mlepp0416
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I don’t know who is more excited, me or Tom! We went to the VA on Friday afternoon as he got his ‘lesson’ in operating a scooter. He should have it within 3 weeks. AND they are sending out a company to install a ‘portable’ ramp for him so that he can get in/out of the house with the scooter. They may have to take off our front porch since the platform is not 5*6 which is what is needed for the scooter and to be able to get the door open. For every inch the door is off the ground you need a 1 ft ramp so we’ll have a 30 ft ramp. Not sure how long it will all take to come together but thank heavens his VA doc was so willing to get a scooter for him! Now instead of me pushing him in the manual wheelchair on our walks, he’ll be independent of me and can just ‘scoot’ along where ever he wants to. It’ll be great and the scooters do well on rough terrian like the lawn, etc.
I’m so very happy for him cause this will give him back a lot of his independence!
Go with God and KEEP KICKIN’ THAT cancer.
HUGS,
MargaretNancy and Doug: Our thoughts and prayers are with you both. I’m hoping that this is just a little bump in the road and they figure it out fast. My Tom has certainly had his bumps along the way and each time I prepare for the end and his docs are able to quickly figure out what the problem is. If there is no blockage, then for some reason his body is not getting rid of the bile, hence he is turning yellow. My tom has the external drain bag because they could not get a stent internalized past the tumor.
Go with God and KEEP KICKIN’ THAT cancer Doug!
HUGS
Margaret and Tom (The pair of Timex Watches. We take a lickin and keep on tickin)
Kate:
So sorry to hear that your dad has been diagnosed with CC. Welcome to the site that no one really wants to join, myself included. However now that you are here, you are not alone. You will find that everyone on this board is very caring and encouraging and helpful!My husband Tom was diagnosed at age 61, went through a successful resection in June 2008, did not have chemo or radiation. 18 months later he presented with Jaundice and a new tumor was discovered. That one was inoperable. After 4 different oponions we decided to go with radiation then chemo. He has an external drain which drains off the excess bile. His first onconologist told him he had 6 months and radiation and chemo would not help. I did not accept that and we moved forward. Since hearing those awful words in Nov ’09, my husband is still here some 20+ months later.
It is a tough roller coaster ride for sure, but having a positive outlook, ensuring that your dad has a doctor that is well versed in CC, never taking ‘no’ for an answer, asking what else can we do/try is important. Do your research, learn as much as you can and just be there for your dad!
You did not say how old your father is, or how his health is otherwise? It sounds like you are on the right track as far as other opinoins.
Go with God and KEEP KICKIN’ THAT cancer!
Hugs and prayers coming your dad’s way from Wisconsin.
MargaretDave;
Keep your memories of your brother alive in your heart and mind and he will be forever with you! So sorry to hear of your loss. Words alone cannot express…Go with God,
MargaretDeanna and George: Welcome to the site that no one really wants to join, myself included.
My husband Tom has been KICKIN’ this cancer for 3 1/2 years now. He was given 6 months to live after a successful left lobe resection. Actually they removed part of the right lobe of the liver too. About 80 %. He did quite well for 18 months, then presented with Jaundice. His then oncologist told him to go home, radiation and chemo would not help.
We didn’t just go home and make plans. We came out KICKIN’ and got more opinoins and went with 28 rounds of radiation, then oral chemo (xleoda) then some iv chemo (Gemzar and Cisplatin).
Currently Tom is now KICKIN’ to regain some of the weight he has lost by boosting up his caloric intake. We are fortunate to have a entire clan of people who pray for him daily. We never take no for an answer, we ask questions, we seek other options. All of that has given him over 20+ months from the day that his ‘then’ oncologist told him to go home an prepare to die, nothing would help him.
So you and George start KICKIN’ right along with us. We are here for you. Please feel free to ask your new ‘family’ anything you need to ask. Someone will have the answer I’m sure. We have all been through so much. And remember Deanna, take time out for the caregiver as well. Even if it’s only an hour. I take 20 min in the morning and 20 min in the evening to walk. Otherwise I work at home and am with Tom 24/7. And as a result of my ‘walks’ I’ve lost over 60 lbs now and am more healthy so I have more energy to take care of Tom!
We just got a baby monitor, cause sleeping in bed is hard for Tom, and our bedroom is at the other end of the house. Now I can hear him yell for me when he needs help! Before I couldn’t hear him. He also has a whistle that he can blow if he needs immediate help. Keep all this in mind.
Go with God and KEEP KICKIN’ THAT cancer.
Hugs to you both and welcome to our family.
Margaret
Lainey;
You crack me up. Of course I remember the timex watch commercials.. I’m almost 60 remember!Thank for all the well wishes. Tom is now ingesting between 1920 – 3500 calories a day. Mostly between Boost Plus or Power Bar snacks. But a calorie is a calorie in my mind! Certainly better than around the 700 that we was eating. I”m hoping that he continues to eat well!!
Hugs,
Margaret
PS. Go with God and KEEP KICKIN THAT cancer!UPDATE: They decided to NOT put in a feeding tube as he is able to swallow and keep food down, they may release him as early as tomorrow. The gastro guy decided that at this point the feeding tube is being put on the back burner, but Tom has to drink at least 3 boost plus drinks a day (900) calories and some energy bars as snacks (about 210 calories) and as much food as he can tolerate. Basically they want him to try to intake about 2400 calories a day. (currently he is doing about 700) so I have my work cut out to get him to be eating so high calorie foods!
This is actually much better news than I was anticipating this morning.
Go with God and KEEP KICKIN THAT cancer!
Margaret
It appears that the roller coaster has begun again, downhill this time I fear. Tom’s PCP looked at his ‘numbers’ from his blood work on tuesday and wants him back in the hospital for 3 -5 days to get some fluids into his body and some vital nutrients as well, to help ‘build’ him up so he is not so weak. Tom has said yes, but will not agree to a feeding tube and wants another DNR in place once he is admitted.
As I walked by him tonight he said “Honey, I need a hug” so I gave him a big long loving hug. I know he is scared as he started crying. He made me promise that his little namesake Thomas E. Jaeger will always know how much his Papa loved him. I gently reminded him that between me and Tommy’s Mommy that he would certainly always know about his papa! And that every time I see Lil Tommy, I would be remembering his Papa too!
At this point, Tom is more worried about me and how I will handle it once he is gone. He is tired, his body is tired and he just wants it to be over because he feels it’s not fair to me. Hogwash! is what I told him. I married for better and for worse, in sickness and in health until death do us part….so he does not have to worry about how I’m handling all this. I’d rather have him here with me be it a day, a week, a month, a year or many more years to come. But I also told him it IS his choice and if he wants to give it up I will back him 110 percent.
I know that part of the problem is that his body is so worn down and he is getting weaker and that is weighing heavily on his mind. He can no longer do the things he loved to do. He wanted to get the garage all finished for me so I have all the tools I’ll ever need to do little projects. I promised him I’d get it finished and he’ll be able to look down from above seeing me do my woodworking projects that I’ve been longing to do. He really wanted to be able to get new carpeting for the house, but with a $4,800 ded, then 10% for the next $3,000, new carpeting is out of the question. I said that carpeting is the least of my worries, but I’m happy that he is still thinking about me.
I’ve never lived alone, so when God does call Tom home, that is the only thing I worry about. It will just be me and my kitty cat ‘Bear’.
I’m hoping that this is just a short roller coaster ride and that whatever the doctor is planning works and I get my hubby back home once again.
I’m also very grateful that my employer is so very understanding and I get the time off that I need to take care of Tom when these things arise.
To all of the CC Patients on this site: We Caretakers do what we do for you out of love, for no other reason at all. So please let us do it – let us help you whenever you need or want help. It is a choice we have made willingly.
To all of the Caretakers on this site: Thank you for making your loved one comfortable, for taking care of their needs even if it means forgetting about your own needs for a time. Thank you for being there for him or her, for doing the things you do every day for your loved one. We have all been through it, there will be more caretakers that will have to go through it and we all understand what a tough job it is. So KUDOS to all of you and a great big VIRTUAL HUG to each and every one of you! From one caretakers to all the other caretakers out there.
Love and Hugs to everyone. I will post more as I know more.
Margaret
“KEEP KICKIN’ THAT cancer”That darn stubborn man that I’m married too took another tumble yesterday. Trying to straighten a rug on the floor of all things, while he was holding a glass of V8 (RED) juice. He fell backwards and of course got the red juice all over the white (now pink in three spots) carpet. I’ll keep working on trying to get that stain out. He hit his head on one of the kitchen chairs and lucky him did not break any bones!
And as for Aurora Home Health Care, I don’t care if they NEVER come to our house again. He was on IV Antibotics until tuesday of last week when the infectious disease doctor switched him to oral antibotics. Home Health Care was supposed to come out and draw labs that day to get a ‘trough’ level for the antibotic he was on. We figured they’d come out and take out the line going into his port. They never showed…so yesterday I had Tom call them to see if they were coming out to pull the line and we found out today that they’d discharged him from Home Health Care and they stated that they could not come out and pull the line. So, since the line has been unused for 7 days, we called his doc and he sent an order down to where he gets blood transfusions when he needs them and we had to drive about 30 miles round trip to get the line pulled. Needless to say I was not a happy camper. I called home health car and asked a few questions such as before you ‘discharge’ someone who you know was getting iv antibotics via his port – wouldn’t you first do a home visit and pull the line? Their answer “Yes”…they still have some questions to answer about that one. After the mistakes they made the first time we used them and now this little boo-boo that could have resulted in a blood clot or worse yet another infection…that agency will never come here again and I’m not done with them yet!
Go with God and let’s KEEP KICKIN’ THAT cancer.
Margaret
Anp:
It could also be high ammonia levels in the brain. My husband Tom just spent three days in the hospital because he was doing some strange things and talking strange as well. He was smoking non existent cigarettes then dropping them and could not find them (He was not smoking). Then he wanted to go on the computer and after I got the laptop up and running he had no idea what to do or how to log in. I got him logged in and he sat there staring at it like he had no idea what it was. I got him to the doc’s office and he started doing and saying the strangest things so the doc got to see first hand what was going on. He was admitted, and yes, his ammonia levels in the brain were too high and he had a severe liver infection.Ammonia levels in the brain cause confusion, dis-oreientation and just plan make you act weird. The only way to get rid of the high ammonia levels in the brain is to put you on something that will make you go potty (#2) They want to to have loose bowel movements, but not watery and they put Tom on 30 mg of Generlac 2x a day and within 3 days he as back to normal with his ammonia levels.
Talke to your Dad’s doc, sounds like some blood work may be in order.
Go with God and KEEP KICKIN’ THAT cancer.
MargaretMy husband Tom had NO symptoms – however he was on a ‘statin’ pill for high cholesterol, therefore had his blood tests – inculding liver function tests done every three months.
In Jan ’08 everything was ‘normal’. In March ’08 his Alk Phophsate level was 10x above normal. The stopped the ‘statin’ drug immediately, then changed is diet to only green vegetables, then another type diet and wanted him to comes in every week for blood tests.
After three weeks of this nonsensce, I took him to a civilian facility in our home town with the blood work and immediately he was scheduled for an ERCP and they found the cancer in the left lobe of the liver. After walking our daughter down the Isle for her May 17, 2008 wedding, his left liver resection was scheduled for June 16th 2008. Three weeks in the hospital, no chemo no radiation because they had gotten clean margins.
18 months later he turned Jaundiced. He underwent getting a drain tube inserted into his liver because his bilirubin was at 24,800 which is why he was turning yellow. The new tumor is inoperable because it’s wrapped aroung the hepatic artery. He was given 6 months and told that radiation / chemo would not help. We sought 2nd, 3rd and 4th opinoins, and although they all agreed that it was inoperable, the other opinoins all agree that radiation / chemo could help.
He underwent 28 rounds of chemo, oral chemo (xeloda) then IV chemo (Gemzar and Cisplation) and he is still here some 20 months later.
The only reason that they found Tom’s CC when they did was because of the liver function tests that he as having done every 3 months by his Veteran primary care physician.
Hope this helps!
Margaret
Lyn:
When my husband Tom had his re-occurance with an inoperable tumor – his ‘then’ onconogist told us that chemo or radiation would not help and that he had 6 months at the most.
I would not accept that answer and we got 2nd, 3rd and 4th opinoins. Although they all agreed that the new tumor was inoperable because it involved the hepatic artery – they all felt that radiation and / or chemo could help.
Tom underwett 28 rounds of radiation, then started oral chemo (Xleoda) and later when through IV Chemo (Gezmar and Cisplation) The IV chemo was because a radiologist mis-read a scan and said there was a tumor (Mass) by his bladder in the pelvic region. After about 5 rounds of IV chemo, they discontinued the chemo.
Since that 6 months ‘death sentence’ Tom is still here with me. Some 20 months later. My advice, get another opinoin and find someone willing to take a chance on radiation. It may give your Dad a longer time to be with his family. Even at the onset before Tom started on radiation they told us that they could not guarentee the outcome…but so far we are vey happy with results…anything was better than 6 months.
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
This post brings to mind all the medications that have been prescribed for Tom in the recent months. Well over a thousand dollars then after two or three days the doctor calls and says to ‘discontinue’ them cause he does not have what I thought he had! So there we sit with meds that can’t be used. And they are generally not cheap medications. And since our $4,800 deductible just started over on 7/1/2011 that means it all came out of my pocket!
I don’t know of any ‘place’ that would accept unused meds, unless they are not opened. Possibly a nursing home, or a local free clinic. We are lucky in the respect that we do have some family members that are on some of the same drugs that Tom has been prescribed, so we have been able to help them out by giving some away to that family member, but with the rest we dispose of them.
Margaret
Almost forgot, yesterday evening I got out Tom’s wheelchair and I took him for a walk around the neighborhood and tonight when my neighbor and I walked, he wanted to come with. So I got a little bit more exercise by pushing him in his wheelchair for our two mile walk! At one point he asked why we were walking so fast!!!! (That’s how we do 2 miles in about 20 minutes)
HUGS
MargaretThanks everyone! Today was an even better day! He stayed awake all day and even wanted to go out for a quick bite to eat. Ate 1/2 of his bowl of soup and all but two bites of his sandwich!
I think the crisis is over…but he still has antibotics to take for the next 9 days..and I WILL be flushing his tube EVERY day!!! I still find it hard to believe that some people with a drain tube into their liver don’t ever flush it…that is scary to me because once those holes in that tube get plugged with dried up bile, that is when the ‘bugs’ can become active and that will put the person down.
Sometimes being a caregiver seems like a ‘thankless’ job, but when I hear the doctors and nurses commenting that when Tom comes in for his tube exchanges, they know that when that bandage comes off the wound site is going to be clean and his skin is going to be perfect with no sores or breakdown of the skin under that bandage. They always tell him how lucky he is to have a wife who cares enough to keep his wound and skin so clean! Comments like that mean the world to a caregiver and helps to make it all worthwhile, cause I feel that I am really ‘making a difference’ to help keep Tom as healthy as I can, one bandage at a time!
Go with God and KEEP KICKIN’ THAT cancer
Margaret
