Re: Update on my dad!

Nikki... in order to "ramp" up the digestive track, clear liquids will be followed by light and easy to digest food.  The nurses will listen for gurgling sounds (gas) in your Dad's abdomen.  In fact, flatulence will continue to be a focus for a long time to come.  In fact, we have numerous (at times hilarious to read) threads on the subject, but it is an important issue for this type of surgery.  Each day your Dad will accomplish a bit more and before you know it, he will be sitting in his chair.  At present he is in the perfect place for recuperation, as the nurses watch closely over him and are ready to address anything that may come up.
As the others have mentioned, the recuperation time varies for each individual; just know that each day is a step toward complete recuperation.
Tons of good wishes are heading your way,
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on my dad!

Nikki,

Great news about your dad.  Dr. Kato is a saint.  My mom was resected on march 5 and stayed in the hospital about 12 days post op.  it is a slow recovery but she is progressing.   It has now been 4 1/2 weeks.  She went to the mall with me today for the first time.  She was exhausted when we returned.  These are huge surgeries and it takes time to heal.  The staff was amazing at cumc.   Best of luck with dad.  He is lucky to have you!

Re: Update on my dad!

Thank you ALL so so much for all of your responses!  I love posting to this board because of the support and great feedback I receive from all of you! It has officially been 2 weeks since the day of his surgery.  He would have been discharged, however, his incision is still infected (which is common).  Today he has to walk A LOT - Dr.'s orders.  His pancreas is still leaking so he cannot eat solids until that is cleared up.  My aunt is with him now.  Hoping and praying that he can come home Friday as we have a pilot lined up from Angel Flights! 

Laura - thanks for giving me an update about your mom...obviously hearing from someone that has also had surgery with Dr. Kato is invaluable.  They watch over him at the NY Pres like a hawk.  It's a great hospital.  I'm happy to hear your mom is progressing well...that is great news!

Lainy - I took your advice and told him how large this surgery is and that he has to give himself some credit! 

Taking one day at a time...focusing on the positive - that he was lucky enough to be a candidate for surgery and that we found Dr. Kato through this amazing web-site.  I don't believe anyone else could have accomplished what Dr. Kato and his team did for my dad.  He is truly gifted from God and the most humble man I have ever met.

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Update on my dad!

Dear Nikki, thanks so much for the good update on your Dad. The infections seem to take forever to heal, I think partly because the worst is over and after surgery  people are anxious to go home and up pops an infection. Teddy had 2 of them and if I am correct his were called fistulas. The big word in healing from CC Surgery is PATIENCE. I sure wish for Dad to go home Friday as there is no place like home!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on my dad!

Thanks for the latest update on your dad Nikki. Hoping that this infection will clear up very soon so that your dad can get home, and I know how much he will be looking forward to that! I know that it might seem slow to you and him, but it sounds to me like your dad is making great progress here!

My fingers will be crossed for a Friday flight home for him!!

Best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on my dad!

Hello!

I wanted to give a little update on my dad's progress.  We finally travelled back to Boston from NYC on 4/19.  We met with Dr. Kato that day to go over all of his biopsy results...Dr. Kato informed us that exceptionally clean margins were obtained with NO lymph node involvement (after removing 19 all together)!  Dr. Kato said that for my dad's stage, he couldn't have asked for better results.  He was thrilled as were we!  My dad is still recovering at home.  His biggest challege remains the enormous incision.  Unfortunately, the incision got infected a few days after surgery, so they had to remove the staples which left a huge open wound.  He is starting to eat a little bit more too which is also a major challege after a Whipple.  We will be going to a follow up appointment at Dana Farber to discuss follow up chemo on 5/14.  We are so thankful for each and every day and want to remind everyone that there is hope and never to take no for an answer! 

Nikki

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Update on my dad!

Nikki, YEA!!!! for such a fabulous report. Doesn't get any better than this. Again patience is the #1 tool. My husband had his scar open too, I think it's a fistula. It seems to take forever to heal but it does go with this territory. But it's really all the best news and we have a new Super Hero! Thanks so much for the update.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on my dad!

Hi Nikki,

Thanks so much for sharing your dads great news with us all!! It is brilliant news indeed, and like Lainy says, it doesn't get any better than that! My fingers are crossed for the rest of your dads recovery to go smoothly and let us know how he gets on with things.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on my dad!

Hi Nikki,

I am so happy to hear the great news. It sounds as though your Dad is doing great!! Lauren's incision from her surgery the end of March did not get infected, but hers opened right at the bottom of the breastbone. Her surgeon wasn't too worried about it and said it would heal eventually. Plus, she has a second surgery next week, so it would be silly to fix something that is going to be opened again. Eating has been the big challenge for Lauren as well. I hope your dad gets stronger and stronger each day and has an easy time if he has chemo. I am definitely on the same page as you when you say there is hope and never take no for an answer. Amen to that!!

Love and hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Update on my dad!

Hello CC Family!

Even though I don't have much to report, I wanted to give a quick update because I know how much it helps for other people reading the posts on this board to hear good news. 

My dad is closing in on 2 months post Whipple/Liver Resection and is doing remarkably well according to his wound nurse and his doctors at Dana Farber.  His wound only has about two inches to go before it is completely closed.  He will start his one cycle of chemo on July 25th.  His first CT scan is July 23rd (which he is already pre-stressing)!  His doctors at Dana Farber told him that he has so much to be thankful for and that he is exactly where he wanted to be when this whole rollercoaster started back in September of 2012.  They are very hopeful that he CT scan will be clean.  I know it will be too smile  He is gaining energy back and eating a lot more than he was.  He has his bad days too - nausea, cramping, exhaustion, anxiety - but like I said to him, he has more good days than bad.  He is going to start working again soon - he is a bartender/manager at our family owned Italian restaurant.  I think this will help get him back into the swing of life and will take his mind of the C word. 

I can't tell you how important positive thinking is. We are thankful for everyday and go out to the world with the attitude that we beat CC because we did and we will continue to do so! 

Nikki

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Update on my dad!

Nikki, I am thrilled to read your update today! Attitude is not everything, it is the ONLY thing! Got to get those Italians back to work where they love to be, I know. I am sure his CT Scan will be just fine as he is doing so well. My Teddy had a Whipple and it really takes awhile for he recovery, after all it is the largest surgery to the human body. You mention that Dad has nausea, cramping, exhaustion, anxiety and I am wondering if you have told the ONC. The only thing T had was tiredness. After a Whipple your digestive system is thrown for a loop and you have to be careful what you eat. Your tastes change too. T was a chocaholic  and couldn't stand sweets ever after. He couldn't even eat pasta for a long time. Can you imagine a Sicilian not having his red sauce? My only suggestion is to ask the ONC for something for what ails him. If he is in discomfort that interferes with his healing. Wishing you the best and can't wait to read about the good CT!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on my dad!

Thanks Lainy!  It's funny how their taste buds change as well as their reaction to foods they have been eating their whole lives!  I guess it takes a long time to figure out what works and what doesn't!  We talked to his ONC about his ailments and they did offer suggestions - talking to a therapist, a low dose anxiety medicine, seeing a nutritionist...he is on pain medication for the cramping, but luckily he has been able to decrease his dose overtime.  He hates taking any kind of medication at all!  Although they give him all this advice, it is only him that can make the decisions on how he wants to handle his ailments.  He can be stubborn and mostly I think because he doesn't want to come off as "weak".  I keep telling him how strong he is and that it's okay to need help.  The doctors said that a lot of the cramping is from his digestive tract healing and growing.  We hope that is the case!

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Update on my dad!

WHAT?  NO!  A stubborn Italian. One suggestion Nikki, have him graze on food all day rather then trying to digest a big meal. Also nothing too spicy or fried. I was so lucky as Teddy was so cooperative. I just have a feeling the nausea and some of the pain could be related to the way he is eating. Also walking is good. The ONC had told T to walk just to the end of the driveway first then like every couple of days increase his walk. That also helps with digestion. Not sure how you make the sauce but we always added baking soda at the end. It takes out all the acid from the tomatoes and sweetens the sauce. You can see the acid just foam up out of there. I ASK YOU WHERE ELSE IN THE WORLD CAN YOU TALK ABOUT CC AND GET COOKING HINTS AS WELL?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on my dad!

Nikki...thanks for sharing this fantastic news with us.  Congratulations.  The healing from this surgery will take time and digestive issues are part of the game.  But it will continue to improve with time.  Enzymes before each meal may prove to be beneficial.  Scan anxiety, as we call it, seems to come with the territory.  Please, let your Dad know that tons of positive wishes are heading his way.  Like you, I believe that he is looking at a clean scan.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on my dad!

First CT scan post surgery and it's CLEAN! CA-19 is normal! Best part of receiving the good news was seeing my dad's eyes well up with happy tears for the first time in almost a year smile He received his first gem/ox post surgery treatment...6 more to go! My dad is a walking miracle.

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Update on my dad!

YIPPEE for the Miracle Dad and his wonderful Daughter, Nikki. Your post brings music to my ears and heart! I am so happy for you and my wish is for the success to continue. YEA!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on my dad!

Oh!  I'm so happy to hear such great news!  Keep up the good luck and savor this moment! And thank you for sharing, Nikki!

Jeeyoung

Re: Update on my dad!

Yay great news Nikki!!! Just what we love to hear and I can just picture your dads eyes all welling up on hearing this! Hope you are all celebrating and looking forward to hearing more good news from you!

My best to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on my dad!

Great news Nikki!!  I know the feeling of getting good news after all of the news is bad leading up to it.  Please keep us updated.

Enjoy the good news.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Update on my dad!

Just another quick update...my dad could not handle the gem/ox combo, so he is now just doing 3 weeks on and 1 week off of gem.  We went 10/3 and they decreased his dose by 25% because of his platelet count.  He will be done on 11/1.  He will get a base line CT scan, then it's just back for regular CT scans and blood work.  His Doctor was not there, so we asked the nurse how often he would get scans and she thought maybe twice a year.  I thought that was a little too spread out, so we will see what the Doctor has to say.  His CA-19 is still hovering around 26 which is fantastic!  Other than the chemo completely making him sick to his stomach, he is doing A OK!  His Doctor called him 1 in 1,000!  I find it very difficult not to keep worrying...I don't want to get too excited, but I feel like we should celebrate his good health.  We are very blessed and we thank God everyday for each day he gives to our family.

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Update on my dad!

Nikki, how wonderful, sounds good to me! Did they give Dad anything for the nausea? I think 2 X a year for scans sounds about right. Of course he probably won't make a decision until he gets this next Scan report. I bet you all can't wait until Nov 1st! Try not to worry too much as we really never know but I like to use the phrase that we will remain realistically optimistic. Looking forward to more great news!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.