mlepp0416
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Quick Update – Tom is off the IV Antibotics and now on oral antibotics and doing a bit better. He is still sleeping a lot, but that is something his body needs right now. He’s lost weight again, down to 104 lbs.
Yesterday was a pretty good day all in all. He even took a ride in the car with me and sat in the car while I went in and got some much needed groceries.
We’ll continue to take it one day at a time and with the antibotics I expect to see continued improvement!
HUGS!!!!
Margaret
I work for a Medical Insurance company. It sounds like the hospital you are considering is an out of network hospital. Can you work with your insurance company to find a In Network Hospital that could do the procedure?
You always have better in network benefits than when you use an out of network provider.
You may want to see if you can get a mileage wavier. Most medical policies have something regarding a mile radius. If there are no in network providers that can supply the service then they will do a waiver for the out of network provider, paying the same price as they would for an in network provider.
You could also have the hospital contact your insurance company and they can work out an agreement that for your treatment they will agree to a negotiated price that they will accept.
If I can offer any further advice, please let me know.
Margaret
Thanks Lainy, Jeff, Marc and I were/are friends on Facebook, that is how I got the news.
Go with God.
MargaretI Just wanted to let everyone know that Jeff Grieder’s partner in life passed away from Cholangiocarcinoma – Marc Wynn Mecklenburg, October 19, 1954 – July 16, 2011.
He is gone but not forgotten.
Thank you to everyone for their support of Jeff and Marc.
Margaret
Thanks everyone! And what a difference 24 hours on good meds makes. My hubby is back! Not that strange man who was here yesterday. There was some thought about taking out the external drain tube, but his IR was afraid of that causing complications over the weekend. So, it’s back onto a regime of antibotics for at least a week duration. I will be administering those meds, Tom will be released from the hospital tomorrow morning and we meet with Home Care Medical at 3pm to get all the meds and the schedule of how to administer them.
He will have his scheduled tube exchange on Monday as planned. 5 days before the tube exchange ane he comes down with an infection. At his IR’s request we started flushing the tube every other day rather than every day. Just goes to show you shouldn’t mess with a good thing and if it ain’t broke don’t fix it!
Today he was coherent and does not remember much of Thursday at all. So we have our KICKIN shoes back on again and will go another round with this dreadful cancer.
Tom is back down to 105 lb so I have to work on fattening him up once again!!! I’ve got a lot of tricks up my sleeves! Little does he know what he’s in for when he gets home….tee hee.
Once again I want to thank everyone for all of their thoughts and prayers, I couldn’t do it without all of you.
On the good side, both Tom’s son and daughter took it seriously this time and spent hours up at the hospital with their dad – I think the DNR order finally made them aware that their father will not be here forever and his condition is as serious as I’ve tried to get them to understand…at least I hope so.
Hugs, Go with God and KEEP KICKIN’ THAT cancer!
Margaret and SuperMan Tom!
Lainy – I know I haven’t been on this site much lately, too much stuff going on in daily life! That and trying to get all kinds of projects done. Just not enough time for everything!
Hugs & Love to you and everyone else on this site.
Margaret
Cath-25:
Welcome to the site, you now have a large family to support you. My husband Tom was diagnosed in Mar ’08, had a left liver resection in June ’08 and 18 months later turned jaundiced. He had a new tumor in the remaining part of his liver. This new tumor was inoperable because it involved the hepatic artery. His then onc told him to go home and get his affairs in order. We did not listen and sought 2nd, 3rd and 4th opinoins. Thank goodness we did.
He underwent 28 rounds of radiation, then oral chem (Xleoda) then had a port installed when a radiologist mis read a scan and reported mets to the groin area. Then he underwent about 4 rounds of a combo of Gemzar and Cisplation (sp?) and he is still here 20+ months later.
Currently (today) he as admitted to the hospital with what I am hoping is an infection, but won’t know more until tomorrow.
Tell your uncle that he has his ‘young’ age on his side. To never accept NO for an answer. Make sure that the doc’s who are treating him are familiar with Cholangiocarcinoma or access to doctors who DO. Write down questions as you think of them. Take a digital tape recorder with for all doc visits and re-listen to them after you return home. You’ll be amazed at how much you may have missed and how many questions you will come up with when listen to the tape.
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Well folks, the roller coaster has started again. First Tom broke a verterbrate in his spine and after 2 weeks the pain was so intense that they increased his morphine, and then did a vertboplasty where they inject two needles into the verterbrate and ‘glue or cement’ the verterbrate back together. The pain is then supposed to get better. In his case it did not.
Tuesday of this week Tom was well enough to drive himself to the doctor’s office and was given some type of lidocane patch at a cost of $457.00 for a 30 day supply. Wednesday evening I noticed that something was ‘off’ with his balance and his walking. He’s been using a cane for the past 4 – 6 weeks, but was having difficulty Wed. evening. This morning at 4am he got up to go to the bathroom but his legs gave out on him and I had to help him the rest of the way. It took 10 min. to walk about 30 feet from the bathroom to the 4 season room.
Then he started talking goofy. Statements that made no sense, was really confused, uncoordinated, unable to walk or stand unassisted. I called his doctor and daughter. My boss insisted that I log off the phones and go be with him (I work at home). I’d left him in the recliner sleeping at 7:25 and by 7:50 when I got back to him, he was sitting on the floor in front of his recliner. He had no idea why he was on the floor or how he got there.
I called the doctor’s office back and 10 min later they called back and told me to bring him in. Got the wheelchair out and between his daughter and I we got him into the wheelchair, out to the car and then to the doc office (which is attached to the hospital)
When his doc saw him sitting in a wheelchair, being so unresponsive, he was as concerned as I was and started the process to get him admitted. It could be a number of things, Mets to the brain, ammonia levels too high, and infection in the liver, blood or elsewhere in the body. They took a chest x-ray, got a number of tubes of blood, specimen of the bile from his external bile drain bag and a urine sample and are running cultures on all. They started him on a broad spectrum of antibotics, cipro and flagyl which will help start curbing an infection (if that is what it is)
Because Tom smokes, I INSISTED that they put a nicotine patch on him. At 6pm this evening I left the hospital and came home to get some rest. I will most likely not be going to work tomorrow as I certainly want to be there when his doc does his rounds. Just prior to leaving the room, doc turns around and says “Just for clarification, you do want a DNR, correct?” The hardest thing I have ever had to do was say “Yes”. But if anything major were to happen and Tom’s quality of life were to be worse than what it is today, he does not want to live like that and he knows that I would most likely not be able to care for him if he needed round the clock care. For any of you out there who have had to answer that question, you know exactly how hard it is to say yes, but then again, it’s what I would want for myself as well. I’m not certain how much one man can take. He has lost the 20 pounds he had gained.
So if you can find it in your hearts to offer up a prayer or two for my beloved Tom I would greatly appreciate it.
Hugs to everyone.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret & Tom
My husband’s Tom’s ‘numbers’ were all excellent in Jan ’08, in March ’08’ his alk phposphate levels were 10 x’s elevated. That was the first clue that there was something wrong. He has been through the mill, from erct’s, ctscans, mri’s, tests upon more tests, surgery where they removed 3/4’s of his liver. No chemo/radiation after surgery. 18 months later he presented w/jaundice and they found a new tumor in the rifht remaining lobe of his liver. Surgery is not an option. He underwent radiation and then oral chemo, then iv chemo. He was given 6 months to live by one oncologist….and he is still here 20 months later.
Go with God and KEEP KICKIN’ THAT cancer
MargaretHi Cindy:
My husband Tom had a successful resection in June ’08 with clean margins, noradiation or chemo and he presented with a new inoperable tumor 18 months later. He then had 28 rounds of radiation followed by oral chemo (Xleoda) and then IV chemo (Gemzar and Cisplatin). In Dec ’09 he was given 6 months to live and he is still here and doing rather well. He does have an external drain bag to drain the bile so he’s not so yellow.
Prayers and a positive attitude.
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Ron:
Your posting was wonderful! It brought tears to my eyes. I know that Lucille is at peace and bless you for never leaving her side. As caregivers there are times when one just wants to throw in the towel, but we don’t because of that LOVE!Go with God and keep your memories close to your heart.
Hugs,
MargaretTom had his tube exchange today but the doc could not get the stent in. He said there were 2 openings that looked positive, but both ended in blind alleys or dead ends…oh well, he’ll just have to continue with the external bile drain and I’ll just have to keep flushing it every day…and life goes on!
I guess it could be worse…there are a lot of things that I would NOT like to do, the flushing and the bandage changes are a lot easier than other things on a scale of 1 to 10 !
For now we’ll just have to continue to make liars out of those doc’s that said he’d be dead in 6 months.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Had a couple of bad days, Tom’s Onc called on thursday and reported that his CA19-9 (Tumor Markers) are elevated up to 169. They had been 69. Then of course Tom was in a funk, severely depressed and said that he knows he is going to die, every little ache/pain was the “Cancer coming out, etc”. After 2 days of listening to him….out came the wifely talking machine again!!!!
As a team we have decided to NOT FOCUS on the numbers! But rather focus on what is important to him and us! Spending time with each other, doing the things we like to do, camping, spending time with grandchildren, more time with Lil Tommy (2 yr old). Although Tom said that he would not do any more chemo…after the ‘talk’ he has now decided to make the decision after he has his CTScan (In June) and listen to what the Onc recommends. I told him, he has two choices A) Do nothing and live out the remainder of his life, however long that may be OR
Put on his boxing gloves and do either a few rounds of chemo or radiation (doc’s choice) and prepare to be here for another 20 months. His response “To heck with 20 months, I WANT 20 YEARS!” (That’s my man!)I also gently reminded him that in Dec. ’09 when he was given 6 months we decided to fight and that has gotten us an extra 20 months and that he has had some bad days but for the most part he has had many more GOOD days!
So apparently our roller coaster ride has begun again and we’ve got our boxin gloves on and we’re going to starting KICKIN’ THAT cancer once again!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Heartdoc:
My husband Tom was diagnosed with CC when he was 61. Three months later he had a successful left lobe resection (70% of liver removed) and his oncology team at the VA Medical Center in Milwaukee said he did not need chemo since they had gotten clean margins. (Mistake) He presented with an inoperable tumor 18 months later. In Dec. ’09 his then oncologist gave him 6 months and said radiation/chemo would not help. We did not listen to that, and found other docs who were willing to take a chance to help.It is now 20 months later and Tom is still here with me, and turned 64 in Feb. 2011. After 28 rounds of radiation, a few courses of oral chemo (Xledoa) and a few courses of IV chemo (Gemzar and Cisplatin) his inoperable tumor is dead and all of his numbers are coming down nicely. Still high but much better then they were.
During the past 20 months we have always remained positive and taken it one day at a time. I do not know how much longer he will be here with me, but I do not that keeping a positive attitude and that the power of prayer can do wonders, not to mention having doctors who ‘think outside of the box’!
Go with God and prayers are coming your Mom’s way.
Margaret
Tim:
Baycare Aurora in Green Bay is where my husband Tom is being treated for his CC. After the VA Oncologist told him to go home and that he had 6 months, we met with Dr. Nancy Davis and Dr. David Rhoady and between radiation and chemo he is still here some 20 months later. Not sure which town in Northern Michigian you live in, or how far Green Bay would be for you, but at least these doctors gave us some hope and were willing to take a chance!
Tom had his original liver resection surgery at the VA hospital in Milwaukee.
Your Mom has prayers coming her way from Green Bay!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
