how r things going

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candlelight
Regular Member


Date Joined Aug 2008
Total Posts : 54
   Posted 9/1/2008 8:14 PM (GMT -7)   
  Johnct
       Hi john how are you feeling i know you said you had a bad day Sat
Was it pain or something else I have been worried about you Did u decide about moving yet?
                               HUGS AND HOPE JOELENE

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/1/2008 8:44 PM (GMT -7)   

Hey, John!  I've also been concerned about you.  Check in, please!

Hugs,

Connie


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 9/1/2008 9:58 PM (GMT -7)   
Me 3. Hope your feeling better John. I am still kicking behind you.

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.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/1/2008 10:42 PM (GMT -7)   
John, My prayers are still with you.
Butterflythree
 
There is always hope!


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/2/2008 6:48 PM (GMT -7)   
John, Hoping that you are feelling okay. Any update?

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.


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 9/2/2008 9:04 PM (GMT -7)   
Hi all,

Thanks for your thoughts and concern.

Fever is kicking my behind. Peaked this am at 104 (norm is 97), back down to about 101. Between the encephalopathy and the fever, I can't get anything done. Tomorrow is PET Scan to see if the cancer has spread. I hope that I can resolve a course of action then. I see that I need to get someone on board who can think clearly and follow up on things for me. If that person were an attractive live-in masseuse, the world would be a better place.

Excuse my brevity but I feel awful. More tomorrow.

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


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 9/2/2008 9:31 PM (GMT -7)   

Hey John

You are soooo excused.  I'm hoping you can have anything you want these days.  Why not-I think you are entitled.  Please Be Well.  As selfish as it sounds we all need you desperately!  Why is it talking them so long to start you on a treatment.  John, can you rattle their cages or do you need me to send Pink Grandma to do it for you I'm sure she would be more then happy!!!

JoAnn


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/3/2008 2:04 AM (GMT -7)   
John

I am so sorry that on top of everything else you have such a high fever. I will send you positive vibes that they will be able to give you a course of action when you have your scan and hopefully they can take care of this fever thing that is going on too. I hope that you have someone to go with you today. If not Joann is right we will have to ship PG up there to take care of this and get all the docs straightened out.

Hope you got some quality rest.

Lucy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/3/2008 12:41 PM (GMT -7)   
John, it's good to hear from you, but not good to hear that you are still having fever problems.  I know this has been going on for awhile, though not such a high fever.  Obviously, there's infection somewhere...or so it would seem.  I hope you can at least get placed on antibiotics.  Meanwhile, can you take coated aspirin or acetaminaphen?
 
I am praying that your scan today reveals no further spread.  And may I suggest John Lennon for tonight's music?
 
Big hugs,
Connie

Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 9/3/2008 12:44 PM (GMT -7)   
Thought's and Prayer's John! We all miss you,


Judith

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/4/2008 5:56 PM (GMT -7)   
Okay John, we need an update on the PET scan if you are up to it. You don't want me knocking on your door do ya? Seriously you are in everyone's thoughts and prayers. Remember we are your friends through thick and thin. And you don't always have to be the one giving the support. Now it's our turn giving you the support.

Take care............
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 9/4/2008 8:50 PM (GMT -7)   

I second what PG said, John!  Our prayers are with you.

Big hugs,

Connie


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/5/2008 6:16 AM (GMT -7)   
Me too! Hope to hear from you soon.
Butterflythree
 
There is always hope!


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 9/5/2008 10:06 PM (GMT -7)   
Hi all,

I hope that everyone is doing as well as possible. It's been a couple of really busy days so I haven't made time to stay up to date.

No word on the PET Scan. I don't believe that they did the full scan that will show cancer migration. I think that they did the throat / neck scan only. The treatment will be chemo once each week and IM Radiation Therapy daily, for seven weeks. The PET that I am sure they did was an alignment, using 'the mask'. The mask allows my head to be bolted to the treatment table without actually drilling a hole in my head. The computer integrates the PET Scan with the CT Scan, creating a detailed 3-D image of the tumor in relation to all of the stuff I'd like to have saved.

I didn't feel that the PET Scan had taken me fully into the scanner so I queried the operator, who seemed to agree that only chest up had been done. I expect the oncologist to be surprised by the scan report and order another 'full-body' scan to determine whether the cancer has spread. I'm guessing that the call will come to me on Monday at 9:17 am.

Good news in the meantime (except in dealing with Blue Cross Insurance). Since the radiation shrinks the veins around the jaw, intrusive dentistry after the radiation will not heal, at least not well, so all intrusive dentistry needed for the rest of my life must be done before treatment. A dentist did the eval on Thursday and pulled four teeth today (that's why this is a Percocet (sp?)-laced post). Ouch!

While it seemed outrageous to pull two of them, it is the only way to guaranty that they wouldn't need intrusive attention later. I hope that you're skimming over this boring stuff -- but to me, it's my new hobby. Some people collect stamps, I am doing health care.

The last few days have been a whirlwind of miraculous accomplishments. In the normal world, nothing gets done this quickly. Friends called dentists, schedules were rearranged, the work was done without the blessing of Blue Cross (they came up with imaginary referrals and pre-approvals that were required (none of the doctors' insurance specialists had even heard of them)). Everyone involved put themselves out on the limb with me, ignoring the potential Blue Cross saw. It brings tears to my eyes. While the dentistry work is medically necessary, BC is working overtime to distance themselves from having to pay for my survival.

Next week the dentist will pull the sutures and I can start the cancer treatments as soon as the healing is done, maybe a week later. Seven weeks after that, I hope to be able to say that the cancer is controlled and become active on the transplant list again. Woo Hoo -- we'll see how it goes.

Thanks for your concern, your thoughts, your prayers, your support, for being here and for putting up with my rants. You give me strength to keep moving forward. And some days it takes a lot. Especially when I run into those staffers who don't care, won't try, want to get off the phone, or are tied by their employer to an 'attrition tree' that is set up to wear us down. They don't know us that well, do they?

I know I'm rambling. And it was polite of you to read this far. The four holes in my jaw and skull are starting to hurt and I think with a half-tablet, I can sleep. A little Eric Clapton, Jack Bruce, and Ginger Baker tonight: Cream -- Wheels of Fire.

Sleep well, and be well, John

ps - I had a TGIF happy-hour smoothie (mango, kiwi) with a woman who would be an ideal personal assistant for me, but she has a life and enjoys being paid. Oh well! j
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 9/5/2008 11:08 PM (GMT -7)   

Great post, John!  Good to see the humor is still intact.  As I used to say during the months of my cancer, when the prognosis was definitely NOT good, "I have to laugh to keep from crying."  My sister shares the same warped sense of humor I do, and told me I looked really good for a dying person.  smilewinkgrin  

From my own experience, I can tell you that the probable reason they scanned only from the chest up is that the most likely target for metastasis is to your lungs and brain.  If you feel uncomfortable with that, you could request an MRI with gadalinium.  I was told that this contrast medium will make any deposit of cancer in your body "light up like a Christmas tree."  I've had it 3 or 4 times, but normally I just get a CT with contrast of the abdomen at this point.  For awhile they would also do the chest and head.  As for BC, ask for your case manager.  You have one, whether you know it or not.  She is the person to persuade to pay for necessary medical expenses.  wink

So are you not going to seek other opinions? 

That's a drag having to have 4 teeth pulled, but better now than later, I suppose.

As a former medical transcriptionist, I find every word of your posts interesting...love all the details!

I hope the Percocet brings on a good sleep for you.  Unfortunately, I've found it tends to wire me. 

Hugs,

Connie


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/6/2008 3:55 AM (GMT -7)   
Hello John, hope you are still sleeping . I just wanted to thank you for the update. Sorry about having 4 of your teeth pulled............but it for the greater good. 4 less areas for pain in the future. You probably have had more than enough pain in your life.

Time to share some with Blue Cross....Be a royal pain in their lower posterior. I talked with my husband's case worker at least twice a week. I had her on speed dial. devil
Boy did she hate hearing from me. Oh well if you can't take the heat .........get out of the fire..... You gotta love any type of insurance company. They love to take your money but when it comes time for them to start dishing some out they want to put up all these road blocks and not pay. skull

As far as Percocet is concerned.......it made me see bugs crawling on the wall. BIG bugs! Now I don't take anything stronger than ibuprofen unless I am hospitalized. Then my drug of choice is Demerol. Then the only thing crawling on the walls is me. shocked

Hope your day goes well.........as always lot's of thoughts and prayers going your way.......
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 9/6/2008 4:14 AM (GMT -7)   
John

So glad to hear from you. I am sure things have been hectic, but so glad you have came through it with your since of wit in tack. I can not stand dealing with insurance companies either. PG is so right they love taking your money but try and get it back and you might as well be wrestling a bear. I think that there is some committee that is paid (with out money of course) to figure out loop holes that get them out of paying. I could get on a real soap box about the whole system but will spare everyone that misery.

Glad you got the dentist thing taken care of and that you are getting some much needed rest.

Please keep us posted and will keep sending positivie thoughts and prayers.

Lucy

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/6/2008 7:12 AM (GMT -7)   
Hi John, It is good to hear from you. I also enjoy reading your posts. I want you to know that you are still in my prayers.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/6/2008 10:32 AM (GMT -7)   
"As far as Percocet is concerned.......it made me see bugs crawling on the wall. BIG bugs!"

PG, that happened to me with Prednisone, except that the bugs were under my skin and biting me. And people were coming through the walls. That was in '75. Need I say I have never again taken Prednisone?

John, I hope you got a good night's sleep, or even maybe are still sleeping.

Hugs,
Connie

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/7/2008 7:37 PM (GMT -7)   
Hello John, Just been thinking about you and hope that you are doing okay. Check in if you are up to it.....

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 9/7/2008 8:09 PM (GMT -7)   

John, my thoughts and prayers are with you.  I'll be at Mayo tomorrow for tests, including abdominal CT to look for any evidence of cancer recurrence.  So you can throw a few prayers my way, too, if you are so inclined.

Hugs,

Connie


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 9/7/2008 8:11 PM (GMT -7)   

Connie

I will throw a whole bunch of prayers your way.  Please let us know how it went.

JoAnn


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 9/8/2008 9:57 PM (GMT -7)   
Hi all,

Hope you're all doing as well as possible. Thank you for your concern, thoughts and prayers. It means a lot.

Connie - please know that you are in my thoughts and prayers. From what feedback I hear, the Creator likes that you're a fighter and survivor -- high praise indeed!

No news on the PET Scan so I still don't know whether the cancer has spread. Somehow I missed my doctor's call today. Sleep comes when it wants. My mouth is healing well and the the pain is down to a dull throb -- Good Times!

I am beginning to believe that Anthem Blue Cross has put a 'contract' on me. While they generally like to reject most claims, I received one letter pre-authorizing the CT Scan to identify my tumor, and another letter, rejecting the CT Scan authorized in the first letter. It's a full-time job trying to survive their coverage. And the encephalopathy doesn't help me keep on top of it.

IMHO, they are the worst insurance company I've dealt with in all of my years of health coverage. They're turning me in to a paranoiac. Until now I thought I only had to worry about mob 'hit-persons' or CIA assassins, but my insurance company? Next, I'll have to get a remote starter for my car. Sorry, too many movies.

Be well, John
Cream again tonight -- their music has been especially effective at relaxing me for sleep.
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 9/8/2008 10:11 PM (GMT -7)   
Thanks a lot John.......I have Anthem Blue Cross. The only two HMO options that my employer offers us are Kaiser and Anthem Blue Cross. I guess I am up the creek........can I borrow your paddles?eyes

Hope you have a good nights sleep. Will be waiting for your next update kiddo........

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 9/9/2008 2:54 AM (GMT -7)   
John

I am going to have to disagree about the worlds worse insurance company since I believe that my carryer CARELINK has that distinction. I believe that there is someone that is paid to flip a coin whether or not they will pay for this procedure and apparently they just change the rules of the game just when you think you got it licked. I will agree that they all are horrid if you really need them and are ill, what does that say. Will stop here as I could really go on and on and on.

Keep us posted on your results. My thoughts and prayers continue to be with you.

Lucy
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