mlepp0416
Forum Replies Created
-
Posts
-
Lainy and T:
We will be thinking of both of you as we watch the Green Bay Packers today! It sounds like T is in good hands with Hospice and with family and friends visiting. Do you have a special support person for yoursef Lainy? I hope so because you will need someone. I know that one day I will be in the same position and my heart goes out to you.
Go with God.
MargaretKmwmsm:
This brings back so many memories. One can only imagine how a cancer diagnosis makes your loved one feel. As my husband’s caregiver, I know that it was a hard slap up along side of my head, and I cannot even begin to think how it makes my husband feel.
As Tom’s caregiver all I can do is to be supportive and let him know that I am there for him. There will be times when your husband will seem to be pushing you away, and that is OK. Just let him know that you are there for him when he needs you.
Do all the research that you can on this cancer, and keep detailed notes of questions that you want to ask the doctors. Be involved in your husband’s care. He will have good days and bad days. So take advantage of those good days and do things with the children. Build those memories.
Your situation is a bit different as you have young children. Tom is 63 and I am 58. All of our children are grown with families of their own. Our littlest grandson is now 13 months old. He was only 2 lbs 9 ozs when he was born. He is named after his Papa, and the sad thing is that he will probably not be able to go fishing or to do things with his Papa.
Our dreams of growing old together will most likely not happen because this cancer will take him before his time. However, with that being said, Tom was given a 6 month prognosis, 10 months ago! We continue each day thankful that we have another day together.
I just asked Tom if he had any advice for you and your husband. He said,
“Lean on your wife, she is there for you like no one else will be. I strongly advise that after your surgery, even if they tell you that you have clean margins, INSIST on at least a few rounds of chemo. If I would have had chemo, I may not have presented with another (inoperable) tumor. You will have good days and bad days, take advantage of the good days. Tell your family and friends to come and visit, even if only for an hour. Make sure that your wife has time to herself, even if it’s only to get out for an hour. Turn to your faith and always try to be positive!”We are so sorry that you and your husband are on this journey. You will encounter a lot of twists and turns, ups and downs. It is an emotional journey that no one should have to travel.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret and Tom (My husband and Cholangiocarcinoma)
All:
Our trip to Flordia was AWESOME. Only a few rain showers, and no Hurricanes!
Most of the time we were there it was sunny and warm. We saw a lot of sights!
We walked in the ocean, collected shells, watched the sunset over the ocean. Tom gained 8 pounds while we were there! This in itself was worth the trip.
We went to Bubba Gumps and had Crab Legs, and to Joe’s Crab Shack and had Crab Legs. Tom was ‘under the weather’ for only about 1/2 day while we were there, so I put him to bed and he slept. We went to the sponge docks and got a neat sponge and some air plants. Went to the Greek Bakery and had an awesome sugar high with the pasteries we ate.
All in all it was VERY GOOD THERAPY for Tom.
Love to all,
Margaret and TomAll:
Only one more day of work and on Friday, Tom and I fly out to Flordia for a much needed vacation!It will be great to see Tom’s niece again as it’s been a year since we saw her last. Hopefully the hurricane’s (there are three approaching the coast) will all veer back out into the ocean! With my luck, that won’t be a case. Hummm, husband gets rare cancer, has successful liver resection, gets a re-occurance (1% of successful resection patients do) so why not experience a hurricane on the first time I ever go to Flordia? Like I said that will be my luck!
Hope everyone continues to do well in the fight with CC and I will check back on everyone when we return on the 9th!
Go with God and KEEP KICKIN’ THAT cancer (now beginning the 10 month of life after Tom’s 6 month terminal diagnosis)
Heather:
Never give up! In my husband Tom’s case, they did a resection where they removed about 80% of his liver. The liver does heal and regenerate. His doc’s told him no chemo and no radiation because they had clear margins. 18 months later he presented with jaundice and they found a new tumor. His doc said 6 months and chemo and radiation would not help. Now, here we are 9 months later (after radiation and chemo) and we are still going strong (with a few bumps and twists and turns) but we are hoping for another 6 months then another and another. NO ONE has a expiration date stamped on their butt! So take a deep breath, blow it out slowly, then take it one day at a time. Build those memories and hold your loved one close.Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
Roni: Let me join the others in welcoming you to this site. You are right, there is not a lot out on the internet regarding this cancer. Like you prior to my now 63 year old husband being diagnosed with this cancer, I knew nothing about it. Now I think I could write a book on it!
Tell your father that NO ONE has an expiration date stamped on their butt, or on the bottoms of their feet. My husband Tom was given a 6 month terminal diagnosis, 9 months ago! I feel that attitude and prayers and being on top of how the person with CC is feeling on a day to day basis has a lot to do with how long someone lives with this cancer. If a doctor tells you 6 months and you do nothing except figure that you will be gone in 6 months, then that may be true. But if your attitude is such that you WANT to be here in 9 months, and if you have people helping you to be strong and think positive and you are getting the medical treatment that you need, being careful to seek out that medical attention whenever something is ‘not feeling right’ or ‘not looking right’ and not taking ‘NO’ for an answer….then I think that CC patients can many times outlive such a dire prediction.
Tom and I are now in his 9th month of life, with no end in sight. However, with that being said, we are diligent in seeking answers, second and third opinoins, etc and staying on top of his medical issues.
Prayers are coming your dad’s way from Wisconsin.
Go with GOD and KEEP KICKIN’ THAT cancer.
Margaret and Tom (My husband and Cholangiocarcinoma)
Lainy:
Too funny! Hopefully the Packers will give Teddy some good quality Football time this year.
Only 5 hours since the tube exchange and Tom is like a new man! He’s talkative, cracking jokes, etc….just more like the man I fell in love with and married!
You are right, we are KICKIN’ IT and I for one plan on doing it for some time yet. Tom is down to 111 pounds now, but I’ve got some ideas up my sleeve to get some weight back on him. No matter what, he’s going to be eating something every two hours during the day. Now that I’m working at home, I can monitor him more closely….
Love, kisses and hugs.Margaret
All:
The tube exchange went very well. Funny, everyone knows Tom by name! We should get some frequent flyer miles! Doc said that he should have been there last week for the tube exchange. It was plugged up tight! Therefore all the bile was backing up into his system, which explains the yellow eyes and the yellow skin tone. Also explains the pain in the liver….the new tube will decompress the liver and the pain and the yellow will go away.
Thanks for all your thoughts and prayers. Like I said before, I could not travel this road without all of YOU!
Go with GOD and KEEP KICKIN’ THAT cancer.
Margaret & Tom
Dear Friends:
Tom goes in tomorrow for ‘another’ tube exchange. He’s been running a low grade temp, the bile is getting thick (no bad smell yet) and he’s turning yellow again, the whites of his eyes are no longer white and now his belly is turning yellow. All signs indicating that the tube is plugged up. So BayCare Aurora here we come. Tomorrow at 1pm he has to be there. Once that is done, hopefully things will settle down and he’ll return to being his ‘normal’ color.
Prayers are gratefully accepted, hoping all goes well.
Go with God and KEEP KICKIN’ THAT cancer.
Love,
Margaret and TomLainy and Teddy:
I’m certain that now that the choice for Hospice has been made that they will be an immense help to both of you, both physically and spiritually.
Teddy: Thank you for all the inspiration you have given to so many of our CC patients and their caregivers. You have given Tom hope. Thank you for lighting candles at mass for Tom and so many others. You have a very big, kind heart and it does not go un-noticed. Our thoughts and prayers are with you during your journey.
Hugs to you both!
Margaret and TomHi John:
Wow, reading your introduction made me really stop and think. My husband Tom (My Husband and Cholangiocarcinoma) has been on Xeloda and suddenly he too has been diagnosed now with Rheumatoid Arthritis. I’m beginning to wonder if that is a side effect of the Xeloda? Tom also developed the joint ache and also the joint swelling. Sometimes it seems that the ‘cure’ is worse than the disease.
All his docs have given him so far for the pain associated with the Rheumatoid has been pain killers. And he takes Advil for the swelling but to date, no real relief from the swelling. In fact, he just had to go to the fire station to get his wedding ring cut off his finger because the knuckle was so swollen that the ring was cutting off the blood suppy and we simply could not get the ring off!
Tom is diabetic so Predisone causes his blood sugars to be very elevated so that is not an option for him, but perhaps if he could take that every other day maybe it would help him somewhat with the swelling. We’ll have to query his doctor on that!
Has anyone else experienced Rheumatoid Arthritis appearing after being on Xeloda?
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Kristin:
I think with the tegaderm film you should be able to soak in the tub as the tegaderm will keep the site dry. The water would not hurt the tube or the bag. The pool might be a different story because of the chemicals that are used to keep the water clean, not sure how that would affect the tube and bag. But hey if you have the tegaderm film on I don’t see that it would hurt anything as long as you aren’t in the pool for hours!
You could always run through (well, maybe walk through) the sprinkler!
I will get some more of the tegaderms out to you next week!
Hugs,
Margaret
Kim:
I agree with Lainy. If at all possible, take the trip with your mom. My husband Tom as CC and has lost a lot of weight and is sick most of the time but we just made plans for a month out to fly to Flordia to visit his niece. We are making those memories (God willing) and so should you and your mom.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
