extremely impaired and of course I won't be able to taste anything anymore. (This probably ends my political career.) I'll need a trach to breathe through and a PEG tube to eat through.

I forgot to ask what my odds/projected lifespan is if I get the surgery done.

If I opt not to go through the surgery, I will live about six to nine months, and the worst part is during the last stage I will smell so bad that no one will be able to stand being around me and the pain will eventually be uncontrollable. This is a fate that will eventually happen to me anyway, since even with the surgery the odds of eventual recurrence of this kind of aggressive oral cancer are very high.

I brought UncleSepp's mom, who is a trained oncology patient care tech/CNA, with me to the appointment, and she said it is one of the worst gut-punch diagnoses she's ever heard. I've been staying with her and Sepp is coming down from Seattle to stay here with me through this, too. I am so amazingly lucky and grateful to have friends like this.

Still undecided about my course of action.

Tucker

[Grantuspeace]

1. wow...... you are so strong!

I think I'd be a bubbling sack of self-pity induced tears. Prayer, vibes and best of luck to you!

[Starry Messenger]

2. ((((hugs))))

[KT2000]

3. Sending good thoughts

It certainly does sound like a real gut-punch.
I'm so sorry you have to go through this.

[Behind the Aegis]

4. I wish you all the best.

I am so sorry to hear this. :hug:

[LeftishBrit]

5. I am terribly sorry to hear that.

:hug:

wishing you all the best.

[blueknight]

6. wish you the best

you must be a very strong person.

[XemaSab]

7. That really blows

I hope you can find peace with whatever you decide to do. :pals:

[undeterred]

8. All the best to you with your decision

:grouphug:

[DemocratSinceBirth]

9. I Will Pray For You

Love and prayers
DSB

[DemocratSinceBirth]

10. I Will Pray For You

Love and prayers
DSB

[Phentex]

11. I'm sorry to hear this...

I wish you had better options. Please keep us posted on what you decide to do.

:hug:

[Bertha Venation]

12. Tucker

Since I haven't been around much, this is the first I've heard. There's nothing I can say. I'm sorry.

I hope you can stay on DU and keep us updated.

:hug:

[ceile]

13. You sound like you're keeping it together.

I don't know what to say...:hug:

[redwitch]

14. Oh Tucker what awful news!

:hug: I hate cancer, hate it, hate it, hate it!

[Pool Hall Ace]

56. Yes, this.

And to Tucker -- cyberhugs for you. You have some amazing friends!! :hug:

[femmocrat]

15. So sorry, AlienGirl.

I am keeping you in my prayers. :hug:

This might be a total shot in the dark, but I've seen ads on TV for the Cancer Center of America. Have you looked into them? There is one in Seattle. Link:

http://www.cancercenter.com/seattle-clinic.cfm

I wish I had more to offer. O8)

[Flaxbee]

16. Crap, Tucker.

Crap crap crap. From your last post it sounded like you were all too aware this was a possibility; it still sucks to hear it.

I hate to think of losing you so soon.

I'm sure you hate to think of leaving so soon.

If you choose not to have the surgery, how many good months do you have? Are you in any pain or discomfort now (aside from mental anguish)?

[quakerboy]

17. Ive been in the room with a whole lotta people

And I would agree that is right at the hardest line most negative diagnosis Ive heard of. I am sorry. I hope that you find peace in whatever decision you make.

[Arugula Latte]

18. I'm so very, very sorry.

:grouphug:

[hedgehog]

19. I have no words, only my sorrow that you are faced with this.

[vard28]

20. I'm sad to hear your news

I don't know you, but I have a dear friend that is battling her second round with cancer and this time it has spread to several different places in her body. On top of that we have two family friends that were diagnosed just this week. I HATE cancer. I'm sorry you have to deal with such an aggressive kind. I'm sure I have nothing to say to make you feel better or to help make your decision any easier. Just know that I will be one more person who is thinking about you.

[grasswire]

21. you probably need that other number to make the decision

the prognosis with the surgery number.

Thank you for your courage in sharing this with us. Someone who reads this is likely to face similar circumstances and remember your calm strength.

[FloridaJudy]

22. I'm so, so sorry.

Words are inadequate. Please know that whatever you decide to do, you have a lot of people rooting for you.

And do get a second opinion. It's hard to believe that with all the options available these days that the pain will be uncontrollable. Most hospices will be willing to give whatever massive doses of painkiller it takes to make you comfortable, even if it hastens the end. I've had go-rounds with oncologists about this very issue: their focus is on keeping you alive as long as possible, not on keeping you comfortable!

[rurallib]

23. our best hopes and wishes for a good outcome

it takes courage. remember DU is pulling for you.

[bluesbassman]

24. Sorry you're having to face this Tucker.

Best wishes for what ever decision you make. :hug:

[JohnnyLib2]

25. Aw, jeez. "gut-punch" is right.

All kinds of good thoughts and prayers from this household. :hug:

[girl_interrupted]

26. I don't know if this would help

or if it would be beneficial for your type of cancer,but maybe you could inquire about it, with your Oncologist and your friend. It's called: REOLYSIN http://www.oncolyticsbiotech.com/tech.html and http://en.wikipedia.org/wiki/Reolysin. There is a lot more info if you put it in Google.

It can't hurt to ask and I'm sure you have gotten a 2nd opinion on your diagnosis.

Wishing you the best and praying for you too!

[struggle4progress]

27. ouch

:cry:

:grouphug:

[Lars39]

28. I'm so sorry, Tucker.

:hug: One never knows what scenario is going to have to be faced when cancer recurs. I've tried to think of different scenarios for myself if mine recurs(breast cancer,3B), but damn, yours has my imagination beat.:( :hug: I'm thinking hard about door #3 for myself.

[murielm99]

29. I am so sorry.

[snagglepuss]

30. I am so sorry. I wish you strength, peace and comfort. You are in my thoughts

and prayers. :hug:

[La Lioness Priyanka]

31. i hope that there is a miracle for you, and barring that the least pain and discomfort possible

and a lot of love

[La Lioness Priyanka]

32. i hope that there is a miracle for you, and barring that the least pain and discomfort possible

and a lot of love

[woo me with science]

33. Tucker,

There are no words. I am sending strength and all my heart's best wishes to you and everyone who loves you.

[applegrove]

34. So sorry. Why not google Roger Ebert to see how he has coped?

He lost his jaw.

[AlienGirl]

38. He was already rich, and he is male

I am not rich enough to afford the kind of post-surgical care he had, and in this society a man with a facial deformity can do much better than can a woman with the same issue.

Tucker

[applegrove]

39. You are correct. vibes to you.

[OhioBlue]

80. hugs and vibes to you AlienGirl!!

[Dappleganger]

35. Prayers and positive vibes for you.

I am at a loss of what to say. :(

:hug:

[FloridaJudy]

36. Please, please, please get in touch with hospice!

You don't need a referral - all you need is a prognosis of a year or less. They can help you weigh the options, and if you decide against the surgery they'll find ways of keeping you comfortable and make the time remaining more meaningful.

Oncologists are determined to keep one alive at any cost. It's not their fault: it's the training. They view cancer as the enemy and will keep fighting it, even if the attempt is futile and causes misery for the patient. I've had many screaming matches with them about my own family members, one of which ended with "I don't give a fuck if she gets hooked on painkillers! She's 85 years old, weighs 75 pounds and has inoperable cancer! Now give her some goddam morphine!" He didn't. I called hospice. They had her on a drip and patches two minutes after I opened the door.

They're angels, IMHO.

[renate]

64. ditto that, times a zillion

If you're at all reluctant to call in hospice, because you think you have to be at death's door or because you think it's equivalent to giving up and waiting to die, people often get "kicked out" of hospice for living too long, so 1) don't wait, and 2) don't think of it as starting the inexorable countdown clock.

They will provide tremendous emotional as well as medical support and they will be an excellent source of information and compassion.

And they can give you the hugs I wish I could give you. :hug:

[riderinthestorm]

66. Another very, very extremely forceful kick for this post. Please get in touch with hospice

You need people who have a "big picture" view at this point to discuss ALL your options. This isn't "giving up". From my experience, hospice workers just listen and help you make the decisions that are best for you.

They are angels.

[mtnester]

84. THIS + a zillion - so very true

they will not press you to do anything, and you can get informaation on counseling and exactly how they address quality of life issues, etc. Hospice is also a godsend to your family - they can provide couseling and the loving support they will also need.

[Nuclear Unicorn]

37. Fight!

Fight and you will be here to love and be loved.

Please, keep fighting.

[GreenPartyVoter]

40. I'm so sorry, Tucker. *hugs*

[kimi]

41. Oh my word

First off, a big :hug:

Second, a whole lot of these :grouphug:

I don't know what to say, third. You're the only one who can make that decision, but you know this. Your strength and willingness to share this with us just leaves me speechless. Bless your heart, and every single vibe I've got is going to you.

[rrneck]

42. I am sorry.

For what it's worth, I admire your courage.

[txwhitedove]

43. Life throws us crappy choices. Just keep fighting to live your life the best way you can.

Peace will come to you.



:hug:

[Odin2005]

44. Damn, that sucks giant boulders.

:hug:

[u4ic]

45. Reading your post is heartbreaking, Tucker

I really do hope for a miracle for you. :hug:

[WinkyDink]

46. I admire your amazing bravery, AlienGirl Tucker.

[AlienGirl]

50. Your icon speaks volumes...I hope to emulate his example

[alphafemale]

47. I'm so sorry, Tucker.

I am glad you have dear friends nearby to help you through whatever you decide, though.

[The Velveteen Ocelot]

48. I'm so very sorry. I wish I had words to offer, but

:hug: is all I've got.

[msanthrope]

49. I wish you peace and calm as you make your decisions,

I am so sorry.

[Digit]

51. I don't know where you live, but have you checked out Duke for their clinical trials?

I noticed they had adult head and neck oncology, etc trials for adults.
I don't know what is involved, but there is a whole list.
http://www.cancer.duke.edu/modules/don66/index.php?id=1

You might want to also take a digital recorder the next time you visit the doctor.
I know for my own situation it is difficult to remember all the things the doctor is saying
because my mind is thinking of what else to ask, etc. Plus my memory is shot to hell anyway.

I will be praying for you in the meantime.

[lightningandsnow]

52. I'm so sorry.

:hug:

[likesmountains 52]

53. I am so sorry...no other words.

[Solly Mack]

54. Sending you hugs.

For what it's worth, you made an impression on me, long before now...a thread and a PM that has stayed with me years later...in my thoughts. A good impression, of course.

I wish for you the best possible outcome.

[Gormy Cuss]

55. My best to you as you wend your way to a decision on which way to proceed.

The choices right now are tough. I'm sorry that I can't offer more than a cyber hug.
:hug:

[WCGreen]

57. Tucker, I kind of know what you are going through...

I say kind of because the decisions you are going to have to make are between bad and worse.

The stuff I am dealing with is slow progressing but could turn on a dime and I would be gone.

More than a few times these last ten years or so they didn't think I was going to make it.

Yet here I am.

I don't know what to say but have peace as long as you can and once you make your decision, don't revisit it. Spend your time with as few regrets as possible...

You are with me in spirit.

Christopher

[WinkyDink]

62. {{WCGreen}}

[fortyfeetunder]

58. I am truly sorry, Tucker.

I read this at work today and said a silent prayer for you. This sounds like the toughest fight for you. I wish you the strength to weather through this storm and find peace.
:hug:

[LeftishBrit]

59. Just also to say...

whatever decision you make, do talk to a palliative care specialist about how you can prevent or treat distressing symptoms if they occur. I hope you live for many years and this never becomes relevant; nevertheless you should not be living in fear of uncontrollable pain. Pain should not and need not be uncontrollable; there are almost always ways to control it.

All my best wishes to you.

[mnhtnbb]

60. I am so sorry to hear this, AlienGirl.

Only you can decide how much you want of more time and at what cost--and I'm talking emotional, physical, mental--not just financial cost.

I wish you light and love and peace with your decision.

[KamaAina]

61. And to think, not two years ago I was practically salivating

at the thought of your possibly couch surfing with me.

:cry:

[AlienGirl]

63. ...and, given the state of the world how much of the future do I want to live through anyway?

Maybe getting out now is not such a bad choice. There sure seems no end in sight to the New Depression, oil's end, climate disaster, or my own economic fuckedness.

Tucker

[Lydia Leftcoast]

65. I'm so terribly sorry to hear this, Tucker

But you've been given some very good advice and options to think about.

[riderinthestorm]

67. Oh Tucker. I posted upthread but here's a hug independent of my words.

I hope you can find some peace and quiet to make the decisions you need to make right now. So very hard. :hug:

[muffin1]

68. I am so sorry, AlienGirl.

:hug:

[abq e streeter]

69. Tucker...once again, I just don't know what to say.

I wish I had something deep or profound or comforting....something...But I don't. Just another person out here that cares, and for what it's worth, will keep you in my prayers.

[Xipe Totec]

70. All I can offer is my mother's favorite poem; Pui Avanti - Never Surrender

Do not surrender even when defeated,
and do not be a slave even in bondage,
trembling with fear advance bravely,
and attack with fury, though badly wounded.

Be as stubborn as a rusting nail,
that refuses to yield though old and ruined,
and do not envy the peacock's plumage,
that drops in fear at the first noise.

Be as a god that never cries,
or as a devil that never prays,
or as the oak whose mighty canopy,
needs of water but does not beg it.

Even when it rolls to the dust,
let your head scowl and bite,
and scream for vengeance.

- Pedro Palacios Almafuerte
Argentinian poet 1854-1917

[Historic NY]

71. Please just don't give up.......fight fight fight

find out other opinions do something....I'm down 3 going on 4 friends in the past yr....:hug:

[deutsey]

72. I'm terribly sorry to hear this

:hug:

[snacker]

73. I'm so sorry to hear this.

I'm sending hugs your way. Please know that many of us here at DU are holding you in our thoughts and prayers as you fight forward. Take strength and love from each of us.

[mentalsolstice]

74. {{{Hugs}}}

You, and only you, can determine what the best course is for you. It sounds as though you're surrounded by good friends, my thoughts are with you and them as you make your journey through this.

[bif]

75. My thoughts are with you

Take care of yourself. Keep positive vibes in your life.

[Mike 03]

76. Thinking of you

AlienGirl, you are one of my favorite DUers and my heart broke to read your post.

I just lost my father to cancer (myeloma), and pain management was an important issue. I hope you have a health advocate person to help you deal with all the information you must be getting right now. It is overwhelming.

Please keep us updated, and especially let us know if you need anything or how we can help.

HUGS

[Mike 03]

77. kick nx

[RadiationTherapy]

78. My brother survived throat/head radiation and he is pretty roughed up

11 years later. However, he is still in love with life. I will start a thread about it soon. Perhaps it will help you think through this.

[pacalo]

79. Oh, Tucker.......

:hug: :hug: :hug:

I'm praying for you.

[fizzgig]

81. words seem so inadequate

all my love to you :hug:

[susanr516]

82. I'm so sorry, Tucker

Words fail me. :grouphug:

You're in my thoughts.

[Tuesday Afternoon]

83. could you get another opinion? can you contact Cancer Centers?

wishing you energy, strength and peaceful vibes.

[mtnester]

85. I am deeply, excruciatingly sorry.

[MerryBlooms]

86. Oh no, I'm so terribly sorry. n/t

[GoCubsGo]

87. Oh, my! I'm so sorry.

Wish there was a way I could help.