Updated: Jun 12
May 12th: So we ended up making the ER trip on Tuesday night and she was admitted. She ended up getting the chills and upon arrival also had a fever. Normal bilirubin level is 1 and hers was 26. She would have died if she waited to go in. It's either gallbladder cancer or bile duct cancer. Both are treated the same and are aggressive. There are no other tumors at this time. And they said they can't remove it because it is intertwined with the blood vessels and arteries in that area. If they can shrink it, then maybe they can remove it.
I'm not sure if she will decide to do chemo or not. Maybe with these surgeries and her starting to feel better she may decide to. She watched her husband go through this with pancreatic cancer and has already said she wants quality of life over quantity. I guess time will tell. While we have more trials to go through, the fact that they were able to place a port is at least some kind of good news based on how this past week has gone.
May 13th: She had a port placed yesterday so bile can either drain properly in her body or outside to a bag. She is still in the hospital and will have surgery again tomorrow to have a stent placed and a biopsy done. I don't know when she will be released from the hospital. Her pain level is pretty high at times and with surgery again tomorrow (although that one goes through her mouth/throat so no cuts are made) it's unclear what the plan will be.
I've learned this morning I don't respond well to people in a lot of pain. Without even realizing it, I was packing up my bag as if I was going to leave the hospital room as she was trying to come back from the bathroom. The port area was sore and watching and hearing her was miserable for both of us. I'm still grateful she is in the hospital where she has care from nurses. The port will remain in place for some time yet even after the stent placement tomorrow. The nurse from radiology said it was extremely hard to place so they will not be removing it any time soon. She will need wound care when she comes home and lord knows I'm not looking forward to that AT ALL! Now I know why I'm not a nurse. I can do it but I sure AF don't like it. Not sure yet when she will be coming home. She's now napping and her body definitely needs that.
May 14th: Her stent surgery was successful. She's still in the hospital until tomorrow morning so they can make sure she doesn't end up with pancreatitis. We should have the biopsy results next week assuming they ended up with enough to test. Once the biopsy results are in, we'll have an actual place to begin and she will need to make some decisions.
The port will stay in with the drainage bag for at least a week or two. Then they will remove the bag but leave the port for another couple weeks to make sure her bile is all draining properly before removing it. Home health care will take care of her wound care/port entry site because I can't. I'm not a nurse and that's just too much. Three surgeries since Thursday last week and here we are. Hopefully, she can continue to improve.
May 15th: We got home in the middle of the day. It amazes me that they release patients to family that have no experience caring for others in this capacity. She's been sleeping a lot which is best since lord knows she didn't get much rest in the hospital.
She got up a little while ago and was nauseous. She hasn't really eaten anything and had a pain pill before napping so we're guessing that's the culprit. She's back in bed right now because she doesn't feel good. We are meeting a new primary care doctor Tuesday. Should have a diagnosis by then as well. She will have liver panels drawn on the 24th and hopefully they can cap the drainage tube and remove the drainage bag. The tube will remain until mid to late June. She has made comments about doing chemotherapy. She said today that at least she would just be sick but not sick AND in pain. She's still pretty uncomfortable from that drain tube surgery. I'm exhausted and this has just begun.
May 21st: She was released from the hospital last Saturday. They prescribed her heavy hitting antibiotics/anti inflammatory drugs, along with acidophilus because the antibiotics would wipe out all the good bacteria. She also came home with pain pills. The antibiotics were supposed to be for 4 days. They ended up making her sick to the point that on Monday she began vomiting and then of course, not eating. A call to the doctor got her some anti nausea medication. Tuesday she saw a new primary care physician who she really liked which is a huge thing since she is very judgmental and aggressive. If you know her, you know this to be her truth. There were concerns that she was developing an infection at the port site as it was red. I left the room and went to the waiting room because it was so hot in there I was feeling nauseous. They took blood to check all her levels since she had been sick the day before. The surgeon called me while I was in the lobby. He said he was looking at her blood counts and everything was normal and she likely was experiencing irritation. It's a foreign item in the body and of course the body doesn't like it. Her white blood cell count was normal with no signs of infection. Her bilirubin level went from 26 to 14 in just a week which is exactly what they were anticipating. The goal is still to remove the bag next week. And he confirmed that it is cancer. He believes gallbladder cancer that grew into the bile duct. They are testing her blood to find out the impact to her other organs. We left the house yesterday to get her a chair for in the shower and a new nebulizer. We grabbed lunch and came home. Then she wanted to go to Target as she wanted a new purse. She, a smoker her whole life, has stopped smoking and now she is able to smell it on her things, especially her purse. She was able to find a new purse and matching wallet in the clearance and was happy about that. She was tired out by the time we got home so she went to rest right away. She said she was happy to have gotten out of the house because she has been extremely bored in her room. She has her own air conditioner (even though we have central air) because of her COPD and asthma, she can't breathe well in humidity. We would freeze out of our home if we had to keep it a level she could handle. She has her own tv and we connected an antenna so she would have something to watch. I asked her what she did at home and she said there was always something to do which I can understand. She lived alone and had to do everything. We meet with oncology on Tuesday next week. I have a strong hunch she will not do chemo but we'll see. Maybe she'll do one round to see how it goes, who knows. This has definitely been a transition for all of us and we appreciate all of those who have reached out and kept us in your thoughts and prayers.