I spoke with all of the doctors today and it is unanimous that Jon needs to have the fluid drained from his abdomen. Dr. Chue cautioned that they not remove more than 2 liters at a time as that might cause his body to send all of the fluid from his blood vessels to his abdomen due to the sudden change in osmotic pressure (which could dangerously lower his blood pressure). He also cautioned against the use of diuretics for the same reason and agreed that utilizing natural methods such as supplements and acupuncture would be the best course. I do have a call in to Dr. Reilly (naturopath) but have not heard back from him yet. Jon is scheduled for acupuncture on Tuesday.

Jon is also scheduled to have the procedure tomorrow morning and is expected to come home later in the day. I am home right now cooking dinner for Kelsey and I, while trying to catch up on some work from the office. I've barely seen Kelsey all week and really need some quality time with my son.

Levi and Maelie came by for a visit and as always Maelie was a complete delight. The nurses had some concerns about Jon's exposure to any bacteria she might bring but honestly her presence does him more good than any potenial bacterial threat. Besides, his white count is actually better now than it usually is, I think the hospital just isn't used to the life we live.

Elizabeth has been visiting her friends in Spokane all week and calls me ten times a day worrying about Jon. I keep assuring her that if we needed her to come home immediately we would tell her. She is scheduled to come back tomorrow but there is a major winter storm brewing in the Cascades so I hope the Pass is open and she can get home as planned.

After dinner I will go back to the hospital for a visit. I'm bringing some of the wonderful homemade soaps we received from Staci for Christmas so that Jon can take a shower and finally get cleaned up.

Jon was all pissed off at his doctors when I left this afternoon. He basically can't believe that he's been complaining to them for the last month about his abdominal distention and they all kept telling him it was from the tumors not from fluid build up (secondary to the tumors). He's been telling me for months that he doesn't need me to help him or take him to chemo because it's really difficult for him to depend on anyone. I reminded him that the doctors can be so narrowly focued that it's good to have someone around who looks at the whole picture. Hopefully, someday, he will gain an appreciation of that.

Jon has been moved to room 456, a much nicer room in the new part of the hospital. He is in good spirits this morning and says he feels better than he's felt in a long time. He had asked me to bring our first back packing trip and his Alaska photo album to the hospital last night and was very chatty, showing it to the nurses on the floor.

I finally came home from the hospital and spent the night in my own bed. It is amazing how much eight hours of sleep in a normal bed can help! I feel almost human again and don't realize how exhausted I get when we go through the episodes until I finally get a chance to sleep.

I've been contemplating Jon's abdominal distension and have come to the conclusion that it is not the tumor but a condition called ascites that is a common sequala to pancreatic cancer. It can occur from a tumor rupturing (which is what we think caused the bleeding) or metastasis to the abdominal wall. The CT scan did not show any cancer in the abdominal wall so I am concluding that it is from a tumor rupture. The Hospitalist (Dr. Greenfield) also agreed that it appeared to be fluid. The treatment can be oral diuretics or using a needle to drain the abdomen. My concern with the oral diuretics is that they could potentially rob the rest of Jon's body of fluid when it needs to come from his abdomen. He has actually been extremely thirsty this week but rarely urinates, another sign that has led me to this diagnosis. In addition, when they give him too much IV his stomach swells to where it becomes very painful and they have to stop the IV. I'm not sure if they give him the diuretic how the body would know to take the fluid from the abdomen and not the rest of the cells in the body, however I'm hoping Dr. Greenfield can answer that question. I am going to call Dr. Chue, Chin and Reilly this afternoon to ask them if there is any risk at all to draining his abdominal cavity with a needle. I figure if we are going to take that approach we might as well do it while he's already in the hospital. I need to make sure there is no possibility that this procedure will disturb the cancer or have any other unforeseen risks.

I would encourage visitors today but be prepared for lots of hunting and backpacking stories, it seems Jon is getting back to his old self :)

Change of Plans

When I returned to the hospital this afternoon we met with the "Hospitalist" (MD in charge of all of the patients on the floor), she informed us that the results of Jon's blood cultures were still inconclusive so she would be keeping Jon in the hospital until Monday so that he may continue to receive IV antibiotics. He will actually need to stay on them for 10 days, however on Monday they will be able to arrange for an Infusion nurse to come to the house, Jon, of course, asked if she was good-looking, the doctor replied, "No, not really.":).

I am disappointed that I can't bring him home today but, at the same time, I want to make sure that the infection is treated appropriately. Dan is on the docket to pick him up on Monday since I need to get back to work now that Jon is stablized).

Jon is still weak and tired so he didn't really seem to mind staying a few more days. He says visitors are welcome but please keep your visit short.

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.