mlepp0416
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Lainy: When Tom was in the VA Hospital after his initial Liver Resection they had him on Morphine and …. he started seeing things too! Except he saw bugs, hundreds of bugs crawling all around the room! He was so serious and could not believe that I could not see them. I told him that if he had to see ‘something’ why did it have to be bugs! Why not pretty naked ladies or something.
You need to mention this to his doctor! As soon as I told the nursing staff that Tom was seeing things like bugs crawling down the walls, they immediately took him off morphine and gave him a different type of pain killer. Evidently that is a side effect of morphine. I would certainly let his doctor know, as you don’t want Teddy to do something during one of these episodes where he might end up hurting himself or hurting you! (or all the other people that are in the bedroom!)
Prayers are coming Teddy’s way! (Call his doc!!!)
Hugs,
MargaretLainy: LOL, no, not Lambeau field, but it does ‘overlook’ the Bay and has an awesome view (not that we will be ‘seeing’ that view in the ever after though) and it’s a bit higher up than what we wanted, but we’ll never have to worry about it flooding!
Tina: Tom was originally on Xeloda so he cannot take that one again because cancer ‘recognizes’ the chemo after you have been on it and it would not be effective. The battle with CC is a tough one and Tom has been fighting a good fight for almost 3 years. You can read about his journey under “My husband and Cholangiocarcinoma” This thread is ‘part 2’…
Margaret
All:
Preparing for the worst and hoping for the best. We are purchasing a head to head crypt tonight for Tom and I. Found a fantastic deal that I just could not pass up! Most crypts in the Green Bay area go for about $12,000+ for a double, but found one that a divorced couple are selling for the amazing low amount of $3,000, and they are willing to pay the transfer fee and 1/2 the cost of removing their names and polishing the marble face on the crypt.
I should go buy a lottery ticket!
Here’s to hoping that we will not have to use that Crypt at any time in the near future!
Hugs,
Margaret
Kris: So sorry that you are experiencing all these problems, prayers are coming your way from Wisconsin. I hope they figure it out soon for your sake. Rattle some cages there at that hospital!!!
Go with God and KEEP KICKIN’ THAT cancer! You go girl!
Hugs,
MargaretTlsinftl:
My husband Tom just had a ‘power port’ installed in his upper right chest about 2 weeks ago. It is the best thing ever. The last time he was at the ER it took them 7 tries to get an IV started. Poor man looked like a pincushion! Not to mention that he was upset, hurting and eventually angry about being poked so many times.Now that he has the power port, they do everything via the port. Blood draws, IV chemo, etc. etc…. No more bumbling RN’s trying to start IV’s in his arms. Eventually Ben’s will not have good veins and will encounter bumbling RN’s that will have a hard time starting IV’s….
Many people resist a port but in the long run it can save Ben a lot of pokes, bruises, bad veins, etc.
My husband Tom wishes that they would have done this two years ago instead of two weeks ago.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Lainy: I think we need to see a picture of Teddy so we can all vote on his ‘cuteness’! Hang in there lady, I know you will and prayers are still coming Teddy’s way from Wisconsin.
Hugs,
Margaret and TomJulia: It’s been awhile since Tom has had an internal stent, however I do remember that when he had them, they tended to get ‘clogged’ and needed to be changed out with a new one every 6 – 8 weeks. Perhaps a visit or call to the doctor is in order?
Margaret
Lainy you are just TOO FUNNY! I certainly hope that Teddy knows what a fantastic lady he married! (I’m certain that he does!) I only hope that I can stay as strong as you are when/if this time comes for my Tom.
I, so far, have been able to stay strong by dealing with the facts of his illness and being there to deal with each crisis that comes along. About the only time that I ‘almost’ loose it is when the youngest daughter starts sobbing on the phone because she is so close to her stepfather that she just cannot bear the thought of him not being here anymore. Then I find it difficult to stay strong. But then I gently remind her of all the good things we have done as a family in the last 2 1/2 years since he was diagnosed and that makes me strong again.
I’m with you on the ‘still so damn cute!” (but Tom hates it when I say he is cute, he thinks ‘cute’ is for girls, and I should say ‘handsome’)
I am keeping both you and Teddy in my prayers and hope Teddy has a WONDERFUL 78th birthday!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Kevin and Family:
Words cannot express – I am so very sorry for your loss. Kristin was my inspiration. Yes, she is at peace now. I am so happy that her ashes will be spread in Wisconsin as I know she had many happy memories here in Wisconsin.Go with God Kevin, and please come back to this site often, as it may help with your grieving and with your healing.
I will never forget Kristin and I’m happy that I was able to do something special for her during the last few months of her life, even if it was something so simple as sending her Tegaderm Films for covering her bandage. I know that made her trip to Wisconsin to see her Grandmother more comfortable for her.
Hugs,
Margaret
All:
Tom is having a hard time with this new chemo. They ‘deferred’ him for two weeks now because his red blood count was too low. Yesterday he had two blood tranfusions (which took almost 7 hours!) Can you believe that?
His Onc was a bit upset when he discussed ‘quitting’ with her. She said “You’re strong and we can help you. I would tell you if I thought there was nothing else we could do”…..
So on the UP side, he has decided to not quit chemo just yet but will continue at least until the next scan, and then will decide.
Love to all,
Go with God and KEEP KICKIN’ THAT cancer.Margaret and Tom
Harmony: Sweet words! As a caregiver to my husband, Thomas – I really appreciate your words!
Thank You!
MargaretMy thought for you Dianne is that it NEVER hurts to have a second opinoin – if you have any doubts and fears, PLEASE schedule a visit with an Oncologist! Even if the surgeon feels that he got all the tumor and the nodes were ‘clean’ it would not hurt to seek an oncologist’ opinoin.
My husband Tom also had ‘clean margins’ and presented 18 months later with a new inoperable tumor in one of his remaining bile ducts. His new oncologist ‘team’ are now saying that if he’d had chemo after his resection in 2008, he may not be in the circumstances he is in today. You can read about his ‘journey’ under my login name….(My husband and Cholangiocarcinoma, and My husband and Cholangiocarcinoma – Part 2)
I would get all your records from the surgeon and run (not walk) to an oncologist for a 2nd opinoin! Also, look for someone who has experience with CC (which may be hard to find) and have that oncologist review your records!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Kevin, Oh my! My heart goes out to you! Is this the same Kirstin that I have been sending Tegaderm Film to? Who lives in Berea, Kentucky?
I just got an email from her on Sept. 30th, where she talked about her husband.
My heart goes out to you Kevin, and if anybody can bounce back it would be Kristin.
Even though we caregivers try to prepare ourselves for this moment, it seems that our preparations are never enough. I know that my husband Tom is facing the very same thing eventually and it breaks my heart.
During my fall housecleaning just recently, I came across a bottle of wine that we had received from our wedding day. We actually had gotten two and we drank one on our first anniversary, and I saved the other for us to drink on our 10th anniversary. When I saw that bottle of wine, I started crying because it does not look like we will make it to our 10th wedding anniversary. My first thought was “Maybe we should drink it now”, but decided that maybe, just maybe, Tom WILL be here to celebrate those 10 years. But in view of his recent CTScan with more tumors and a mass in the pelvic area, and him starting aggressive IV Chemotherapy, my head knows that he may not be here, but my heart thinks he will be here.
Please keep us posted on Kristin and if she does pass, please stay with the Cholangiocarcinoma site for your grieving process and beyond. You will be able to share your insight with other caregivers and CC patients.
Kristin is amazing and has helped me (as a caregiver) get through some very low times in my life. I will be saying additional prayers for Kristin.
Hugs and Go with God,
Margaret and TomThanks Marion and Lainy! The boxing gloves are ON! Tom is off to his first IV Chemo round. I’m hoping he doesn’t get too sick from the chemo. His attitude is VERY POSITIVE which is a good thing! He says that his work on this earth is not done yet so he wants to hang around for a while yet.
Margaret
Hi Bob!
It’s is refreshing to read your post. I agree with you. You have to keep a good attitude and NOT give up. Even with all that is going on with my husband Tom, his successful resection, a tumor reoccurance, inoperable and with being given 6 months to live, after radiation and oral chemo, now presenting with new tumors and a large mass, ascites – he is still willing to fight and just had a port installed today and begins IV Chemo tomorrow….he’s still trying to KICK that cancer! And tomorrow we start the 11th month of life since his 6 month prognosis! YEAH!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
