Topic: Tom's latest...

Tom had his bloodwork and MRI on Monday. The bloodwork is all good now except his CA19 still lingers in the 2200 range. It jumped to that point in Feb when he was so sick with infection. He had a stent replacement with a balloon dilatation yesterday. He came home last night after a very long day and was having a lot of liver pain. He has had a lot of stent placements and never has had any pain so we are concerned, but it's getting better and the Docs think it's just from the dilatation. If he's not better by Monday we're going to have to do something. Hopefully it's okay because we REALLY don't want to go back to Columbus and he REALLY doesn't want them to mess with him anymore!! They'll take the stent out in 6 - 8 weeks and hopefully they will leave his liver alone so he can get on with his prostate cancer treatment. He's scheduled for a seeding procedure the first of July. Pittsburgh told us his he would actually be eligible for a liver transplant two years after prostate cancer treatment instead of three so that was good news. He can hang on that long! He's actually doing great until he goes in for treatments. I think they just get too aggressive sometimes, but I think this is probably it for stents, scoping, biopsies etc. We'll just play the watch and wait game. It's been almost four years now! Who would have thought he'd even still be here!! Take care all,  Mary

Re: Tom's latest...

Hi Mary, pretty good news, I would say. A vacation from doctors!!! Might be just what they ordered without knowing it. Hoping for the pain to ease up and you both can get a little quality of life in now. I know what you mean about the 4 years, Teddy will be 5 in August. We both have Miracle Men!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Tom's latest...

Well, I just got home from Columbus. Believe me, happiness is Columbus in your rear-view mirror!! Tom got up at 3 this morning and was itching, jaundiced,etc and they said to bring him back down. He is to have another ercp tonight or in the morning. This will be his 24 th ERCP!! I couldn't believe it when of the Docs said he reviewed his chart checking to see how many he had over the years. He thought maybe 4 or 5 was the norm but he was really impressed that Tom has had 23 soon to be 24. No wonder his poor liver is scarred and damaged. Hopefully this is it!!  Mary

Re: Tom's latest...

Wow, Mary....sorry about that. Is he trying to get in the Guiness World Book of Records? Ouch, we sure hope this is it! Loads of luck....

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Tom's latest...

They're sending Tom home today without really doing anything. In four years I have never felt like the Drs. have brushed symptoms etc off, ecspecially since we've never been ones to jump to conclusions or be hypochondriacs, but I feel that way now. He has a bilirubin of 3.2 when a week ago it was 1.2, his liver enzymes are out of wack and he's having pain when he has never had pain before and they're telling him he's fine. I hope I'm wrong but I assume I'll be hauling him back to Columbus in a few days. The problem is I am to the point that I think it's time to switch to Pittsburgh for his care. I really don't want him to go back to Columbus because we are actually concerned about them being too aggressive. We're not worried about the cancer as much as we are that they will kill him with all of their dilations, scoping, biopsies etc. I wonder how Betsy Kubbins is doing ? She had a tear in her duct which is what I am really afraid of for Tom. What a mess!! I wish he had just gotten up off the table in Feb. like he said he considered doing. He really didn't want them to do all of this and I don't think it's right for them to do it without your knowledge. All we thought Tom was getting was a stent change or removal on Weds and here they stretched him to the point of him having all of this pain, he has another infection and they scraped him looking for cancer cells when they just did it 2 months ago. Just venting... I'm very tired. I have a greenhouse business that I really need a little help with and last week I had my 23 year old son and a healthy Tom , I've been on my own except for my 11 year old dog since Tues and I'm feeling stressed with  everything. I just wish they had left him alone...do no harm!!! Mary

Re: Tom's latest...

Oh Mary,

I'm so sorry for what you are feeling and what you and Tom are experiencing.   I remember having similar experiences and knowing that although they were sending us home, we would be back in no time at all and I was right.  Keep venting if it's what you need.  We are all here to listen and many of us know exactly how it feels.  I know it is hard, but try to take care of yourself too.  As caregivers we tend to let things go as our priorities are with our loved ones, but you need to take care of yourself too so you can be strong for Tom.

Take care Mary.  I will keep you both in my thoughts & prayers.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Tom's latest...

Hi Mary, Lainy here. I am so sorry for what you guys are going through. When Teddy's Billie rubin went up to 3.3 and his enzymes were off it was due to an infection! When the infection cleared up everything went back to normal. Since they have poked and prodded so much he could have an infection. At this point I don't blame you for wanting to go elsewhere. Good idea. We know you are not a hypo or a hippo! (little humor there to make you smile) GO with your gut, girl!  Funny, I caught Dr. Oz the other day and he was saying go with your gut! I said through the TV, that is my line. I am so sorry you & Tom have to go through all this, like we don't have enough to contend with! Let us know what you do. Hang in there, it has to get better!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Tom's latest...

Hi Guys,
   Thanks. Tom actually wants me to get an appointment for Pittsburgh. He got home a little bit ago. He's still jaundiced and having pain but is a little better. He is on antibiotics so hopefully he'll be better in a few days. I guess the docs actually made it seem like he wasn't really all that sick but his billirubin was 6.1 on Fri and his urine was brown plus the pain. I just don't get it. He was fine a week ago and they made him sick, then acted like it was all in his head! Like he wanted to sit around in the hospital for three days- they obviously don't know my Tom. I'm worried he'll go out and do too much and rupture something! I like Dr Oz. I wish we could go see him. Sometimes a little common sense goes a long way. Take care all.   Mary

Re: Tom's latest...

Mary.....I believe that the infection should be responding to the antibiotics.  Have they cultured it? I am also hoping that the pain Tom is experiencing is related to the stretching and scraping in his biliary tract.   Mary, you have made good decisions all along and I know that you will continue to do so.
Wishing for things to settle down "yesterday."
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Tom's latest...

Mary,  so sorry you and Tom have to go through this...as if you weren't going through enough. 

I, too, 'go with my gut' instincts, though I like to believe it's my parents way of still giving me advise. 

I hope you have better care in Pittsburgh!  My dad was from the Pittsburgh area...a little coal-mining town on the Monangahela river just south of there.

Thinking of you both,
Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Tom's latest...

Tom's doing better today. He looks better too. He says it's the good home cooking! HA! One thing about the hospital, the accomodations are decent but the food really stinks. Anyway we've calmed down a bit and I don't want to sound too negative about OSU , at least re: Dr. Bloomston, his main Dr. They literally saved his life down there! If he had gone anywhere else locally they would have only offered chemo and sent him home to die. It was their aggressiveness that has given him the past 4 years of relatively good health- we just want them to be a little less aggressive now. Everyone gets panicked about elevated tumor markers but we really aren't. He has a badly scarred liver, it may be pre-cirrhosis and everything I read says that causes elevated ca19's. Anyway he will get through the next couple weeks and who knows, maybe stretching this duct will really keep him from ever having a stent again. The pain probably is from the stretching. but boy it really seems like a risky thing to do. I don't want him to lift anything or bounce around on the tractor etc. It makes it very hard this time of year for us. Oh well, I actually like driving our little tractor and mowing so I'll do that and he can stand and water plants for 3 or 4 hours a day! Fun, fun!!
                             Take care all, Mary