We're heading home today! The GI physicians assistant came in this morning and confirmed that all the tests were negative and Jon's hematocrit and hemoglobin are on the low end of normal. He ate a full dinner of spaghetti (they were out of lasagna), cottage cheese and fruit last night and a breakfast of Cream of Lumps and pancakes this morning. He is still weak and his stomach distended but his color and demeanor are much improved. We are also awaiting the results of the peripheral blood tests to determine whether the staph infection was from his port or systemic through his blood. If it is from the port he can have oral antibiotics, if it's systemic I will need to give him IV antibiotics. We think we can do this at home now that he has the port.

We will meet with Dr. Chin on Tuesday to see where we go from here. Most likely oral chemo until we can do the Photodynamic therapy. The GP doctor at Auburn also thinks that Jon's distended stomach might be fluid and that there is a possibility that it could be drained. That would make him really happy as it is uncomfortable and limits how much he can eat. He also doesn't like looking like a regular, middle aged guy when he is so used to being "buff" his entire life.

Thanks to everyone who stopped by, called and sent us postive thoughts and prayers. Special thanks to Lori Belinski for assisting with supervising the nurses (dont' ever get sick on a holiday!), bringing me food and coffee, and posting the blog while I was away from the computer.

No New News

All the tests, including the CT Angiogram, so far have been negative including the consideration of an aneurysm, and other more serious concerns such as the pancreas bleeding. The new decision is that it must have been the tumor that has been bleeding. The bleeding appears to have stopped for now and his hemoglobin and hematocrit are almost in the normal ranges. They have decided not to do the colonoscopy due to its discomfort, and the fact that they think it was not the lower colon that was bleeding. He is finally allowed to eat, after 3 days, and has been given dilaudid and is resting a great deal more comfortably.

Yes, Liz, we have been concerned that he may bleed to death, but as long as I am here with him that won't happen. All the nurses now check in with me for the real history of Jon's health concerns.

He is looking forward to his first meal of lasagne, and hoping to go home tomorrow. Once we get home, and Jon get's a duck hunt under his belt, we will check in with Dr. Chin.

Holiday Events Continue

Jon and I are still at the Auburn Regional Medical Center and waited all day yesterday for an endoscopy procedure to take place with hopes that we would have some answers as to where the bleeding is coming from. At 6pm they finally came to take him to the procedure and promised that it would be painless. I have come to learn that "painless" to a nurse doesn't always mean the same to a patient. After the procedure the doctor indicated that there was no sign of bleeding in the stomach and after talking with me about Jon's history he decided to go look a little further down, which probably didn't make Jon feel any better, but gave us more information. Still no sign of bleeding in that area. The Abbott and Costello nurses (otherwise known as Shouting Susan and Train Wreck Connie)returned Jon to his room refusing to recognize that his extreme discomfort was exactly what he had said, he had to use the bathroom! They thought that they knew better and kept trying to tell Jon that he really didn't, it was the side effects from the procedure. Because of the amount of medicine they gave him they would not let him up because he might fall. After convincing them I wouldn't let him get up, the nurses left and Jon beelined for the bathroom door and he felt much better! He was then given 2 pints of blood and some dinner, and just began feeling a little better...and then the real circus began. They discovered he had a staph infection and with IV tubes in both hands and antibiotics dripping in Jon didn't get much rest so visitors should call me first, and not stay too long.

The doctor was here a little while ago and since they still have not found the source of the bleeding she is considering all of the possible diagnostics necessary. She suggested that rather than to perform a very uncomfortable colonoscopy she would order a CT Angiogram. This procedure will see if there is bleeding in the pancreas and then they would have more information on the best approach after that.

I will remain at the hospital until I know where the bleeding is coming from, and what method will be taken to make it stop, and Jon is stable. Your New Year's prayers are welcome!

Another Eventful Holiday

Jon and I spent New Years Eve in the Auburn General Emergency Room to ring in 2009. Gezz, what a way to start a new year! He had been feeling crummy since he returned from having his port installed and spent most of Wednesday in bed while I was at work. In the cancer world that is not unusual so honestly I didn't think that much about it until I came home and he was still in pain and extremely tired. We called the Nurse Hotline to ask about the pain around his port and the fact that it was "left open" for the chemotherapy that was supposed to take place on Wednesday. He had me cancel the appointment because he was feeling so tired and wanted to have a week off. The nurse suggested that we go to the ER to have the port evaluated and insure that he wouldn't have to have another one put in. As he was up and moving around he became increasingly weak and short of breath. By the time we got to the ER he was extremely pale. It took the nurse about 15 minutes to figure out he was bleeding internally and they immediately got him into a private ER room and hooked up to IV. The tests confirmed he was bleeding from his stomach secondary to the chemotherapy. This particular chemo has always bothered his stomach but never quite to this degree. Since chemo targets rapidly dividing cells it kills not only tumors but red blood cells, white blood cells, platelets and the lining of your stomach. His blood work showed a hemoglobin of 6 and a hematocrit of 24, normal is 12 and 48 respectively. They gave him IV meds to stop the bleeding and two units of blood. He is looking much better this morning with some color in his face, but his vitals are still on the low end. They will be doing an endoscope today to be sure of the location of the bleed, he may also have more scans.

I just came home for a shower and to grab our cell charges so we can talk to all of you. He is ok for visitors although he asked that everyone keep there visits short. They think they will keep him 2-3 days to make sure he is stabilized. We plan on switching to the Revlimid as soon as it is available since there is no way Jon can tolerate any more of this POLF chemotherapy.

We had to forgo our duck hunting plans in lieu of Jon getting his port. He had an appointment yesterday but SCTWC hadn't sent the appropriate paperwork so he had to do it today. Jon's doing ok, mostly tired and unhappy about all of the antibiotics they gave him for the port surgery. He's decided to skip chemo tomorrow and give himself a week to get his strength back. On a positive note we have both noticed some shrinkage in the size of his abdomen so hopefully the chemo is having an effect.

I spoke to Dr. Chen and Dr. Gosswami today. Dr Gosswami felt that radiofrequency ablation in the pancreas is too risky so that is officially off of the table. Dr. Chen gave me all of the info on Photodynamic Therapy and it sounds promising. Unfortunately, Jon is not a candidate at this time because they are only testing liver and colon cancer right now, however, it is possible that he will be a candidate by spring for the newer studies. I am still waiting to hear about the genetic testing and Revlimid. I did talk to another one of Dr. Chues patients who is using the Revlimide with Zoloda an doing well. That is also anther option should this current chemotherapy prove intolerable.

Dr Chue, Dr Chue, Dr Chue!

I have been on a cancer rampage since my last blog. On Friday I put calls into SCTWC, Dr. Goswami and UW Medical Center to address all of the concerns I posted on my last blog. I was only able to leave messages but am expecting return phone calls tomorrow. Ironically, while I was on the phone I received another telephone call from a number I didn't recognize. When I checked my messages, low and behold, it was none other then Dr. Chue. He left me his home telephone number and when I called him back on Saturday we had a two hour conversation about Jon and his current situation. It felt like having an audience with the Pope! The man is truly a genius and there will never be a way for Jon or I to repay him for what he has done for us. By the end of our conversation I had a list of chores and am equipped with all the questions, phone numbers and research articles I need to move forward with Jon's treatment. As it stands, Jon will continue on the current chemotherapy until he can no longer tolerate the side effects. In the meantime I will follow up on the genetic testing that was ordered when Dr. Chue was still practicing. I don't believe it was done and it is an important test to determine the effectiveness of other types of chemotherapy that may be beneficial. Dr. Chue also gave me the telephone number for a Dr. Chen who is the pioneer of Photodynamic Therapy in the Seattle area. Dr. Chue was certain it was effective for lung and liver metastasis and thought it could possibly be used on the pancreas. We also have the option of radiofrequency ablation on the pancreas and am awaiting for Dr. Goswami to give his opinion on that. Dr. Chue is not in favor of the Y90 because it has not been shown to be successful on pancreatic patients and can make Jon sicker than he already is. We will probably save that as a last ditch effort. Dr. Chue also reminded me that he had a few other "secret formulas" up his sleeve.

Jon is still very tired and his abdomen is distended by the size of the tumors. However, having Dr. Chue back in the pictures gives us hope that there are still other options available should this current regiment prove ineffective. I am grateful for having a direct line to the Chuemaster and will use it as needed. Tomorrow Jon gets his port, Tuesday we go to "Jon's Private Duck Club" together for my first duck hunting experience and Wednesday Kristi takes him to Chemo #4. New Years Eve might prove interesting. I told him he should let them give him his normal dose of steroids so he can stay up all night and ring in the New Year with me :)

This last month has been very difficult for all of us. I don't think either of us have felt this low since the original diagnosis. Cancer has a way of wearing you down after a while. But, today was a good day. Another one of Jon's friends, Dave Bartran, came over to duck hunt with Jon and I got to ski all day with my friend, Mari. It was perfect snow, a beautiful day and we had a great time. It was nice to feel happy for a few hours.

I was surprised to see how long it's been since I posted anything. I guess I've been busy with all of the Christmas preparation and celebrating the holiday.

We had a nice Christmas, on the quiet side since Jon's been fairly tired with this recent chemo. Levi, Ericka, Wyatt, Maelie, Elizabeth, Jon and I all spent Christmas Eve together. It was awesome to have grandchildren at Christmas (and the rest of the time as well)! Maelie is old enough to really understand and appreciate the holiday and kept us all entertained. Wyatt is an adorable, chubby baby and I am looking forward to my Tuesdays of babysitting that start in February. We all made fun of Elizabeth because Wyatt would cry the minute she would hold them and would stop the second Kelsey or I would take him from her! We all decided Ericka is truly a gift from God and we are all thrilled to have her a part of the family. Levi has matured into a wonderful husband and father, I still have a difficult time believing the stories of his youth and am thankful I missed out on all of that and get to enjoy them all now :)

The kids and I were up late doing church and our "Santa jobs" so we all slept in on Christmas day. Jon skipped out on candlelight services and went to bed early so he could preserve his energy for Christmas Day and duck hunting the rest of the week. Christmas morning was Jon, me, Elizabeth, and Kelsey who opened gifts and stocking stuffers while we drank coffee and ate cinnamon rolls. We went to Granny Nichols for Christmas dinner to celebrate with most of the Nichols clan. Tonya did a great job organizing the day and asked all of us to bring a Nichols memory to share. It was fun to reminisce, even for those of us who are new to the family.

Chemo last week was somewhat difficult for Jon. Krist and Tonya escorted him this time and he was feeling sick before they even left the new SCTWC. Jon had also been experiencing chest pains but Dr. Chen determined it was from the position he was in during chemo which cause the tumors to press up on his chest. He was chilled, nausea and tired when he got home but after an hour in bed with hot water bottles and an oxycodone he was up eating dinner and looking for his hunting magazines. He's been mostly just tired the rest of the week and he needs to take injections to boost his white count. He is finally giving in and getting a port so they can stop putting chemo in his veins (or what is left of them.) I am relieved that he finally made the decision and have been concerned that in the event of an emergency they would be unable to access a vein. He goes to Auburn general on Monday to have the port installed and is back at chemo on Wednesday.

Last time he had this regimen of chemo he had absolutely no side effects until 6 weeks into the program. This time its been problematic since chemo #1. We both feel certain he won't be able to tolerate all 12 and have decided to contact Dr. Goswami this week to see if there is anything he can do for the tumor on his pancreas. It is large enough to palpate through his abdomen and we are hoping that it can be treated with radiofrequency ablation and then he can have the Y90 embolization on his liver. The tumor on his pancreas also has the highest SUV on the PET scan which is a measure of the strength of the physiological activity of the cancer. It is our biggest concern because of the possibility of spreading so we want to eliminate it in the best way possible.