mlepp0416
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Acuevas:
Hang in there! Prayers are coming your mom’s way from Wisconsin. Please keep us posted on your mom. My husband was in the hospital for three weeks after his liver resection. Just recently his kidneys and liver were not doing so well because of an infection in the liver but with heavy IV Antibotics he is on the mend.Go with God…
MargaretLibeco: Welcome to the site that no one, including me, really wants to join! Feel freel to post your thoughts, concerns, issues, etc. as you will get lots of feedback.
As my husbands caretaker, this site has given me a lot of insight, and compassion when I feel the need to rant or rave about the care or issues that my husband is undergoing.
At your fathers age, I would agree with just doing pallative care. My husband Tom has been fighting this cancer for almost three years, but I feel that he is getting close to the point where he’s going to say “enough is enough”, but that is OK. Not that I want to be a widow anytime soon, but I see firsthand what this cancer is doing to his body, and I do not want him to suffer. I’ve given him my endorsement and anytime that he feels the need to quit, I’m OK with his decision. Only he knows how his body is feeling.
And remember, no one has an expiration date stamped on their butt. Tom was given 6 months to live…..12 1/2 months ago! Tom was diagnosed at age 61, he is now 63. We are hoping to make it to our 10th wedding anniversary in Feb. 2011. Otherwise I have a bottle of wine that I’ve been saving for almost 10 years that I’ll have to drink all by myself! If he makes it to our anniversary, he’ll only be having a sip or two though.
Enjoy whatever time your dad has left here on earth. When he is having a good day, do something special with him. When he is having a bad day, just let him know that you love him. Watch TV or sit by his side and hold his hand. Get some pictures or videos of him. Build those memories!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Lainy and Family: Words cannot expresss…..my heart, thoughts and prayers are with you all. T was an inspiration to all of us on this board. You are correct, he is no longer suffering and has started a new journey. One where there is no pain, no doctors, no tests, no chemo, only peace.
RIP Teddy. Go with God. Godspeed. We all love you.
HUGS,
Margaret & TomOK Mamma Bear! You’ll get that Hospice facility straightened out! Hopefully today once you have rested! You are so much like me when it comes to Tom! But Teddy needs you as his Advocate now more than ever!
I’m hoping your next post lets us know that T is being cared for in a more positive way!
Go with God. BIG HUGS!!!!
Margaret
Shadow: I’ve been my husbands caregiver for almost three years.
My advice to you would be to certainly seek a second opinoin.
My husband did have a left lobe resection in June ’08 but had a re-occurance of the cancer in Nov. ’09, and that new tumor is inoperable. In Dec. ’09 the oncologist gave him 6 months “At the most”…..and told him that Chemo/radiation was not an option…well, here we are in Dec. ’10 and he is still here.
No one has an expiration date stamped on their butt! All the doctors can do is ‘guess’ at what time one has left. Many doc’s have never encountered a case of CC.
We got 2nd and 3rd opinoins they both disagreed with the first oncologist.
Radiation killed the new tumor and he is now on IV Chemo. The first round was oral chemo.
My advice would be to do all the research you can on CC. Read the posts on this board and write down all the questions you can think of. Seek those 2nd and 3rd opinoins. Try to find an oncologist who is familiar with CC. Never take no for an answer, instead ask What else can they try.
Spend time with your Mom. When she is having a good day, ENJOY it. When she is having a bad day, just be with her and hold her hand if nothing else. Take lots of pictures and videos (You will be glad that you did). Watch TV with her, or read a good book to her!
Please keep us posted on your mom. Feel free to post your thoughts and feelings on this site, as many of us do! Ask for advice, and others will give it freely.
Welcome to the site that no one, myself included, really wants to join. But, trust me, you will be glad that you did!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Andie: I can equate what you are going through right now. For Tom my husband, when the local doctors were unable to get an internal stent into his liver so he could get rid of the drain bag, we made a trip to Mayo Clinic in Rochester, in the hopes that they would be able to internalize the stent. After two attempts, failed both times, although we were disappointed, our thought was “At least we tried!”
As I told Tom’s son tonight, “We have consulted with the best (Mayo Clinic) and although even though they failed to get the stent in, I’m glad that we went there, because otherwise, for the rest of my life, I would have been wondering if I did enough and would have wondered ‘what if’. But now I know in my heart and mind that we did all that we could do”
So don’t beat yourself up on this. And remember that no one has an expiration date stamped on their butt! Only God knows for certain when that time will come. Case in point, Tom’s oncologist told him in December ’09 that he would give him 6 months at the most! And here we are 12 months later, still fighting, so he has lived a full 6 months PAST what that oncologist predicted. Has it been a rough road? Yes. Do we reget these additional 6 months? No.
So take it one day at a time, spend lots of time with your father. Take lots of pictures. Let him know that you love him. Make the most of his good days, as he will have good days. On the days that he is not having a good day, just be there for him. Hold his hand, read to him, watch a movie with him. Sit by his side, and most important, tell him that you love him!
Go with God, and KEEP KICKIN’ THAT cancer!
Margaret
Lainy and Teddy:
Teddy sounds just like my Tom! He’s not concerned for himself and he’s making his journey, he’s concerned for the one’s he will be leaving behind! Like Teddy, Tom worries about how I will do the things around the house like snow blowing in the winter, keeping the house in order, washing clothes, etc. I think he does not realize that I have been doing that stuff all along these past three years.
And like Teddy, Tom has already stated that he now wants to go inpatient hospice when that time comes cause he thinks it’s not fair to me to want to be at home when the time comes.
I wish I could give you both a great big HUG right now. So consider yourself to be ‘cyber hugged’!
I’m certain that Teddy’s journey will be peaceful, and you are a very strong person so you will be AOK! Yes, sadness with prevail, but you have some awesome memories to help you!
Go with God. HUGS!!!
Margaret
So here is the latest…Home Health care is coming out tonight at 6pm to show me (really? me?) how to access Tom’s port to administer 3 different antibotics that have to be done 3 times a day! One of the drugs takes 4 hours to administer. I guess he will be hooked up to an IV continously for the next two weeks.
I can’t believe that the poor man actually trusts me (really?) to be able to do this! Ok, I am WOMAN, hear me roar!!! I can so do this. And I really think that I need to change careers and become a RN! Except that at almost 59 years of age, all I really want to do is look forward to retirement!!!!
Scared? Scared as hell, but really it should be no different than three years ago when I did all of his IV antibotics through the PICC line he had in his arm! Right?
And the fun never stops!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Thanks Janet but it’s already ordered and our insurance will cover it at 100% and I imagine it will be discounted quite heavily.
Tom’s chemo has been cancelled because he does NOT HAVE TUMORS in the liver, only lesions which are caused by infections. And the MASS is GONE! Me thinks I will be having a chat with the head of the hospital and will be getting some answers…I think I will be requesting a refund for my insurance company because they made him go though un-necessary treatments for tumors. Hummm, can you tell that I’m boiling mad at this point? Maybe I should not go to the hospital today????
And I’m not kidding about the price of that pillow! It’s for him to sit on so his bedsore can heal…..unbelievable eh?
Margaret
Update on Tom. He did have high ammonia levels but they are coming down as they are giving him something to make him have loose stools. When the liver is not functioning correctly it cannot filter out the ammonia (which can attack the brain and is very bad) so the only other way to get rid of it is to ‘poop’ it out!
Yesterday his kidney function was a zero, and today it’s back to normal so that is a good thing.
His bile drain tube is being exchanged today – the bile started growing something, so the infection is in the liver and they will have him on the correct antibotics later today once they figure out what ones will kill the infection.
He will most likely be released tomorrow……and the doc says that the 5 new ‘tumors’ that were found in the liver are not really tumors, but they are lesions caused by infection……so did he have chemo when it was not really necessary???? The infectious disease team will be putting their heads together to see what long term antibotic they can get him on so that he doesn’t keep getting the infections. The liver is becoming ‘used’ to the levaquin and that is no longer working.
The wound care team said they cannot do anything for his bed sore on his tail bone and that they can’t heal it. I WILL GET IT TO HEAL myself! Even if he has to have his bottom exposed to the air every hour on the hour! We are getting a ROHO PILLOW for him to sit on. At a cost of $430.00. REALLY? Are you kidding me. $430 for a pillow? That darn thing better work wonders!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Thanks for the continued support! Just found out that his white blood count is over 30,000 (under 10,000 is considered normal). He’s had two tranfusions of red blood cells and is on constant IV Antibotics. I’m working today and he is patiently waiting for me to come…his words “I need my wife”…aww how sweet!
Hugs,
MargaretClaude1: Oh how I can relate to this! I am working full time, and also caring for my husband who has been on this CC Journey for almost 3 years. It is a struggle for certain. I wish I could afford to quit my job and care for him, but we do need to eat!
My husband is in the hospital – so I’m getting a small break, till he comes home.
Your feeling of wanting to be with your Dad are normal! And of course so are your desires to be employed!
Just keep looking for a job and until that happens…..make the most of your time with your dad!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Tom is back in the hospital. White blood count elevated and they are growing cultures to pinpoint the source of the infection. I suspect the drain in the liver. The Wound Team will be checking on the bedsore he has on his tail bone and how to treat that. Doc said I was doing good, cause it’s clean and not infected! And I want it to stay that way so I suggested that the wound team be consulted and give me some ideas on how best to continue treating it. Probably a Waffle Roll Pillow will be prescribed. That way he won’t have so much ‘pressure’ on his tail bone when he sits. He will be haveing an Ultrasound tomorrow and parentheses to drain the fluid off his abdomen.
He had a transfusion going when I left the hospital tonight, his red blood count was down to 7. Generally he gets a transfusion when it’s at a 9.
Once they get him on the correct antibotics and he’ll start feeling better!
Prayers are gratefully accepted. Lets keep KICKIN’ that cancer!
Oh, the best thing is that the CTScan revealed that the ‘mass’ in his pelvic area is GONE! Now I ask, was the previous CTScan read incorrectly? Was it read by the same radiologist who said his gall bladder was grossly intact with no abnormalities? (this was 2 years AFTER the gall bladder was REMOVED) Maybe this radiologist needs to go back to school?
I will be so upset if it was ‘mis-read’! I’ll be asking some questions tomorrow!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
