4 months later...

I am a pathetic blogger! But I finally feel like I have significant news to share about my dad. To cover the last 4 months in a few sentences, Dad has remained at home, his latest PET scan (almost 2 months ago) was clear of cancer (Yay!) and he has continued to feel horrible most of the time. If I remember right, he was about 150-155 pounds when he came home from the hospital and now he is 140. He is able to do a lot of things I guess, but he tires out really fast and his stomach just hurts all of the time. He did have a hernia repair I think in June, and then went in last week to repair the repair...

I am trying to keep this short and it is hard! Anyway, almost 2 months ago, Sam's wonderful Aunt Karen brought to my attention something from my dad's pathology report from his surgery back in February. It basically stated that he had cells that were consistent with Celiac disease! No one had ever shared this with us, but conveniently we were going to see Dr. Sharma (Chemo Oncologist) the next day for the PET scan results. I thought this was for sure our answer as to why he wasn't getting any better. We brought it up with the Doc and he completely blew it off. I won't say much, but this is what he told my dad. "We don't want to restrict your diet. You just need to eat more. And you won't like ANYTHING gluten free" !!!! All I will say is that my dad really trusts doctors.  It was a very painful and frustrating 6 weeks or so as I watched him get worse by the day. Most days he would feel horrible and he would get a day or two here and there where he would feel a little better. 

Long story very shortened... a couple of weeks ago my dad started seeing this doctor in Midway that does some alternative treatments. I am not sure on all the details, but I did know that she ran a gluten test on him. I tried to patiently wait for his results as we all (my brothers and me and our families) were becoming more and more concerned. Last Thursday, August 16th, Dad came to me with his test results asking for help. The lab results said, "You show very servere allergies to gluten. Most likely you have celiac disease. This would put a lot of stress on your pancreas, and would keep you from being able to gain weight. It also increases the risk of cancer. Recommendations; Stay away from wheat, oats, rye and barley FOREVER" !!! Prayers were answered that day for sure. He came when he was ready and now, hopefully, there will be no turning back. He has been eating gluten free for 5 days now going on forever I hope.

Please remember him in your prayers, that he will be able to sustain his new diet and that he will start seeing results that will be undeniable! And, if you have any gluten free recipes that you love, send them my way ;) I have been eating mostly GF for about 4 months now but I am still learning a lot, and my dad has to be much more strict than I am. Thank you for all of you love and support. Sorry I haven't been very good at keeping you all in the loop. 

Hey all! Sorry again it has been so long. We are getting settled in our new place and I guess I have gotten a little lazy :) So, a quick update:

Dad came home from the hospital 2 weeks ago today! He did come home with the feeding tube for the first 5 days, getting fed during the night. He still was just not feeling well, having a very difficult time eating, and VERY weak. He got down to 150 pounds at one point during that week I think. On Friday of that week he met with Dr. Sharma, his oncologist. Basically what we learned was that they like to do radiation after a Whipple and it is only proven to be effective if done within the first 3 months after surgery. This is my understanding. It is done to try to wipe out any remaining cancer cells that may have been damaged or weakened or left behind during the surgery. If a person, like my dad, is unable to do the radiation within that time period than usually they don't do anything. They continue doing checkups and scans every couple of months and watch for signs of cancer growing or spreading. SO, basically my dad has 2 weeks before his 3 month window is up and he is doing his best to be healthy enough to do the radiation. He is going back in on Saturday for a CAT scan and then Monday to see Dr. Sharma again to see if he is well enough...

So, that Friday with Dr. Sharma he had his feeding tube pulled out and went home to conquer the world. Much to my dad's frustration he didn't start feeling better the next day, or even 10 days later. He still isn't feeling well most of the time, he hasn't gained a pound, his energy is horrible, and eating makes him sick. BUT he is home and he is free. He drives himself around all over the place and is able to be somewhat human. Better right?

Great news at last!

Hey all,

So I know I haven't posted in a while. First I feel like there hasn't really been any news, and we have been finishing up our house and just moved in yesterday!

That isn't the great news though... Dad went to see Dr. Mulvihill up at the Huntsman and he got his last 2 drains removed and was told that he didn't need the IV antibiotics anymore!!!! And, the doc thought that they should remove the feeding tube and send dad home on Monday. WOW! So, I think dad is going to have them remove the feeding tube, but he better be ready to do some serious eating or he is going to end up having it put back in... I think it will be a lot easier to eat at home. The hospital food make him nauseous ;)

The not so good news is that he does still have cancer in his lymph nodes, like we already knew, and the docs think he should start chemo in the next 2-4 weeks :( It is obviously his choice and they said he could just wait and watch for symptoms and have regular checkups and scans/blood work. I don't think he is going to be ready in 2-4 weeks. He is down to 158 pounds and has a lot of recovering still to do. Not sure what to think about the whole chemo things. Ultimately I guess it is up to him.

Anyway, thanks for all the visits to Dad. It means a lot to him. He gets VERY lonely down there in Orem. Love you all!

Just quickly...

Docs didn't see anything on the CAT scan. Dad is still having the pain, but other than that is doing well. Well enough to call me every night to check and see what we are up to. Almost back to his old self ;)

So dad has been doing pretty well since his move to River Bend minus a couple of issues. His Hematocrit did drop down to 22 and he had to get 2 units of blood transfused, and he has been having a new pain in his left side. It has been going on for about 3 days and so today the docs decided to do a CAT scan. He had to be transported to some Orem community hospital to have that done and we never did get the results today.

So, I guess he is doing okay. I would think if the scan showed something bad they would have made sure to pass on the results...

A change of scenery!

Hey all! Sorry I didn't post before now. We have been very busy finishing our wood floors the last few days...

So! Dad got moved to Utah Valley Specialty Hospital yesterday! His white count never went back up and he is feeling pretty good. So, this is a huge step in the right direction, home!

The hospital is located in the Riverwoods commercial development right at the mouth of Provo Canyon, only 25 minutes from Midway, which is awesome. He is in room 208 and here is the address:

306 West River Bend Lane Provo, Utah 84604
(801) 226-8880

We are calling it River Bend for short :) No one will be spending the night with him there and mom won't be with him all day, everyday anymore, so if anyone feels the desire to visit I know he would love it! It is really good for him.

Thanks for your endless prayers. Love you all!

So, dad is doing okay. Not great improvements, but not really any worse. So, that is good. He hasn't gone backwards for almost 3 days now :)

Friday his white count had gone down to 10, and then yesterday and today it was down to 8. So improvement! His hematocrit has gotten kind of low again, but they haven't had to give him another blood transfusion yet. I think they are hoping to send him to the long term facility on Tuesday, as long as things continue to improve.

He has been able to go walking outside a little bit and that has felt really good. I think this warmth and sunshine has been good for all of us :) Happy Spring!

Hey all,

Sorry it has been a few days. I only have a few minutes but I know so many of you are waiting for news. VERY quickly:

Wednesday-WBC count down (hurray!) and had a good day. Ate more than he had for a long time.
Thursday-WBC back up (BOO!) and had a crappy morning at least.
Friday-From my very brief update from mom, WBC back down a little, bleeding quite a bit around one of his drains, and plan is to keep him over the weekend at Huntsman...

Sorry not very detailed. Not very fun to post when things seem to be up and down every other day... Praying he will beat this stinkin infection.

Love you all!

So, Dad's WBC count was up even more today, so they did another CAT scan. It looked like the 2 large areas of infection from last Friday were smaller, but one other area was not shrinking and so they did another paracentesis (sp?) and drained a bunch of fluid and placed a 3rd drain up between two of his ribs. This is causing him a bit of pain, but all in all everyone seems pretty positive. In general the CAT scan looked better than all of the previous scans, and he feels better today than yesterday. I think he seems better in general than when I was with him on Friday.

SO...one day at time! Lets pray for a lower WBC count tomorrow :) If all goes well they are talking about sending him to the long term facility on Friday.

By the way, the doctors have been very attentive since our meeting last Friday ;) To say the least, we were very bold in voicing our frustration and our desire for better communication. It's nice...

Again?

Hey All,

So... my dad was supposed to be moved to the long term acute care hospital today, BUT his white count was up AGAIN. Will this poor man ever get some good news that lasts??? He just isn't feeling all that well either. Even he's not sure if it is because he really isn't feeling well, or if is just because he is down in the dumps. He ate a single piece of cantelope (sp?) today and had to have a puke bucket nearby. Docs said if it doesn't go down tomorrow morning they will do another CAT scan...

Just in case you have been contemplating it, he does enjoy visitors :)

Sorry that is it for tonight. I know I said I would fill you in on the meeting. Maybe tomorrow...

Love ya,
Darcy

Some answers finally

Hey All,

This is going to be quick for now, but I am exhausted and ready to climb into bed. After and hour and 45 minutes of grilling the doctor my dad will be staying the weekend and then most likely be moved to a step-down hospital (between a hospital and skilled nursing facility) for long term acute care. Sorry for being short. I will try to fill you in more tomorrow evening.

Darcy

They can't be serious!

Sorry I haven't posted any results from yesterday. I still feel like I don't have any answers....

This is what I do know:

They did a Cat Scan and must have seen some fluid pockets (wouldn't know because the docs never showed their faces)

They did an image guided placement of drains and saw, according to my dad only, 2 grapefruit sized abscesses and a bunch of small ones. They placed 2 drains and it sounds like these areas are higher up than the last infected area. Not a single doctor showed their face yesterday to explain or answer questions, since 6:00 a.m. when they said his white count was up. It is so hard being home!!!! I feel so helpless.

This morning they came in and told my mom this: He will still probably go home this weekend, but he will go home with the PICC line and be on 1 month of IV antibiotics, he will go home with his 2 belly drains and the feeding tube!!!!!!!!!!!!!!!! AND he has a bit of a fever this morning. Am I nuts or does this sound asinine?!!!!

Hoping to get some more answers today. I wish I could be a bug in my mom's ear and give her cues of what to say when, like "What are you thinking you.......?!!!!!" My mom is too nice....

Thanks for letting me vent. Am I out of line?

Another set-back?

I just got a call from my mom and my dad's white count is up again. Infection somewhere...

So, they are preparing now to do another CT scan, have started him on more IV antibiotics and are HOPING that it is just a urinary tract infection, not more infection elsewhere. Hopefully we will have more answers this afternoon.

Boooo!

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.

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.

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 :)

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!

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!

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.

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.

Love,
Darcy

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.

Night.

Darcy