Tuesday, November 25, 2014

No Drain, and ALMOST ready to go HOME!

The doctors came in around 8:00 am and said we were still waiting to hear from Radiology whether or not he needed a drain to remove the excess fluid build up behind Josh's stomach. No food or water until the decision was made. "We should know within an hour..."

FINALLY at 11:15 am, one of Josh's doctors came in and said you are 90% away from getting discharged! No Drain is needed. They are just going to fight the fluid with a high dose of antibiotics and keep an eye on him. If we see ANY symptoms of problems, we need to call the doctor's pager and let her know what's going on.

We have a STACK of prescriptions that are going home with us and our trip will probably take double the time to get home because we need to stop quite often to let Josh walk around. But he is GOING HOME!!!

I can't wait to him home. AND BEFORE THANKSGIVING!

Monday, November 24, 2014

A Small Set Back

So we've gotten the results of the CT scan back and it confirmed that Josh has some fluid build up behind his stomach, which is causing his lack of appetite, inability to eat a meal larger than a few bites, and his vomiting. The doctors will put him on an antibiotic to keep any infection from appearing or spreading and it should help the fluid absorb back into his body.

They will discuss the scan results with Radiology tomorrow to see if a drain is necessary, but the Doc was almost sure they would not need it. Josh is still tube-less for now, but they will have to use an IV for the antibiotics and the other meds.

All of this means at least a couple more days here! UGH!! We both are so sick of this room and being here. I just want to get him home, but I want to make sure he's stable before we leave. The LAST thing I want is to leave sooner than needed and something go wrong when we go home.

On the plus side, Josh's work is participating in the No Shave November Cancer awareness month and Josh's bear is coming in great! Haha. We'll take what we can get...

Change of Plans...One Step Back

As of last night, Josh was set to have his staples removed, pack up and be released Monday afternoonish. But this morning he was given a pain pill, as always, but he had an empty stomach which caused him to vomit about 45 minutes later. This, along with the fact that his white blood count levels are a little high, led the doctors to order another CT Scan for him today.

They want to make sure there is no fluid building up internally from surgery that is keeping his stomach from "waking up". They explained that if there is a fluid pocket anywhere behind or around the stomach, the stomach basically plays "posseum" and will not function properly. His appetite could be small (which it is), his white blood counts could be high and he could vomit. Since all three things are happening, they ordered the scan.

They have the scan scheduled sometime today, but don't know when. They will give him his contrast with juice in about 10 minutes. Hopefully, they will be able to see something and fix it. If fluid is found internally, they will need to insert a drain and observe him for 24 hours. Looks like at least another night at MD Anderson. Nerts!

Sunday, November 23, 2014

Day 11, TUBE FREE!!

This morning, Josh's doctor approved the removal of all of his IV tubes. He's actually able to wear regular clothes now, and after a hot shower is sitting comfortably in his bed.
We still have to keep an eye on the clock and stay on top of his pain pills though. During the night, our wonderful nursing staff were able to wake him up to give him his meds (since the pills only last about 4 hours), so he didn't wake up in severe pain. Although the constant checking and re-checking made for a difficult night sleep. We were able to sleep in this morning after the first doctor visit and feel much more rested. The more rested and recovered he gets, the less he will have to use the pain meds.

So now we have to do the research and trial and error of figuring out how to manage his diabetes. Another drawback from losing his pancreas is the fact that he now has to regulate both the ups AND the downs of his blood sugar. The pancreas not only helps lower high blood sugar, but it helps raise low blood sugar levels. So he will not only have to have insulin to help lower his levels, but he will need to carry something called Glucagon which helps raise his levels.

We've been bombarded (in a good way) with lots of information, videos, doctors, diabetes counselors, and devices to help him manage his numbers. Josh's numbers will, from now on, always be a little bit higher than the normal range, but that's good for him. His appetite is still pretty small, but at least he's eating regular foods. He's doing great at keeping his numbers stable.

Looks like the Doc will release him from the hospital tomorrow but he may ask us to stay in the area for another day for a follow up. Since Thanksgiving is right around the corner, the Clinic where the surgeon sees us will only be open on Tuesday. That's great for us, because it means we should be able to come home before Thanksgiving!

Josh's favorite holiday of the year is Thanksgiving. I feel sad that he will miss out on all the turkey and fixings this year, because they are probably sending him home on a soft diet only. But we are grateful that we will be home on Thanksgiving.

Several people have asked if we would like to join them for Thanksgiving, but we are going to stay at home and just rest together as a family. But thank you to everyone that has offered. Josh doesn't need to be traveling very far and our menu will be a non-traditional one this year. Just excited to get him home and back to normal. He's just excited to watch the Longhorns play on Thanksgiving Day. Sounds like he's almost back to normal! :)

Saturday, November 22, 2014

Day 10, One Less Tube...

Josh had a better night last night. He had a little bit less pain, but we are trying to find the right balance of pain meds to last him through the night so he doesn't have to wake up to push his pain button. I think we are close.

Today, they took him off of the IV pain meds and are trying to get him onto a pill pain regiment. That way we can adjust his doses while we still have the help of the doctors before we go home in a few days. One less IV!! We are hoping to have him IV free by tomorrow so we can have at least 24 hours of managing his insulin levels on our own, but with the added benefit of experts at his bed side.

His diet is continually getting better too. Two days ago, he was able to have limited clear liquids (broth and some juice), then yesterday it was full clear liquids (broth, juice, pureed oatmeal, yogurt, jello). Today he's been moved up to a Soft Diet which opens up a WIDE variety of food. Sandwiches, pasta, cereal, omelets, soups, breads and even grilled chicken or hamburgers are now available to him. Although his stomach can't handle a MAN-sized meal yet, his appetite is growing little by little.

About 4 days after his surgery, a small purple bruise appeared on his right hip/side area. It was about the size of his fist. It has steadily spread into a deep, dark purple bruise that is the size of watermelon. The doctors say it is probably from the procedure and all the internal rearranging they did. It's continued to grow in size everyday, but hopefully we're close to it's peak. I'd show pictures, but I can't show it without showing a little of his booty too.

We are both growing weary of being in the hospital, but we've been very well taken care of. The night nurses have been especially helpful. I'm basically confined to my reclining chair most of the day, but we've been up so much as night that usually one of us is sleeping at some point during the day. We have a window that overlooks a parking garage and I overheard the early morning obligatory honks and yells as commuters fight for parking spaces. But at least I can see the sky.

As usual, Josh over packed on the amount of clothes he would need, so I took his giant duffle bag to the car to wait until he's ready to leave. And on the other side of the coin, I didn't pack enough clothes. Had to go do some laundry at the guest laundry around the corner. They really have thought of just about everything here.

I'm reminded of how blessed we really are, given our circumstances, as I walk through the halls of this facility. I've seen small, bald-headed children being pushed in strollers while attached to tubes and contraptions. I've seen men and women covered head to toe with blankets, masks, and gloves to prevent infection as they roll to sit near a window to see the world outside. I've seen countless family members curled up sleeping on benches that are too small, and tired, red eyes of those who are dealing with something heavy. I've been on that bench, with those tired, red eyes over the last 10 days. I've felt my heart hurt as our doctor delivered some bad news.

But I am thankful that the news was not worse.
I'm thankful that Josh is getting better, not worse.
I'm thankful that I have family willing to watch Lincoln for days on end, without knowing when we will be coming home.
I'm thankful for the expertise of the doctors, nurses, and staff here at MD Anderson.
I'm thankful that my little family will soon be reunited and that we can sleep in our own beds.
I'm thankful to know that even in the worst of times, I know that Josh and I are loved. Not only by our family and friends, but by our Heavenly Father and by our Savior Jesus Christ.
He knows us individually and what we are going through because of the Atonement.
I am grateful for the comfort the Holy Spirit had provided us.
So, all in all, I'm just grateful.

Friday, November 21, 2014

Hospital, Post-Op, Day 9

After several days of pain-filled nights, we finally got a decent nights sleep. Josh was able to manage his pain at a tolerable level so he could get a few hours rest. Sleep was still limited.
Doctor Katz, his surgeon, visited us this morning with pathology lab results from the tumor biopsy. There were 35 lymph nodes removed, but only 2 had cancer in them. Good news, but there is still the chance that the cancer was able to spread outside of his pancreas. He will continue to receive scans every 6 months to make sure the cancer has not spread anywhere else.

That seems a bit too long for my liking, so we will probably ask for another scan in a couple months, just to be on the safe side.

He is resting now, but he is now able to eat some soft foods like oatmeal and pudding. Before, he had a tube inserted into his nostril down to his stomach to extract any bile that might build up. He was unable to eat for almost 6 days. Then when the tube was finally removed, he started to vomit bile, a bad sign. If that continued, the tube would have to be reinserted.
Thankfully, he was able to get past the vomiting and move onto holding down clear liquids. Since then, he's been getting progressively better. Just still need to work on pain management. He's trying to be tough and hold off on using his pain meds, but it slowly makes the pain unbearable, until he needs a double dose of meds, which then knocks him out. It's a vicious cycle. But I feel we are close to finding a balance.

Here's why he is in so much pain. The procedure that we were trying to avoid was called a "Whipple" which means the surgeon has to remove the head of the pancreas. Because the pancreas is so integrated with other organs, the surgeon must also remove the first part of small intestine (duodenum), the gallbladder, the end of the common bile duct and sometimes a portion of the stomach in order to reach the pancreas. In the reconstruction phase of the operation, the intestine, bile duct and remaining portion of the pancreas are reconnected.

Josh ended up with a Whipple PLUS, which meant that the surgeon removed his entire pancreas plus a portion of the stomach, intestines, and bile duct that the pancreas was touching. He also had to reconstruct a vein leading to the liver that seemed to be affected.
This is not an accurate depiction of what was actually done for Josh, but it gives you a good idea. The white dashed line areas are removed, including the gallbladder.

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After the surgery is complete, it now looks like this.
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Here is Josh's actual incision scar. He said he felt "gutted." Well, he wasn't far off. I don't blame him at all for wanting to use pain meds!!
And to top it all off, Josh had an allergic reaction to the surgical tape they used on his back for his mid-section epidural. So he developed a large, oozing, itchy rash. Thankfully both the incision and the rash are healing well.

Josh's Cancer Diagnosis and Treatment

The last 60 days have been rough for us.
In late September, my husband Joshua D. Smith felt some pain in his abdomen and decided to have it checked. After a CT scan, MRI, and endoscopy, we learned on October 1st that he had a cancerous tumor in his pancreas. It wasn't pancreatic cancer, but due to the fact that the tumor had two different types of cancer cells within it, made it very rare (less than 100 cases reported kind of rare). The majority of the tumor (they thought) was called a neuroendocrine tumor, which is fairly common. In fact, the surgeon first told us, "If you are going to have a pancreatic cancer, THIS is the one to have." I don't find that very comforting. The more rare part belongs to an Aciner cell carcinoma, which is more rare on its own, let alone in someone his age. However, the crazy rare part is that the Neuroendocrine tumor and the Aciner cell are in the same tumor. The Aciner cell is more aggressive than the Neuro, and they aren't sure which is taking up the majority of the tumor.

So we scheduled an appt with the surgeons at MD Anderson Cancer center in Houston. His surgery was scheduled for Thursday, November 13th to remove the tumor and a portion of his pancreas.
We arrived, with our son, a couple days early for pre-op appointments and a little fun around Houston. Our plan was to take in a museum or the space center before the surgery, then during the surgery, Lincoln and I would go to the Zoo to keep our minds off of Dad being in a serious surgery. That didn't happen.

Upon our arrival, we were told that Linc would not only be banned from going to Josh's pre-op room, he would not be allowed in his hospital room after surgery. That threw a wrench in our plans. I had to call for back up. My mom was able to drive down to get Linc while I stayed at the hospital, waiting for surgery to begin. We arrived at 10:30 am. They FINALLY took him back to prep at 4:00 pm. I left the hospital to get something to eat and returned around 5:15. As I was settling in to eat and watch a movie, the nursing staff came to update me on his status. All was well, his vitals were great, and they had begun the surgery. Ten minutes later, they came back to tell me the Doctor needed to talk to me.
That was the scariest 4 minutes of my life. The worst ran through my mind. Had he died? Had the cancer spread so far that surgery was no longer an option? Am I going to have to raise my son as a single parent now? How will I go on?

Thankfully, the first words out of the Doctor's mouth were, "He's ok." Scenario one averted. "But it's a nasty one...the tumor is bigger than we thought. It hasn't spread outside of his pancreas," (scenario two averted) "but I have to take his entire pancreas. I need your permission to do that, since I don't know what he would have wanted." After a brief moment of questions as to whether chemo first could shrink the tumor to save some of the pancreas was an option, only to hear that it was not, and a quick call to family, I gave him permission.

I knew that Josh was NOT going to be happy. That's all he ever talked about before the surgery was how he wanted to keep his pancreas. I was going to be in trouble when he woke up, either way.
Seven hours later, the Doctor reported to me that he was able to remove all of the tumor and any lymph nodes they thought could be affected. He considered it a success.

To skip to the most important details, his recovery will be long and hard but we are grateful the surgery was successful. However, because he no longer has a pancreas, which produces both insulin to stabilize blood sugar and enzymes to help break down food, he has now become a life-long diabetic and will need to take enzyme tablets at each meal to aid in digestion. I never knew how important your pancreas actually is until now.
And due to the removal of his spleen, his immune system will be a greater risk for disease and colds. However, he had already begun a series of shots to help build his immune system back up to wart off anything.

Thank you to all who have sacrificed your time and schedules to help. We are forever grateful to you and all those who have kept us in your prayers. We will need many more prayers and patience during this time as we still don't know if chemo will be necessary, but know that we can make it through this storm together.
I will add updates to this blog, since so many have expressed an interest in his recovery. It is easier to update this, instead of sending out 50 text messages every day. 

Thank you again!! Love, Josh, Lacey and Linc