Tuesday, February 28, 2012

We were hoping to avoid it but...

So, Dad is continuing to improve inch by inch. He was able to take an assisted shower today. Hurray! He is down to 176 pounds and they are still trying to take off more fluid. Hopefully not too much more...

He is only eating maybe 300 calories a day, so today they decided to put in a feeding tube that he will go home with and use until he is able to consume the required calories by mouth. The TPN (IV nutrition) is not a good solution for very long. I guess it can cause liver damage if used for very long. So they put a feeding tube in today that goes through the nose, down through the stomach and into the intestines. He can still eat and will eat as much as he can until he is eating enough not to need the feeding tube. So, they think he will be home by the weekend! Hopefully not too soon this time...

Might be to much information (stop reading now if so), but he did have diarrhea 3-4 times today with out any help of medication. This was his normal since he got sick almost 6 months ago, so I take it as a good sign that his system is doing something near normal :)

Thank you for your prayers! Pray for a good stomach and a good patient (sometimes he isn't such a 'good' patient) so that he won't need the feeding tube for very long.

Sunday, February 26, 2012

Slowly but Surely

Dad continues to get better each day. He is down to 185 pounds today. Wondering what his true weight is after all of this... Hopefully the TPN is keeping him from getting too low.

Finally today they let him start eating a little. He is taking it VERY slow. Like 2 sips of broth, sip of apple juice and a bite of jello. That is about it for today. He has definitely lost his desire to eat. Nothing sounds or tastes good, but we are HOPING that his stomach is ready and he can eat EVEN MORE tomorrow. Hard to imagine, I know ;)

He is feeling well enough to be worried about the hottub that was supposed to be winterized a couple of weeks ago. I think that is a good sign! He is using less pain medicine and moving a lot more. Let's hope for a "good stomach" and that he can come home this week. Hard to believe it has been 3 1/2 weeks since the surgery. Its been a bit of a blur.

Friday, February 24, 2012

Tubeless! Well, almost...

Great news! It has been a good couple of days. He is down to 192 pounds from 204 two days ago! I never thought I would be glad he was losing weight :) I am sure it feels so good to get so much of that fluid off. AND...

He got the NG tube, catheter and his belly drain taken out today! His pain is a little better and he has walked quite a bit more today. I felt like that NG tube would never come out the way he was the other night when I was there, but it seems that his stomach might finally be coming around.

So, he will start on an ensure diet, I would think tomorrow maybe, and then progress until his digestive system is doing it all on his own and then he should be able to come home on his antibiotics. Hopefully only a few more days!

Thank you again for all of your prayers and concern and service. We all need it :)

Wednesday, February 22, 2012

Has the corner been turned???

I am excited to post some news of improvement! I am sitting here with dad, hoping and counting on a better night than the last one I spent here. My wonderful Aunt Marilyn has been here all day and says the doctors think that dad has finally turned the corner! He just generally seems better. He has been able to walk out in the hall a couple of times today, not too far but much more than the few steps he was able to take to the chair and back. He was only in bed for about 3 hours today and spent the rest of the day up in the chair. And he has needed less pain medicine today as well! Good news!

They began giving him lasix and albumin again today to help get all of the extra fluid off of his body. He is still 204 pounds, so still a LOT of extra fluid on board, but he seemed to respond to it really well so far. I am anxious to see what he weighs in the morning. He still has the NG tube in and they may test it tomorrow to see how he is doing but it sounds like they are going to take things really slowly and hope his stomach "wakes up" and is really ready to do its job before they let him start eating. Until then he will continue to get nutrition through his IV.

Thanks for all of your thoughts and prayers. Love you all!

Monday, February 20, 2012

Hoping for a better tomorrow...again

Hey everyone. I haven't posted because nothing much has changed since Saturday. I think he is a little bit better still, but not enough to get excited about. We keep hoping that tomorrow he is going to show some real improvement but it just hasn't happened tomorrow yet :(

Anyway, not to be too down, he is a little better and he did say today that he feels a little better. He still has the NG tube that keeps his stomach empty, and he is still REALLY weak and in a LOT of pain, and he still has the catheter and ... Nothing has really changed as far as that goes. The doctors did sew up his open incision this morning, so I guess that means they are confident that the infection is under control, and his WBC count has gone down which shows an improvement with the infection.

Two positive things! Sorry I sound like such a downer all the time. Why can't I have my dad's optimistic attitude? I feel like a lot of the time I am just the opposite. I guess we balance each other out sometimes, often much to the other's frustration ;) His optimism has definitely taken a back seat this last 10 days though and has been replaced by frustration. The social worker used the right word the other day for dad, "crestfallen". It is hard to see him that way...

Pray for a better day tomorrow!

Saturday, February 18, 2012

Just a quick update since the surgery. I think he is feeling a little better. He had a PICC (peripherally inserted central catheter) line put in so that he can start getting nutrition through his veins (TPN). Thank goodness! I feel like that alone will help him to start feeling better. No food by mouth for a while I think...

So that is pretty much it for now. Hoping he will turn the corner here really soon! Thanks for all of your support.

Friday, February 17, 2012

7 pound baby

Hey all,

Where do I begin? So, Dad had a horrible night. The pain became so severe from the pressure in his belly that he was unable to sleep pretty much the whole night and this morning while we were waiting to hear the plan from the doctors he started spitting up copious amounts of bile. It was obvious that his stomach was not working AGAIN. Miserable man...

So, just before 10:00 this morning the doctor came in and told us that he would be going in for surgery as soon as possible to clean out the fluid with a scope. He said that the WBC count had gone up so they were worried about more infection. They put an NG tube down into his stomach and immediately pulled out about 1/2 liter of bile. No wonder his reflux was so bad. They took him to the OR around 11:20.

Here comes the 7 pound baby. Apparently when they got the scope they were unable to pull out any fluid because it wasn't really fluid, it was like a thick infected gel substance! Yuck! Sorry if this is making you sick... Anyway, they had to cut a 4 in. incision and literally pull out the gunk with their hands, 7 pounds of gunk to be exact. Then they flushed him out with saline and sewed up the muscle but left the incision open so as not to close in the infection.

Basically the doctor said that it was a very good thing they did this, it didn't happen a moment too soon, and that he was so surprised that Dad wasn't showing more signs of being sick with that amount of infected fluid. So, he is going back to his regular room and the gunk is going to the lab to help them know how to treat him better.

Whew! Sorry if I am sharing too much information. Thanks for all your prayers and loving words.


Thursday, February 16, 2012

February 16th update on Dad

Hey everyone,

People keep telling me that I need to start blogging about my dad's battle with cancer to keep everyone in the loop, so I guess I am going to try. I am not the best at this, but I will try to keep you all up to date.

Here is a very long story shortened...

Back in September my dad, Jay, started feeling kind of off. His appetite wasn't all that good, he felt a little sick to his stomach, less energy, weight loss (he started at about 200 lbs and lost 12 pounds during this time) etc. After a couple of weeks of that he went in to his doctor to try to figure out what was up. After about a week, on a Friday, they decided to do a CAT scan and immediately found a 2.5 cm. mass on his pancreas. It seemed like our world was turned upside down in that moment. It was a LONG weekend filled with wild thoughts, tears, and anxiety. Early the following Monday he went in for an endoscopic procedure to biopsy the mass and a few days later we were told that he had adenocarcinoma of the pancreas.

A couple of weeks later Dad started what they called the most potent and effective chemotherapy regimen available for pancreatic cancer. It was horrible. One treatment every other week for 4 treatments total. Doesn't sound like much does it? Within one week of his first treatment he went from 188 lbs to 168 lbs. 20 lbs in one week! I felt like he was dying right before my eyes. It was horrifying. He was so sick. Anyway, he survived the 8 weeks. They had to lower his dose after that first treatment, and he had to go in multiple times to get fluids and was actually hospitalized once for a few days to get him hydrated and his electrolytes stabilized. It was such a difficult time for all of us, but I am so glad that I had the blessing of being there to help take care of him. We are living with my parents right now while we both build homes so my family and I have been in the mix of all of this since it began. We broke ground on our house 3 days before dad's CAT scan that found the mass. Interesting how things happen the way they do...

So, he survived that round of chemo and in the end, the scan at the end of the treatment showed that the tumor had not shrunk at all, but that the activity of the cancer cells seemed to be decreased. From there he was given about 8 weeks to recover from chemo and prepare for a surgery called the Whipple. He had gotten down to about 157 pounds. Literally skin and bones. It took a few weeks, but he finally started to put some weight back on. He took the initiative to get himself into some physical therapy and ate really well and really started to feel pretty good. During the last few weeks of that time he was actually able to do some work on their house. It was pretty amazing. He got up to about 185 pounds, which we were so happy with.

On February 2nd dad went in for surgery, the "Whipple". It took 8 hours and they removed half of the pancreas, the duodenum (part of small intestine), and 28 lymph nodes. They also scraped the tumor off of his portal vein, but didn't have to resect this major vein that the tumor had been pressing up on. Dad did amazingly well. The doctors said that he was the best whipple patient they had ever seen! They did find in the pathology report that 7 of the 28 lymph nodes did have the same adenocarcinoma cells and if anything, the tumor had grown. This was so disappointing. At that point they told us that in a month, Dad would start radiation 5 days a week for 5 weeks as well as more chemotherapy. We had been told before the surgery that most likely he wouldn't have to do any more of this :(

After a week, they sent him home on a regular diet and some pain pills, but within an hour of being home he took a turn for the worse. It was late in the evening and his pain became very intense and then the sweating started. Mom was up with him all night changing clothes time after time, mopping up his sweat. The man that was doing laps through the hospital couldn't even walk from the bedroom to the couch. Sam and I slept through it all... The next morning, Friday the 10th, we called the Dr. and made plans to come in for a CAT scan at 12:30. By the time we started preparing to go, Dad couldn't even stand long enough to change his clothes. Skoby and I had to carry him through the house, down the stairs and out to the car. When we arrived at the hospital (Huntsman Cancer Hospital) we got him in the wheelchair and he quickly lost consciousness. Any nursing experience I have had stayed locked up in a box as I panicked and ran for help. It was so scary! He came to about 30 seconds later and we quickly made it up to the clinic where they efficiently got him going with some fluids and oxygen.

Anyway, sorry for all the details. He started feeling significantly better with the fluids and was able to do his CAT scan. Okay, I really am going to shorten some of this... Dad ended up being admitted back in the hospital that day. They did find infection in some fluid in his belly and started him on antibiotics, and put in an NG tube to empty his distended stomach that didn't seem to be working. He continued to get worse and ended up in the ICU Sunday night because of a rapid heart arythmia (Atrial Fibrillation) and low blood pressure. He stayed there for 2 days where they got his heart stable. During that time the infection was causing him to be VERY confused. He is much more with it mentally now and he is now back on the regular surgical unit, exactly a week from the time he went home from the surgery. He has gotten 4 units of blood in the last few days and he has gained about 30 pounds! Crazy when he hasn't eaten hardly anything. So today they did another CAT scan of his belly and found a very large amount of fluid, probably about 30 pounds worth between that and his swollen legs! So, we will find out in the morning what they are going to do about that. Most likely they will either place a drain with during a paracentesis or take him back in the operating room and use a scope to clean it out and place one or more drains.

SO, I am going to pull out this super comfy hospital couch and try to get some sleep now. My dear mother has been here on this couch many nights and I convinced her to sleep in her own bed tonight. Thank you to all of you who care and want to know what is going on with my amazing dad. And thanks to all of you who have helped in one way or another. We love you all.