Off to tumor surgery

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JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 8/19/2008 9:31 AM (GMT -7)   
Hi all,

Hope that all is well with everyone -- as well as can be expected.

I did the pre-op physical yesterday and in about an hour I will head to the hospital to see what's up with this tumor. Yes June, we were both wrong -- it wasn't a tuber at all -- not a potato or a peanut. But I like the idea of the peanut better. A growing tuber sounds so much more acceptable than a growing tumor.

I don't know what the impact of having the neck tumor will be, but it seems that if it is treatable, it shouldn't delay my liver transplant too much. The EN&T doctor thinks that it appears malignant but treatable. If not successfully treated, then I suppose all transplant bets are off. I don't think that they will transplant to active cancer (non-liver) patients, regardless of possible life expectancy. Too few livers; too many needed.

Wish me well. I'm taking Led Zeppelin on the MP3 for this extravaganza.
If they use the good drugs, it should be quite relaxing. And I could use a good sleep.

Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


candlelight
Regular Member


Date Joined Aug 2008
Total Posts : 54
   Posted 8/19/2008 11:30 AM (GMT -7)   

johnt

i know all will be well pleeeease let me know what happens today.led zepplin is a good choice!!!!! joelene


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 8/19/2008 1:39 PM (GMT -7)   

John, my thoughts and prayers are with you yeah .  Hang in there and let us know how everything goes.

 

Judith


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/19/2008 5:23 PM (GMT -7)   

Ditto what Judith said.  We'll be anxious to hear from you.

Peace and prayers,

Connie


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/19/2008 10:49 PM (GMT -7)   
John just wanted you to know that we are all in your corner........with so many thoughts and prayers this surgery has got to be successful.
Hope you get plenty of good sleep. Keep us posted.

Thoughts and prayers........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 8/20/2008 5:52 AM (GMT -7)   
John

I ditto everyone else's thoughts and prayers. Hope that you get some good snoozing. Please keep us posted.

Lucy

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 8/21/2008 1:50 AM (GMT -7)   
John

Still hear reading what I read. Enjoy the music and the snoozzzz, I could sure use some. I guess from now on it's late nights (early Mornings) for me. Take Care.
june

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 8/21/2008 1:53 AM (GMT -7)   
PinkGrandma:

Thanks for the boost on the other channel. I'll have to pay more attention to dates and times. Or take more Zink.

june

La Bunna
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 8/21/2008 4:26 PM (GMT -7)   
john
What is going on?

I worry.
La Bunna

"Courage is the art of being the only one who knows you are scared to death"


candlelight
Regular Member


Date Joined Aug 2008
Total Posts : 54
   Posted 8/21/2008 5:42 PM (GMT -7)   
John
ditto on LaBunna's post am starting to worry also
Joelene

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 8/21/2008 7:46 PM (GMT -7)   

OK John

Its been long enough.  We all need a good laugh and you are the BEST at it. 

JoAnn

 


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 8/21/2008 10:19 PM (GMT -7)   
Hi all,

I hope that all is well with everyone. Here, it is a week of the most beautiful weather imaginable. I wish I had my sailboat in the water. Then I could be listening to Jimmy Buffet with spray coming over the bow onto my face.

It's been an exciting day here in paradise. My appointment regarding the biopsy was at 1pm. The results came back as expected (not as hoped) and the verdict is that I have a treatable 2x5" throat / lymph node tumor of Squamous cell carcinoma. Although I will not meet with the oncology team until next week, initial thought is that it is not operable so it probably will be radiation / chemo therapy. My low platelet count and the tumor configuration are serious complications, as is the fact that Squamous often comes back.

Needless to say, I had to call my transplant team since I will be ineligible for a transplant until the cancer is neutralized. My MELD is low so it shouldn't set me back too far. The phone rang every 15 minutes all afternoon. Even my last ex-wife, who owns a health-related company, heard the news and called. Not a good sign for a positive outcome. (She's really quite sweet and wouldn't wish me ill, so her concern could be considered an ill omen)

It took the IRS getting out of line to trigger me into learning enough law to sue them as my own attorney and win (I made them settle on April 15th for the press coverage), so I guess this should trigger me into learning enough medicine to navigate the medical system. My friends say that those two stories are books that I should write. Anyway, I thought I already knew too much about health care with this Hep A, B, C and ESLD thing. Oh well, there's always something.

This new research just gives me a new hobby, made even more challenging with the encephalopathy. I could learn the same thing over, and over, and over. Hmmm, I may want to think about keeping better notes. Or find a really cute secretary who will work for peanuts, or room and board.

So you ask, how am I? Except for short bursts of internalized anger, I am pretty fatalistic about it. Not in the sense that life is scripted for us by the maker, because I believe that free will is the gift given to us that puts us apart from the angels, but fatalistic in accepting that I am, and have been, and hopefully will still be, blessed beyond belief. I think that I will overcome this -- but if I don't, I can't complain about my life, my loves, and my experiences. Enough of this touchy-feely rumination -- I should be making football metaphors -- this is the season, and football is my sport.

But now I'm off for a stiff double-shot of lactulose. I may swig it directly from the bottle. Maybe there's a little wild left in me after all. Down and dirty Rolling Stones tonight; and not at the usual low volume that puts me to sleep! Just loud enough to rattle the nightstands.

Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/21/2008 10:36 PM (GMT -7)   
Hello John, I am sorry it wasn't the outcome that everyone wanted for you. I have a few not so pretty words that I felt like saying when I read your post, you can probably guess what they are. devil mad

But if anyone can over come this.... you can! Shoot, if you can beat the IRS you can beat anything.

Don't even think about ill omens. Think about everyone's good vibes.....because they are all directed at you.

And that Rolling Stones sounds like and excellent choice for you tonight. But I think I feel like Edgar Winters.

As always...........Lot's of thoughts and prayers........ smurf
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 8/22/2008 2:56 AM (GMT -7)   
John

I am so sorry that your biopsy report was not the news you were expecting. I can understand your feelings of anger and grief over this news, you have had so little time to really digest all this information. However I know you are a fighter and this is just one more battle. The war is long from over for you or any of us. If Mick Jagger can still get on stage and shake his bootie then so can the rest of us.
Since you have mentioned "the season" I must confess that I too am a "football freak". I am looking forward to many "spirited" and "philosphical" conversations regarding our respective teams.

Hope you shook the rafters tonight. My continued thoughts are with you.

Lucy

Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 8/22/2008 10:58 AM (GMT -7)   

Ditto from me John as I can't say the words I feel like saying nono .  You sound like a real fighter so hang in there and this too shall pass!

 

Judith


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/22/2008 11:19 AM (GMT -7)   

John, this is not the news we wanted to hear, but you can overcome it, my friend, of that I'm sure!  Hey, remember me?  Liver cancer one-foot-in-the-grave?  But here I am, cancer free!  Now, I will tell you that if you have radiation it will burn the hell out of your throat.  So while you're still able to eat, go to it.  Enjoy some pie a la mode, hot fudge sundaes, and whatever else you desire.  Because weight loss is guaranteed.

Big hugs,

Connie


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 8/22/2008 7:23 PM (GMT -7)   

Ok John

You have to me mad as hell right now!  So to help you get through that part I have a good saw you could use to cut down as many trees as you like until the anger has subsided!  Then you can move on to more productive things like finding that secretary to help take notes.  I have no doubt you are going to give this next bump in the road one hell of a fight!  You will get tired and probably feel like crap.  Just ask Connie but you will do what it takes.  Its just the way you are made.  Let me know when you want the saw I will be happy to deliver.  I'll even bring Jerry along to assist. 

BE WELL

JoAnn


candlelight
Regular Member


Date Joined Aug 2008
Total Posts : 54
   Posted 8/22/2008 11:16 PM (GMT -7)   
John
just read your post cant believe it, but you know better than anyone thats what this disease like to do.It throws as many punches as it can at you.You have to be stronger and keep fighting back! So get yourself that cute little secretary,turn the music up,get a friend to help you take the boat out and fight.As a matter of fact I think you should write a book about it all. You can use your posts they are heartwarming and funny,and would help others get thru this Take care and hugs Joelene

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 8/23/2008 3:10 AM (GMT -7)   
John

Just reading all the posts leaves me speachless. I can tell your a fighter, you will be O.K. I've been told we all have at least three angles with us at all times. I'll see if one of mine can go ruffle a few of your angles feathers. Take care.

june

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 8/23/2008 7:57 PM (GMT -7)   
John, Just want you to know that my prayers are with you. I am sure you are going to overcome this.
Butterflythree
 
There is always hope!


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 8/23/2008 11:52 PM (GMT -7)   
Hi all,

Thanks for your kind posts, encouragement, positive thoughts and prayers. I am thankful to have you all for my virtual family. It means a lot to me. I would like to personalize this response to each of your comments but am short on drive right now. Please forgive this more generic reply. I trust that you know how much love I hold in my heart for each of you.

I have to admit that having an aggressive cancer had taken the wind out of my sails, but I'm done with that now. Time to move on.

Knowing that I must start therapy right away (the tumor grows noticeably), I have had friends and family jump in to offer living with me or having me move close to them so that they can manage and help during the radiation / chemo treatment period. I love New England but a warm winter in CA or AZ sounds wonderful. Your concern and the forceful intervention by friends and family makes me feel loved and blessed. Also, sailing friends have invited me to join them for some of their weekly races -- cool!

Anyway, this is a Hep forum so I will try to minimize my comments on this non-liver cancer, but promise to keep you current on my status. The only tie to my liver condition is that this tumor becomes common with compromised immune systems (and who can compromise better than I?) As soon as my oncology team has a treatment plan, I will meet with the transplant team to evaluate the impact to my ESLD program.

My greatest fear is that the high recurrence rate of this cancer (up to 50%) will derail my transplant. But since I cannot control that, I will not dwell on it.

My best wishes for each of you, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/24/2008 5:59 AM (GMT -7)   
Hello John, I am so glad that you have so many friends and family offering to help you through this. As far has the wind in your sails......your virtual family will be more than happy to keep blowing your sails. Shoot... our Florida cyber family can send you some of tropical storm Faye to fill your sails.

Don't worry about being off topic with your battle......you still have ESLD and as such you are a card carrying member of our forum.

I am partial to California winters also.......but then again living here all my life .....makes me partial. So if you do end up wintering here let me know.

Lot's of thoughts and prayers............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/24/2008 9:09 PM (GMT -7)   

John, if you go to AZ, you could be treated at Mayo and they could also keep a check on your liver.  I doubt that a cancer recurrence (if there should be one) would be that fast.  Hopefully, you will be able to have your transplant with no cancer interference.  And remember, recurrence is only a possibility...not a given.

How about some Bonnie Raitt or John Lennon tonight?  (Just looked at the time and realized you are probably already in dreamland.)

Hugs and very best wishes,

Connie


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 8/24/2008 10:08 PM (GMT -7)   
Hi PG and Connie,

Thanks for the positive thoughts and advice. The tumor seems really aggressive so I'm trying to move my consult up a day or two.

PG - I really miss CA and the weather. My early adult life was there; my daughter was born there and went to Cal State, Chico. After Hollywood, I had a beach place in Ventura and a redwoods cabin in Sonoma -- spoiled, huh? I didn't even mind being in the center of the '71 quake, the Northridge fires, or watching the Valley's year-plus natural gas fire plume. No tsunamis, though. I hope your closing is soon - best on the new house.

Connie - My parents live only a few miles from AZ Mayo so it is in consideration. I wish I were in dreamland but it's only 1am here. I think that you're right -- Bonnie it is.

Time for a Vicodin. The pressure of this tumor is putting serious pressure on my ear and jaw. Half the time, the drug puts me to sleep, the other half, it wires me up. I'll know soon.

Thanks for being here.

Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/25/2008 1:11 AM (GMT -7)   

John, is the tumor on the side of your neck?  Earlier when I mentioned the radiation burning, I was thinking it was your throat.

I was on the phone with my best friend (NYC) for over 3 hours, and that wired me up.  I need to try to get some sleep, since it's now after 4 A.M.

Take care, my friend.

Hugs,

Connie

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