I made it back to Ohio last Monday and Dad passed on Thursday June 27th. We were all here with him as he passed.  He had slipped into a coma his last two days, but we knew he could here some of what we said to him.  The past few days have been a big blur with his funeral this past Wed.  He had over 600 people come to his viewing alone.  The amount of love and support that has been given to our family from the community, family and friends has been amazing!  I will greatly miss my Dad.  May his live forever!

A huge thanks to all of you for your continued love, support and wisdom!

Rena

Thanks everyone for your support and wisdom!  Dad is back home from the hospital and Home Hospice care is in progress.  It has been a very challenging few days.  Mom has come to acceptance that he may not rebound this time. He is sleeping about 90% of the day, eating vey little...etc.  his blood spots his legs are from reduction in his liver function.  Unfortunately there was not much the hospital could do for him at this point....which made it clear that it was truly time for Hospice. 

Am struggling because I have to head home for a couple days before I can come back.  I am so scared that we are going to lose him the minute I leave.  I am praying that God holds him tight!

Rena

Thanks Lainy & Gavin!
Dad is not currently under hospice care.  As you may recall we had a couple close calls but this time it feels different to me and I am sure that this may be the time to get it in place.  Dad's Dr's have had the hospice team meet with him and mom a couple of times, but he was not ready. 

I'm bracing myself for a very tough day.  I just had a long talk with mom and I can feel that she knows it is time.   She is getting dressed now and then we plan to wake dad and see if we can get I'm there.  If not, we agreed to call 911.  He is actually sleeping peacefully right now, but I just checked his tummy, and it is even larger than it was a few hours ago and he has not moved.

I will keep you posted.  Lainy if you could email the list of signs at the end that would be great.  My email is renabroadnax@gmail.com.

I will touch base later today with an update.  Thanks so much!
Rena

I am here with dad and mom.  Dad made it through Father's Day and his birthday yesterday, however  mom and I have been up all night with him.  I am pretty sure that he is showing signs of liver failure ( can't eat, vomiting, pressure in his tummy, extreme fatigue, sleeping for long hours at a time, extreme nausea, blood blotches on his lower leg, swollen stomach after just getting drained last week).  He refused to go the ER an hour ago and begged mom to just let him rest for a bit.  I told mom that we need to find out about his liver function so that we and his Dr's can plan accordingly.....please tell me that I am not crazy!!!  I know that we all say this...but this is such a horrible & scary roller coaster ride!

Rena

Hello,
It's been awhile since I've  posted. It has now been 9 months since dad was diagnosed with bile duct cancer.  He has had a total of 6 hospital stays,  7 ER visits and 2 very close calls where we thought he was leaving us.  Currently he is home and having many up and down days...fevers, pain and lots of fatigue.  His weight has gone from 190 down to 137.  It is extremely hard to see him in this state.  Two weeks ago he was able to attend my nephew's high school graduation.  It was a very emotional weekend as he was not sure he would make it.  I am traveling home next weekend to be with him for his 69 birthday and Father's Day.  I am so looking forward to celebrating with him and the family and hoping he is feeling okay. This week has been challenging for him. 

This journey has shown me the strength that both mom and dad hold!  They are simply amazing!  I love them both so much. 

This website and discussion has helped me get through all of this.  When I need strength, I pray and then come here to pull for the strengths of all of you! 

Thank you!
Rena

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(167 replies, posted in General Discussion)

Hi Pam,
I knew I checked in tonight for a reason.  God drew me here!  As a mother myself and watching dad go through his struggles with the awful disease, I can not imagine the numbness you must be feeling right now. I do know that God is with you and Lauren and watching over you!  Stay strong Pam!  I am keeping your family in my prayers!
Rena

Dear Deborah,  my advice would be not to give up just yet.  My dad was diagnosed last Sept and he has hit some very hard speed bumps along this journey already....such that we thought we were gonna lose him three times now.  He keeps rebounding and is not ready to give up the fight.  He told me the other day that he is not ready to leave us!  It melted my heart.  Be sure to enjoy her while she is here and focus on making her days lovable and comfortable.

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(122 replies, posted in General Discussion)

I've been off site for awhile because dad has been having the same issues as Lauren...severe swelling in his stomach, legs & feet.  I did research to find out what all of the swelling meant and finally talked him into going to the ER on Saturday morning.  He ended up in the hospital for a couple days.  The Dr drained 5 liters of fluid from his stomach (which I knew would be the case).  He is back home now but still has some swelling in the stomach.  From what I understand, only 5-6 liters of fluid can be drained during a single procedure.  So we are sure that if there was no max, another couple liters could have been drained.  He is 18 pounds lighter from what he weighed Saturday.  He had lost all ability to eat or want to eat because he would feel miserable after two bites. 

I share all of this to share dad's experience on the fluid retention. In addition a blood clot was also found in each leg.  Never a dull moment...right Pam?

Well I wish Lauren all the best!  She sure sounds like one tough cookie!  Big Hug!

Rena

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(7 replies, posted in General Discussion)

I am so sorry to hear about your father!  My dad was diagnosed around the same time and your day's journey sounds some like my dads.  My dad is 68 and like yours was full of life...some say that he loves life more than anyone they know.  Well that has all changed now.  This disease brings so much discomfort and sadness!  I am trying to prepare myself for what you are experiencing today but I an not even go there.  It hurts too much! 

You are so right in saying that your dad is no longer in pain!  He is a peaceful place now and he can rest without the pain that had taken over his life.  Stay strong and embrace your family members as you all try to work through your own pain.  Sending many many prayers your way!

Rena

Kris,
Your thoughts and fears are within us all who are dealing with this ugly disease!  Isn't this a great place to share it all!  In the past few days I watched my dad hit rock bottom and then decide to fight for a little more time!  It was the most amazing thing to watch.  I was truly amazed.  Dig deep inside yourself.... You can do it!  Be kind to yourself!  Eat the steak, drink the wine and enjoy a nice bubble bath!  You deserve it all:)
Rena

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(14 replies, posted in General Discussion)

Clare,
I am so sorry to hear of your sister's passing!  Sending you big hugs, condolences and prayers!  May her spirit live forever!!!
Rena

My dad is simply an amazing soul!  Two weeks ago he crashed twice while lying on a hospital bed in the ER.  The amazing Dr's got him stabilized after draining his stomach, giving him 10 bags of blood, 9 bags of fluids, then spending 5 days in ICU and 3 days in step down.  Dad decided that he was not ready to leave us yet and he fought back with a vengeance.  He is back home again but still fighting several challenges...loss of appetite, severe swelling in his feet, legs and mid-section and he is sleeping tons again. I was able to spend 6 days with mom & dad during and after his hospital stay.  I was so glad that I was there to support my mom and to help get dad home form the hospital.  As I left for Ohio, we weren't sure if Dad was going to pull through.  I tried to prepare myself for the worst!!!  With amazing grace, he jumped over another hurdle and pushes forward with hope!

Thanks for all the prayers!  I made here to Ohio late yesterday and dad is still hanging in there.  My brother and I ended up calling his Dr late Tuesday nite to see if there was anything else they could do or look at in regards to his internal bleeding because up to that point we didn't have clear answers as to where it was coming from.  As a result...the next morning they ended up doing an arterial scan....can you believe they found an aneurism (large) on his main artery.  They determined that they could go and possibly try to repair it.  After a 2nd attempt, the Dr was able to make the fix.  At this point, we are waiting to see if the fix is working. The are closely monitoring his blood levels to see if the internal bleeding has stopped.  However, he is still so weak, not talking or able to eat much.  Seeing him lie there so helpless hurts so much!  I am trying to come to peace with the fact that he very well may be at the end of his journey. We will see what the next few days bring.  I am able to stay for at least a week...so glad about that!  My mom and Dad's mom really need me here right now!  This is for sure the hardest thing that our family has been through!  I love the quiet and peaceful moments alone with my dad!  He often can share his feelings and thoughts with me that he doesn't tell my mom in fear that she would worry. 
Please keep him in your prayers and I will keep you all posted.  Your hugs, prayers and encouraging words are most appreciated.

It's been 2 months since my last post, but I have checking in often to seek answers.  I have to say that as my family has navigated through this horrible journey with my dad, this website has been the best place to get real answers and support! 

After dads next to death experience back in December, he bounced back for a few weeks and was able to do some normal things that he loves...travel, spend time with family & friends and eat again.  He began this journey weighing 198 and now weighs 138. 

Moving forward...two weeks ago he began to decline again, no energy, fevers, rigor shakes, vomiting and then a few days things became even worse.  He began to have blood in his vomit and stools and developed pain in his right leg. He is now in ICU and suffering from internal bleeding and a very low blood pressure. He has had 7 bags of blood since yesterday and his counts remain very low. This evening my mother was told that there is nothing else they can do.

Even though you know this day will eventually come with stage 4 bile duct cancer....it still feels like a bad dream.

Because of the snow storm that is attacking the Midwest....I will have to wait for this storm to pass before I can travel to him.  it is about a 6-7 hour drive. I am hoping to him on Wednesday!  I am going to be devastated if I don't get to see and spend time with him before he leaves us.

Going to bed tonight with a very heavy heart.....

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(7 replies, posted in Introductions!)

Welcome Mary!  It so good to hear that you have a good support team.  My dad is the one with CC and just diagnosed this past September. It's already been quite a roller coaster ride for him and he often talks about how he doesn't think he could get through all of this without his support team around him. So with that, embrace your blessings and stay strong!  You will find that this site is also a huge support!

I agree!  So much talent amongst you guys!  Awesome.  I'm wondering if Randi has an update on her scan yet.  I hope it went ok!!!

Marions...no one has mentioned a mets on his tailbone...Ummm!  We did get the pain under control with pain med.  he hasn't complained much about it the past two days.  I hope it stays that way.  Thanks so much for your feedback!  I love all the knowledge here!
Rena

Dad finally was released from the hospital today.  On Tuesday they inserted 2 metal stents and removed his external drain tubes.  After several bags of IV fluids and blood, he is back at home tonight.  Of course it is hope that the stents can do the job!  Poor dad has been through so much in the past few weeks.  I still find it hard to believe that this disease can bring so much turmoil to lives.  Dad is starting to not act like himself!  It's so sad! 

I talked to my mom a bit ago and she said that dad is leaking bile out of the hole where the one drain tube used to be...can he get a break?

Hoping for some comfort for my dad in the days ahead!  The holidays have always been such a joyous time for our family and we are planning to all be together to cheer up my dad.  I just hope and pray that he is feeling up to it!

Rena

The last few days here visiting with Mom & Dad have been very crazy, emotional and challenging. I arrived on Wednesday not knowing what to expect.  Upon first glance I could not believe how frail he had become since the end of October. It was apparent that the cancer is kicking him in the butt.  Thursday I drove Dad, mom and my grandmother over to the Cancer Hospital in Columbus.  We initially didn't think that dad could make the trip, but he insisted.  We called the Dr. that morning tonged his opinion and we decided to make the trip as he wanted to evaluate his condition if possible in order to plan his next plans for treatment. So off we went...I prayed the whole way!  Upon first glance, his Dr knew that he was severely dehydrated again and arranged for dad to be admitted to the hospital for 2 days for IV fluids and blood.  We did not go prepared for an overnight stay. I ended up staying at the hospital with dad and arranged for a nearby hotel for mom & grandma.  During his stay, Dad decided that he wanted to forego the drain tubes and get the wall stent....so he will be re-admitted tomorrow for a few days to get 2 metal stents put in. 

Last night here at home, dad started to bleed again from around his tubes. We called the home healthcare nurse and she came over.  It was determined that a clot was blocking his tubes and the blood had no where to go but out from around the tube. 

The complications that can come with this cancer are truly horrible!!!  On top of everything else, his tailbone is causing him major havoc.  We are hoping that his new pain med will help with that.  He has only had to take 3 pain pills thus far, but I talked him into taking 2 a bit ago. I hope they work. He was in tears! 

We are praying that this weeks procedure brings dad some relief!!!

Rena

Thanks Lainy!  Wish me luck....Dad is insisting still on going to his appointment but I am getting ready to do the intervention speech!  I will update you later!

Dad is now bleeding into both drain bags!  I made here to Ohio yesterday.  He is not doing well at all.  Earlier in the weak he was severely dehydrated. He has an appt today with his onc dr but I am not sure he will make it due to the trip being an hour and a half.  I am trying to talk mom into hospice.  This is just too much.  He has been throwing up bile for two days now and he is refusing to go back to the hospital.  I think it may be time to call hospice in.

Anyway....back to the bleeding into the drain bags.  Can anyone share more on this???  The Dr doesn't seem overly concerned....is this because it is expected or happens often?  Hoping to get some feedback before speaking with the dr later today.

Dad is finally home from the hospital, but he is very weak and still not feeling well.  I was really hoping that he would get some energy back at least for awhile. It is really hard for mom to see him like this.  It makes me so sad when I think about it too hard.  Before he left the hospital, the hospice counselor spoke to them.  I don't think that either of them are ready to talk or think about that.  But the way that dad's health is quickly declining, it may very soon be necessary.  I plan to talk to them a little more about hospice during my visit with them this week.  I am so excited to see them, but I also know that it is going to be really hard for me too see dad so ill.  I last saw him early November and he was beginning to really feel the illness, but since has gotten much worse.  I pray for strength for my family daily!

Finally some good news!!!  First of all, dad called me this morning and said that he had a bowl of cream of wheat and fruit in front of him! Yes, he can finally eat after his bout with pancreatitis.  He was so excited.  He was able to keep all food down today!  His internal bleeding is finally subsiding...there was very little blood today and his lab work all showed improvements! It was finally determined that a vein was bleeding due to friction caused by his previous drain tube.  If he can stay stable over the next two days, he will get to go home over the weekend.  He will have to go home with drain bags but its a small price to pay after going through the past few days! I plan to go visit next week and stay for a few days!  It will be great to spend another few days with them!

Another curve ball....dad bleeding continued through the night and this morning his levels were dangerously low so he was given blood.  Tomorrow they will attempt to remove his plastic stent.  At the same time they will check for variances.  I searched postings on this topic last night and had already began to wonder about that.  However, when they said the bleeding was being caused by the stent...we went with that.  Perhaps it is both!  Regardless, they should figure it out tomorrow.  In the meantime, he still has not been able to eat because of the pancreatitis.....is that common with this condition....no food????  It just makes me so sad that he is trying to fight this and has not had a bite to eat since Saturday!!!  It seems so cruel....please share if this is the protocol???

Trying to stay sane!
Rena

And yet another stressful day!  Dad's bleeding intensified overnight. They managed to replace his drain tubes this afternoon.  During that procedure they figured out that the plastic stent had repositioned and was causing the bleeding. I sure hope they are right!  They will do a separate procedure to replace his plastic stent with the metal wall stent when they'd feel dad is ready!  He has been sleeping mostly since the procedure that ended late afternoon.  I hope tomorrow is a better day.  We are all exhausted from all the stress and worry!  It's so hard watching mom & dad go through all of this. I read a recent post that said this disease SUCKS!  I couldn't agree more!!!!