Re: tubeless in seattle?

Hi Mary,
It does sound like Tom and I are on similar tracks. The monthly "scans" are just blood work to follow the state of my liver chemistry - no CT scans or the like at this point. If the episodes start up again (God forbid!) they will be doing CT and probably ultra sound to find the blockage as before. I am taking Ursodiol as a bile thinner. Have no idea if it is effective at this point but the bile continues to flow, so...

As far as a surgical option if needed, the two surgeons we've talked to are less than eager. They are concerned that the radiation has left much scar tissue which would make already risky surgery much more risky. So like Tom, I'm REALLY wanting to avoid either a partial resection or a transplant. But in the end, my trust must be in the Lord, not doctors.

Im praying that God will give you and the docs guidance through this current maze and that Tom will experience renewed hope and God's peace.

God Bless!
bob

Re: tubeless in seattle?

Hi Mary,
Hope all goes well meeting with the new doctor. smile
Betsy

Re: tubeless in seattle?

Well, we wasted a beautiful day driving to Pittsburgh. I really don't like it when a Dr. asks you why you are there after spending time and money sending a boatload of info ahead of the appointment. We weren't really planning on switching Drs. anyway but really wanted some insight into these abscess issues and I don't think that was even discussed. He's just sure the cancer is back due to the rising ca19 and threw a lot of cold water on the whole transplant idea. Tom says he doesn't have cancer in his liver anymore so I think I'll choose to believe him. I honestly think he knows what's going on just as well as anyone else. It is an interesting difference between surgeons vs. medical( internists). I prefer the surgeons approach personally. They seem like they run a tighter ship. Anyway, he will get his stents removed on Nov 10th and hopefully will not have any complications.I guess we will just keep putting out the fires as they pop up. As others have said before, "it is what it is!" Right now things are going well so we'll enjoy these times and not worry.       Mary

Re: tubeless in seattle?

Hi Mary
What the heck!  I would be very annoyed with that doctor.  I'm sorry you didn't get more insight into Toms liver issues.  And you can't just say you think the cancer has returned just because of CA 19 levels.  Im glad you posted because I was thinking of you and Tom.  I do hope his stent removal goes well in November.  Did you go to UPMC today?  I know we discussed this before but would you  ever consider heading north again to try  the Cleveland Clinic?

Betsy

Re: tubeless in seattle?

Hi Mary. I think you had a beautiful drive with Tom on a beautiful day and it verified to you that you are doing good with the doctor you have. You may have always wondered and now that security is a good feeling. Guess all doctors are not created equal! Good luck to Tom for November 10th and just keep your fire hose ready but hope you don't have to use it too often.

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: tubeless in seattle?

Hi Betsy,
   Yes, we went to UPMC LIver Disease Center. When we went over before we went to the Liver Cancer Center and those guys ( surgeons) were all gung-ho about doing a transplant, ecspecially while Tom was still doing well. This guy ( the director of the center) said he would have to be on his death bed , in ICU, on a respirator etc before he could get one. I think the difference is cadaver and live donor livers. Anyway the guy was really strange, the director of the center telling us he didn't handle cases like this, kept contradicting himself, just really strange. I wouldn't want him for my Dr. I think we will stay put right where we are. The Docs are so much better to work with at OSU and we are comfortable there. I really didn't have a problem with them it's just these abcesses are a worry and we thought they would have more insight dealing with disease. But I guess thats not their thing-not really sure what is!? 
   Yes, Lainey it was a great day for a drive and even though I am a big Browns fan driving into Steeler country I have to say Pittsburgh is one of the prettiest cities I've ever been in. The entrance through the Fort-Pitt tunnel is always spectacular, ecspecially on a sunny day! Hope you had a great time last night with the kids. Give Teddy a birthday hug from me and Tom. Take care and enjoy you're honeymoon. These are very precious times. I'm glad things are staying peaceful for Teddy and  hope he remains painfree.   Mary

Re: tubeless in seattle?

Tom is driving to Columbus( by himself) tomorrow for bloodwork and MRI. I guess this has been scheduled since his hospital stay in Sept but no one bothered to let us know until Fri. If I had known, we would not have gone to Pa but I was worried that they weren't following up at OSU. This is the problem with big University hospitals. You have residents writing the discharge orders and they don't always get things straight. I've always been pretty involved and called, e-mailed etc but have kind of backed off lately so I wasn't being such a pest and now we are not getting communications straight. This shows that it is often necessary to be a pest in order to keep on top of things. Hopefully his bloodwork will have improved but I expect his ca19 to still be high. His liver is a mess right now along with swelling and inflammation in his duodenum. He even had stones that they had to sweep out of his ducts in Sept so I think we shouldn't expect miracles. I honestly don't even worry about it anymore. It's just the way it's going to be from now on. 4 1/2 years now of basically really good health with a few bumps here and there- we've been incredibly lucky regardless of the future. I just hope they don't bum him out too much because they will probably tell him they think the cancer is back. Of course they have been saying that for over a year and still can't see a thing.
Here's hoping our old truck makes it to Columbus and back!! We've been car shopping but I can't bring myself to make a car payment again! It's been 10 years without one and it's been great! Happy Sunday everyone!!   Mary

Re: tubeless in seattle?

Mucho Good Luck to Tom. Just goes to show ya, us Caretakers get in to that mode of "nothing can happen without us" but ain't it the truth??? You know, how you guys are takig your journey is what happened to us. 5 years of kind of gliding through and then all of a sudden things were not making sense to me and then I found out why. But them as we know each case is different. Hang in there Mary Tom will do fine and you are only a phone call away. So to speak.

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: tubeless in seattle?

Mary....safe travels to Tom.  I am hoping for the  old truck to hang in there.  I agree in that keeping track of everything entailing healthcare for a loved one truly can be overwhelming.  I have to do some research, but I know that there are some helpful tips and hints including, printable forms for this overwhelming task.  I will post it again.  Of course, you have accumulated so much knowledge, it might be better just to ask you. 
I am crossing my fingers for good news coming your way.  This includes the word "stable," as it has taken on a new meaning on this site.
Best wishes,
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: tubeless in seattle?

Hi Mary,
Good luck to Tom tomorrow.  I hope he has good results from his MRI and blood work.  It is hard to stay on top of regular follow-up appointments when you are busy putting out fires.  I usually have to call my surgeon to find out when he needs to see me again.   

Betsy

Re: tubeless in seattle?

Mary,
I love your 'attitude of gratitude' expressed in your posting. I continue to pray that you and Tom will have many more years for which to express gratitude. And of course I'm praying now for Tom to get good news today...

Betsy,
Any change in your situation? I'm awaiting good news from you...

God Bless!
bob

Re: tubeless in seattle?

Bob,
  Since Tom's diagnosis I have lost 2 sister-in-laws to cancer, 53 and 60. We never imagined that Tom would still be the one around when he was first diagnosed. HE has a great attitude and is thankful for every day. Ecspecially when we've seen so many younger people fighting and some losing their battle every day. Both of us fuss about things sometimes, not enough money, we're tired , too much work and not enough time( we have a 160 acre farm), on and on and then we stop and think about the fact that he's still here and Glenda and Rosa are gone and how incredibly lucky we are. We've had and raised our kids, we have 3 grandchildren, my parents are still even alive and in their 80's and doing well.  Life is great and I am very grateful. I wish everybody was as lucky as we've been!!     Mary

Re: tubeless in seattle?

Tom is doing well. His MRI was good, the abcesses appear to be gone and bloodwork is good. We won't know about the ca19 for a day or so.  Next appointment in 6 months if all goes well with stent removal, etc. Thanks all, Mary

Re: tubeless in seattle?

That is wonderful news Mary. I am so glad to hear it. I guess that truck has a little more life in it. Glad you got such wonderful news and tom got back safely.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: tubeless in seattle?

Mary,

Terrifico news! Just shows Tom is as good a runner as your old truck!

I always say, there is no car like an old RUNNING car. In July I bought a brand new 18 year old car. When I called the insurance, I think the lady thought I was crazy. It has manual windows and door locks and some of the door handles are broken but I think if I am giving someone a ride, they ought to do a little work.

Patty

Re: tubeless in seattle?

Hi Mary,
So glad to hear about Tom's MRI and good labs.  Yeah!   I'm glad the weather cooperated today and he had a safe trip.   Once he gets his tubes out, he'll be a new man! 


Hi Tom,
Thanks for checking in - still leaking and still scheduled for a surgical procedure on Nov. 19th.  My doctor is going to try and glue the leaking duct, that is if he can find it.  This will be the longest I've gone between tube changes and I have to say I'm feeling so much better.  I haven't been as tired and my appetite is better.   For the first time in 1-1/2 years I had some friends over and it was so nice!    Kinda felt like my old self again.  How's everything with you?

Betsy

Re: tubeless in seattle?

Mary......Congratulations on both; Tom's great report and the truck returning safely with him.  I am hoping for things to settle down a bit now.  No crops for the winter; does that mean you can relax and take it easy?
Best wishes,
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: tubeless in seattle?

Patty....glad to hear that you have bought a new car.  I suppose that I will catch a ride when returning for ASCO.  I am concerned though, do I have to do anything else but roll up the window.  The doors close, right? 
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: tubeless in seattle?

Thanks all.
Patty,
  I love the idea of your "new" 18 year old car. My daughter, who helps the economy greatly by buying new vehicles every few years commented about Tom and I not taking care of our vehicles very well. I said, Are you kidding? Every vehicle we own has almost 200,000 miles on it. We have to take care of them to keep them going that long. I can't help it that they rust and the doors and windows quit working!! Ha! In fact our hold cargo van that I called "the tank", that we used to haul plants to market etc., just died last summer with 227.000 miles on it. It was the best vehicle ever, never cost us a dime other than regular maintenance. That will probably never happen again.
Marion,
   Yes ,we are done for a few months. We're going away for a few days this weekend ( renting a car) and then he'll have his ERCP and I guess a colonoscopy at the same time next week.That caused some joking with the Doc yesterday I guess. Which comes first ...oh I won't go there!
Betsy,
  I am really glad you are feeling better. It's amazing how your body recovers if it just has time to heal. It usually takes Tom 2-3 weeks to get back to normal after a procedure, ecspecially if there is some infection. Best wishes for a successful "glueing". You are the first person I've ever read about having that done. I really hope it works and you'll have to let us know how they actually do it. It sounds very interesting.
          Happy election day all. I am SO happy this will be over. We have worn out our remote muting political ads on TV. I quit answering the phone yesterday, we got so many calls. 
                            Take care, Mary

Re: tubeless in seattle?

Hi Mary.
Is tom still going in tomorrow to have stents removed?  Please tell him best of luck from me!

Betsy

p.s.  how are you?

Re: tubeless in seattle?

Hi Betsy,
Yes we are going Weds. I imagine they will take the 2 he has in,out and put one back in for a few months. He still show signs of blockage as far as his bloodwork goes so I'm actually hoping they do put one in. I really don't want him to get sick over the holidays. His ca19 has come down to around 2200. That is still very high but at least it's not 3500!! You've got to be grateful for anything positive, as you know!! I hope things go well for you soon too. Wouldn't it be great to have all of these problems solved before the new year?!! I hope so! Take care, Mary

Re: tubeless in seattle?

Tom is doing fine after his stent change yesterday. They did put one back in so we didn't have to worry about problems over the holidays. They'll probably take that out and leave him stentless in Jan. and will also do colonoscopy then so he will get completely checked out. The ca19 does elevate for colon cancer too so that had me a little worried and I guess the Docs thought it was a good idea too.
Betsy,
  I really hope you can get your problems all taken care of as soon as possible. When do you go for your next procedure? I can't wait to hear you saying you're "tubeless in Cleveland". Are you a Browns fan? We're really excited about their turnaround! My family are all huge Steeler fans so it's great to finally see the Browns doing something positive.!
                 Take care, Mary

Re: tubeless in seattle?

Mary we are so very happy that Tom is doing so well. Now you can enjoy your Thanksgiving!

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: tubeless in seattle?

I am excited to say that I am celebrating my 56th birthday today!!! My first healthy birthday in 2 years!!! I spent the last 2 at Barnes, and today I am going to Macy's, a much better choice (plus its coupon day, tell me theres not a God). I just want all of us to know there is hope, miracles do happen!!! Lots and lots of prayers!!-Cathy

Re: tubeless in seattle?

Hi Mary -
Glad to hear Tom is doing well after his procedure.  That's such great news!  I hope he continues to feel good.  Now he is appointment-free until January, right?   Wonderful!

I'm still feeling pretty good....still scheduled for procedure on Nov. 19th.  The drainage has dropped off a little - who knows, maybe its finally healing.   As long as I feel good, I can make peace with the drainage bags.  It will be a year this January. 

I am a Brown's fan but must confess I don't follow them too closely.  My husband and son are going to the game this Sunday.  They'll give me the highlights smile

You have a farm, right?  All tucked in for the winter?

Betsy