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Posted 5/1/2011 10:04 PM (GMT 0)
Mandy, my oldest g'daughter has your name.  Her mom was a Manilow fan.

 

Thanks for the support.

 

Hugs,

Connie

Posted 5/6/2011 6:42 PM (GMT 0)

UPDATE:  I've been waiting around for a week to receive an appt. for chemoembolization.  Not a long time, except with the new, cancerous liver tumor, I feel like every day it's growing a little more.

So I just put in a call to my Interventional Radiologist's nurse.  She hadn't heard that the cancer had returned, but is going to find out what the holdup is for the chemoembolization and give me a call back.

Hugs,

Connie

Posted 5/6/2011 6:52 PM (GMT 0)
Hi Connie,

I know how hard it is to wait - sending calming thoughts your way - hoping you hear back (VERY SOON) about the procedure.
Posted 5/6/2011 7:19 PM (GMT 0)
hi connie, posted a question to you regardong your appointment on another post! should have read here first. sorry. i hope they get it sorted for you as soon as possible and get that ball rolling. thoughts and prayers.xxnatasha.xx
Posted 5/9/2011 9:18 PM (GMT 0)

I still haven't heard anything from Mayo re: Chemoembolization appt.  I called the main appt. number today and they showed nothing in the computer.  Then I checked the mail--nothing.  I then called my hepatologist's secretary and left a message for my hep doc asking if she had spoken with my Interventional Radiologist about an appt. for me.  So I'm hoping that the squeaky wheel will get some attention and action.  I'm very anxious to get this done.

Hugs,

Connie

Posted 5/10/2011 3:48 AM (GMT 0)
Connie,

You have to be the squeeky wheel sometimes, and especially in your situation. So squeek away! Hoping tomorrow brings some progress toward appointments getting started.

Mer
Posted 5/10/2011 4:34 AM (GMT 0)
Don't they know who they're dealing with?
Posted 5/10/2011 7:59 PM (GMT 0)
I got a call from the Transplant Clinic today. My first appt. is for next Mon. afternoon. I have to register (they require that every year) and an hour later see the nurse. I was told that I had to have someone with me for this. This might be a problem and isn't really necessary, in my opinion, but it's "protocol." (David, apparently they don't know who they're dealing with...it's not like I'm totally new to all this.) I told her I would try to get someone...thinking of the neighbor who offered me a ride, but I know she's busy Mon. AM. I also wanted to get the chemoembolization done first before the evaluation begins, but the person I spoke to said it may be part of their testing process for transplant. I still would rather get it done before scheduling anything else. She said she would have the nurse get back to me about that.

Hugs,

Connie
Posted 5/10/2011 8:03 PM (GMT 0)
well bring a dog... and tell em that's good enough.. u go girl...
Posted 5/10/2011 8:05 PM (GMT 0)
i hope it all goes well for you connie, im sure you will get things done just as you like, if not squeek louder!! thinking of you.xxnatasha.xx
Posted 5/10/2011 8:52 PM (GMT 0)
At least you have an answer as to when. Maybe not exactly what you wanted, but at least you're on their schedule.
Posted 5/10/2011 9:11 PM (GMT 0)

I still don't have a real answer to the chemoembolization, David.  She was just "guessing" that it might be a part of the testing process...which makes no sense.  I will try to get it straightened out on Mon.  I did get the neighbor to go with me on Mon., but if they're going to insist on someone being with me for every appt...I guess I won't make it through evaluation.

Hugs,

Connie

Posted 5/11/2011 12:50 AM (GMT 0)
Connie Darling, I'ts a shame I'm not there I'd love to take you to the hospital ,then maybe you wouldn't be so hasty in locking my thread! In all seriousness I would take you and could you please let me know what's involved in the chemo? Pain ,hair loss etc. Let me say I'm not real keen on the idea. Dr V told me I've got to be really crook to get on the transplant list ,but didn't mention cutting the cancer off. Maybe he will next Thursday ,.Is that possible ? It's on one of those lobes you had cut off so can they do the same to me?
Take care Mick
Posted 5/11/2011 12:58 AM (GMT 0)
darn it hep babe don't make me come down there and attend those appointments.... there has got to be away around that garbage... don't give up so easily.. you wouldn't let us... there has got to be a WAY.... think or reach out... let us think... talk to one of us... we are talkin ur life girl... Sandi
Posted 5/11/2011 2:34 AM (GMT 0)

Sandi, I know.  I'm trying to think of solutions or compromises.

Mick, I definitely would never lock another of your threads or delete your posts if you could come with me.  Hey, 2 for the price of one, huh?  But it looks like you will have to put all your energy into getting yourself cancer-free.

In answer to your questions, no you don't lose hair, etc. with chemoembolization because it is directed at the tumor...targeted to the tumor...not a systemic chemo.  I really didn't have much appetite the first couple of days afterwards.  But I did drink juice and water, and eat fresh fruits and a little soup.  There was only a slight discomfort at the point of entry (the femoral artery in the groin) after the treatment.  Later there were some mild twinges in the liver area, which I was told was the tumor dying. 

As for surgery, your tumor isn't that large and they could probably cut it out.  But they will suggest chemoembolization first, guaranteed.  If so, go for it.  I think I went home the same day and slept for 2 days.  They might want to keep you overnight, as some do.  Something to ask about next week.

Hugs,

Connie


Posted 5/11/2011 3:43 AM (GMT 0)
Once again Connie , You've put my mind to rest and been a wealth of knowledge. I can only say thankyou and wish you the best for the future . You should be considered an inspiration to all.
Mick and Karen
Posted 5/11/2011 4:17 AM (GMT 0)

Thanks, guys.  :-)

Hugs,

Connie

Posted 5/11/2011 11:30 AM (GMT 0)
check ur local church... or cancer society ... check out local volunteer banks... check senior citizen groups... they usually have volunteers...
Posted 5/11/2011 11:31 AM (GMT 0)
would social security pay for a caretaker?? to go with you...
Posted 5/11/2011 8:25 PM (GMT 0)
I'm not sure what you mean by SS paying for it.  I have straight Medicare.  I have Medically Needy Medicaid as a secondary insurance, with a high deductible.  The only thing they've ever paid for is some blood work that Medicare didn't cover completely...they paid the balance.  I know Medicare will not pay for a caregiver or companion. 

Hugs,

Connie

Posted 5/12/2011 12:58 AM (GMT 0)
well some of the people I know on SSI have homemakers... I thought maybe they' do something like that... guess I was wrong..
Posted 5/12/2011 1:12 AM (GMT 0)
The transplant coordinator will be able to help you, or turn you on to who will at the clinic.
Posted 5/12/2011 1:44 AM (GMT 0)
Sandi, sorry...I have SSD based on the number of years/quarters I worked--which were considerable.  Medicaid actually covers more things than Medicare.  I live in a Senior apt. complex and see aides here all the time doing laundry.  I'm betting that their patients are on Medicaid or private pay.

David, thanks for the info.

Hugs,

Connie

Posted 5/12/2011 1:40 PM (GMT 0)
this is what ticks me off about the system... oh I could write a page... or two or three... just angers me... so the difference factor is working...oh you know Im wrong this guy worked too was a truck driver... for 30 years... Im sorry... but were in MN and u know were the state that has lots of different programs... not sure.. may be a local thing... but our hospitals and clinics have volunteer programs... patient tenders... kind of ... this must be stressful for you...and makes me feel helpless bein so far away cuz id sure be there in a second... Sandi
Posted 5/12/2011 4:45 PM (GMT 0)

Connie,

Have you checked your local American Cancer Society?  I know they offer rides to treatments, free of charge, I don't know if they have volunteers to stay with for the visits though.  Lemme know if you want me to speak to our San Diego staff partner for contacts over by you.

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