Bilirubin back up.. Port back in Friday

We found out today that Curtis' bilirubin is back up. It was down to 2.1 after the stent was put in and it is now 6.4 today. They first scheduled an ultrasound to try and see if there was another blockage or if something happened with the stent, but after speaking to the surgeon, they decided to re-draw the bilirubin level on Monday and see if it has improved. The surgeon thinks that the bilirubin might be elevated because it was taken too soon after the attempted gallbladder procedure. The main issue with the bilirubin is one if his new chemotherapies Irinotecan, is excreted with bilirubin and if the bili is too high, the chemo won't be excreted proparly and will accumulate in the blood. Not good. The plan so far is for him to get his port back in Friday and some of the chemo Monday, and if the bili is down below 3ish, they would consider adding the Irinotecan. He is actually feeling well, mostly just tired. We got to spend some quality time with Tavner today, so that lifted both of our spirits. We are moved back into our house in West Valley. We had to rent it out after Curtis was diagnosed because he has been unable to work. It has taken some time to get moved and unpacked especially with all extra activities lately, but we made it thanks to wonderful family and friends. I am having to take a break again from nursing school. I will be set back 3 months and won't graduate until Dec 2012 now, but I will be able to spend time with my hubby, Tav and the dogs and settle in a bit. I had the surgeon take some pics of the tumors in his gallbladder to post next week..

Surgery did not go well..

Within 15 minutes of taking Curtis back to surgery yesterday, the surgeon came to the waiting room to find me. There has been a disagreement of what exactly was wrong with the gallbladder between the surgeons and the oncologists. The oncologists thought it was cancer, the surgeons thought it was an infection. The surgeons did two small incisions and looked at it with a camera and there is extensive cancer growth not only in his gallbladder, but through-out his abdomen. The tumors in and around his gallbladder and wrapped around the blood supply to the liver, making the procedure in-operable. The surgeons and oncologists are having a meeting this morning to discuss what the next step will be. I will update as I get more information.

Surgery today

Surgery to have Curtis' perforated gallbladder removed is today around 3:30pm at the University of Utah Hospital. Dr. Glasgow will be doing the surgery and is hoping he can do it laparoscopically. He thinks he has a 50% chance of doing it this way versus open. If it is done open, Curtis will be in the hospital all week. I will update when we know how the surgery went. Thanks for all the love and support :)

Many Updates

Last week Curtis noticed his port looked red and puffy and was having some pus discharge. We went to the clinic and we noticed on our way there that his eyes looked a little yellow. When we got to the clinic, they looked at the port, and had a nurse from surgery come and take a look at the port as well. It was decided that his port was infected and needed to come out immediately. We went over to the U of U hospital and saw Dr. Nelson (who originally put the port in) and had it removed. Labs were done to see why his eyes were looking yellow. They labs came back with an elevated level of bilirubin in Curtis' blood. We were scheduled to get an ultrasound at 8am the next morning. The ultrasound showed an extremely enlarged gallbladder with normal findings on the spleen, liver, and kidneys. We went back to Huntsman to review the results. The surgeon decided they needed additional imaging and sent us to have an MRCP done which is: Magnetic resonance cholangiopancreatography, in medical imaging, a technique to visualise the biliary tract and pancreatic ducts. This was a 12 hour day by this time.. The following day we came back to Huntsman to get the results and the preliminary report looked like there was tumor in the gallbladder. They decided they thought it would be best to put a stent in his common bile duct to try and drain some of the bile into his intestines. Here is a pic of the gallbladder and biliary ducts:


We were called back that afternoon and told we needed to come to the hospital immediately to get started on antibiotics because the final report from the MRCP came back and the gallbladder has ruptured. A ruptured gallbladder untreated can cause peritonitis, sepsis and death. We came to the hospital and they decided to go in and put the stent in the common bile duct to release some of the pressure of the gallbladder and avoid further damage. The stent was put in around 6pm Monday evening, 1/25/12. Curtis was in severe pain before the procedure starting several days last week. Once the stent was put and the pressure was released, the pain and his bilirubin levels started to drop. He is still in the hospital and will be released this morning. The plan is to have Dr. Glasgow due surgery to attempt to remove the gallbladder laparoscopically, if possible on Monday 1/30/12. The gallbladder will be biopsied to confirm cancer, and if all goes well, we are hoping that he will be able to start his new chemo folfiri and cetuximab two weeks following surgery. His last PET scan 3 weeks ago showed growth of the tumors in his lungs and new tumors growing in his lungs as well. We are not sure when the port will be replaced (Curtis refuses to get a PICC line) we are hoping they can do it with the gallbladder procedure, but it may need to be a separate surgery in the next week or so.

Last week we began to move back into our house that we had to rent out for a year following Curtis' diagnosis last December. It feels nice to be in our home again.. 

There hasn't been much work done on the Airstream as of yet, if Curtis feels up to it, we hope to begin working on it in the next month.

PET Scan Results

I just got the results from the PET scan from this morning. The tumors in his lungs are slightly larger and a little more active. There are also some additional very small tumors showing on the scan as well. His primary tumor is slightly more active as well. There are no other new tumors shown. We meet with the doctor on Wednesday to discuss a possible change in his chemotherapy and or possibly radiation therapy to his lungs or heat/cold therapy. I will update again after we meet with the oncologist.

Scheduled PET Scan

Curtis has another PET scan scheduled for Friday 12/28/11. He is having some symptoms of a kidney stone or urinary tract infection. They should be able to see any stones with the CT part of the PET scan on Friday. He is off the TPN now which was providing him additional nutrition for 12 hours every night. He has lost some weight since stopping the TPN but we are hoping he will be able to gain some and not have to go back on it. We had a wonderful Christmas with Tavner and our families. I should get the report Friday so I will update this weekend of the results.

Happy Holidays! (Here is a picture of Curtis taking a cat nap with our niece Zoie)

PET Scan Results

Curtis had a PET scan, I guess it's been about a month now.. Looks like he is responding to treatment. He has 3 small tumors in his lungs still that are actually getting bigger but they are less active. The doctors are not sure if these are actually tumors or if they are pneumonitis which is a nodule that is a side effect of the study medication he is on. The other tumors are no longer detected on the PET scan except for his main tumor in his colon/rectum.

The Jeep is coming along.. almost ready to drive! The airstream is pretty much the same mess, just a little more organized now. Work on the Airstream should start in the next month..

Here is our goal :)