My Husband and Cholangiocarcinoma – Part 2
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Spent about 3-4 hours in the ER last night. Tom has developed Ascites and his belly is very swollen with fluid. They did not do the parenthesis last night because the ER does not have the ‘best’ equipment. Instead, since he was not in duress they are getting him scheduled for the procedure sometime today. I will be happy once it is completed and his belly looks more ‘normal’.
He has so much fluid in his system right now that it’s starting to back up into his lungs and he is gurgling with each breath he takes. I’ll start work at 7:30 am and let my boss know that I have to have some time off to take him in for his procedure.
On the flip side – Papa Tom and I are not only going to be grandparents again (baby due April 2nd) but we just found out we are going to be GREAT grandparents (baby due in June)! I’m just not ready for the G-GMa part! But it will be fun!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Cathy: If anyone misses Tom’s port then they would have to be blind! He is so thin that his port really sticks out and the three points are very prominent! Think of a 6ft tall man, medium build, but weighing 115 lbs soaking wet. You can see all his bones, ribs, etc cause he is so thin. Then there is this large lump in his right chest just below the collar bone. Can’t miss that darn thing. Now if he were a heavyweight then I could see it. So far no one has missed his port! In fact we have to keep a close eye on his port cause he is so thin that they are now worrying about those three points poking through his skin. If that happens I don’t know what they will do except to perhaps install a new one lower on his chest, closer to his ‘breast’ area, cause there is a little bit of meat there.
You are right, about this site being a place where we can share experiences, rant and rave, ask for suggestions, cry, laugh and love!
Pam – feel free to ask any questions you need answers on, I’m always happy to share experiences, knowledge when ever I can. And if it’s something I don’t know about, then most certainly there is someone on this site who would be able to answer or give some type of experience! That is what this site is all about…keeping ourselves educated and informed on this evil cancer!
Go with God and KEEP KICKIN’ THAT cancer. Round 3 of 5-FU for Tom tomorrow. I hope all goes well this time around.
Hugs,
MargaretMargaret-Trust me, missing your port happens. I had the same expierence, it was done by one of my favorite nurses. I had to point out that I didn’t think my port was that low, it was so painful I knew something was wrong. Amy was my nurse many times on the transplant floor (I was there 9 times before transplant)and had acessed my port so many times. Poor Amy, she will never live it down, nurses offered to put a bulls eye on area for her!!
That is why this site is so good, there is nothing we can’t share or expierence that someone can’t relate to!!
Lots of prayers-CathyHi Margaret,
I am glad Tom’s tube exchange went well. I am also glad that I have my own private teacher. You!! I appreciate the time you take to explain things to me. I am trying to learn as much as I can. I know I can come to you, Lainy, Marion, and many others if I have any questions and you are right there with an answer. Thank you.-Love, Pam
Happy, Tom’s exchange went so well, didn’t know he was worth so much money! He is priceless! And so are you!
Hi Margaret,
Glad Tom’s tube exchange went well. Hope that he is feeling better today. Tom and you are true fighters against this terrible disease. Hugs, PeggyP
Thanks everyone. The tube exchange went wonderful…he has a great doc for that!
Pam: An IV ‘PUSH’ is when they use a syring to PUSH any medication (including chem) into the body rather than letting it drip into the body from the bag hanging on an IV pole. As you watch the Eob’s (Explanations of Benefits) come in for Lauren you will be shocked at how much some of the treatments and procedures cost and also at how much the insurance companies discount the claims! Some are discounted more than 50%, good for the insured…but not for doc/hospital! And you will learn the lingo – faster than most laypersons, because you have a daughter going through itl Tom is well pat 1.5 million already and more with his newly discovered tumor.
Hugs,
MargaretHi Margaret,
Sorry to hear that you and Tom are back to the hospital again today. I hope the doctors can get to the bottom of Tom’s lung issue asap and also that his tube exchange goes well.
My best wishes to you both,
Gavin
Dear Margaret,
I hope Tom will be alright. As for the anti-nausea drug with chemo, Lauren gets a drug every time that they put right in her port called palonsetron. The nurse fills it into a syringe from a vial and puts it all in at once. Is that what an IV push is? I don’t know some of the lingo. Anyway, it is supposed to keep Lauren from getting nauseous for four days. She also takes compazine and ativan as needed. It really works for her. Maybe you could ask about that for Tom. I noticed on the hospital itemized bill it is $1478.00 a shot. It must be crushed diamonds or something.HAHA!! My prayers are with you. You are such an informed and wonderful caregiver. Tom is very lucky to have you. Take care and good luck.-Love, Pam
We are off to the hospital again, we were there Monday cause Tom has something going on in his lungs. They are going to be culturing a specimen to see if they can tell what it is. Today is his monthly tube exchange.
Pam – I can’t believe that someone who is specifically trained in accessing a port could miss it. There are three little points that stick up in the center of the port and that is where the needle goes in. I know that not everyone can access a port UNLESS they are trained on it. Lauren is correct in insisting that someone who can do it right does it. Here’s to hoping that Lauren does not experience anything like that again! As for her experience with the biopsy….I am flabbergasted with that one.
I did speak to Tom’s pcp on Monday and he said in a chemo situation they should not have done a push with 50CC of the anti-nausea drug. They only do that in a inpatient or ER situation when it’s urgent. In a chemo situation it’s meant to drip in slowly so that the person getting it gets the most benefit from it. You don’t get that with a push. And he recommended that we question it at the cancer center.
I hope that everyone has a WONDERFUL day.
Go with God and KEEP KICKIN’ THAT cancer.Margaret
Margaret,
Sorry you had problems today. Marion, thanks for all of your wisdom. We had two things that weren’t done right since this whole cancer thing started. When Lauren had her biopsy, everyone kept telling her it would be a piece of cake. Her IV didn’t seem to be working really well. (This was before she had her port.) They gave her something in her IV to numb the area. When they went to do the biopsy, she said it was like a needle going through thick, tough, steak and it hurt worse than anything she ever felt. I don’t even know if she was numb at all. When she got back to recovery, she was crying so hard because it hurt so bad. The next bad thing that happened was when she went to the lab to have her port accessed for the first time. The tech that stuck the needle in didn’t know what she was doing and stuck the needle beside and under her port. Lauren told her it hurt really bad and it hurt to breathe. The tech went and got a nurse and the nurse said if it hurts that bad then it isn’t in right. The nurse then put it in correctly. This was in a lab at the cancer center where most patients have ports! Well, you better believe every time Lauren goes to the lab, she requests the nurse that can do it correctly. It’s too bad our loved ones have to suffer at the hands of others, but in some ways it makes us more aware of things. Have a nice weekend.-Pam
Margaret, I think perhaps Tom likes to see you speak up as you do it so well. It’s a shame that it has to be done at all! I’m glad the blood work was fine and now he can chillax for the weekend!
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